Reader’s Choice : Oophorectomy & Endometriosis

Plushy ovary available on

When I was getting ready to get wheeled into the Operating Room back in 2014 for my cystectomy, my Doc tells me that if he gets in there and there’s extensive damage, he may need to perform an oophorectomy (pronounced oh-uh-fuhrek-tuh-mee).  I signed the permission slip/waiver without blinking and off we went.  Luckily, he didn’t have to perform one.  And this turned out to be my Endo diagnostic surgery.  Quite the day.

One of our readers & fellow blogger, SnowDroplets, asked the other day if I could look into the pros & cons of oophorectomies, when to have them, and hormone replacement therapy after the ovary(ies) is removed (especially how it may affect with with Endo).  You know how I love to learn about new things, so here goes!  And thank you, SnowDroplets, for asking this question.  I learned A LOT today.

An oophorectomy is a surgery to remove an ovary.  When one ovary is removed it’s a unilateral oophorectomy; if both ovaries are removed, it’s a bilateral oophorectomy.   And if the Fallopian tubes are removed with the ovaries, it’s called a salpingo-oophorectomy.

“But, Lisa,” you ask, “why would you need one or both ovaries removed?” Good question!  Lots of reasons! And we’ll delve into those reasons today.


Ovaries may be removed due to the presence of ovarian cancer…or even just because a woman may have a high risk of developing ovarian or even breast cancer.  If the removal of the ovaries is simply as a precaution, the Fallopian tubes will likely be removed, too, as recent studies have shown that the tubes may also develop Ovarian cancer.

Angelina Jolie underwent a salpingo-oophorectomy because of her already-increased risk of ovarian and breast cancers.  Preventative medicine.


Ovarian torsion is when the ovary is twisted so badly that it may obstruct blood flow, causing the ovary to swell, which may cause irreversible damage, abdominal swelling, and pain (it can also twist the Fallopian tube).  Torsion is considered among the Top Five gynecological emergency surgeries. Conservative surgery can unravel and save the twisted ovary; however, many women who suffer from ovarian or tubal torsion opt for oophorectomies instead.

Tumors or Cysts

Benign tumors or cysts on the ovary can simply be cut away (cystectomy); however, sometimes the damage to the tissue may be too extensive or the tumor or cyst may be considered cancerous, and the ovary is removed.


An abscess can grow on the ovary or Fallopian tube and it can be very painful.  Imagine a nasty like a nasty little puss-filled zit.  It usually is the result of some vaginal or cervical infection and may go hand-in-hand with Pelvic Inflammatory Disease.  Most ovarian or tubo-ovarian abscesses can be treated with intravenous antibiotics and a hospital stay; however, surgery may need to take place to either 1) drain the abscess, or 2) remove the damaged ovary or tube.

Pelvic Inflammatory Disease

Pelvic Inflammatory Disease is a disease of the pelvis, which can affect the uterus, Fallopian tubes, or ovaries, mostly transmitted through sexual intercourse.  Long-term, untreated Pelvic Inflammatory Disease can cause adhesions to develop, or the infection may cause sepsis, which can be fatal.  PID can also cause abscesses, which may need to be treated with antibiotics, drained, or the infected ovaries removed (as we just learned).

Some studies indicate that women who suffer with chronic PID share an increased risk of developing ovarian cancer.  And, as we learned, some women have oophorectomies to combat their increased risk of cancer.

Some women with PID are advised to get hysterectomies because of the damage the infection has caused to their uterus.  The ovaries may be removed, as well.


A hysterectomy is the removal of the uterus, with out without removing the cervix, the Fallopian tubes, and/or the ovaries.  Depending on a woman’s age and medical condition, she may opt to keep her ovaries, or have one, or both, removed during a hysterectomy.  That is a decision that she and her doctor must make together, weighing many factors.


Some women with severe Endometriosis symptoms may ask for a bilateral oophorectomy, thus ending their periods.  Many also opt to have a hysterectomy.  When I asked my doctor his thoughts on the matter, he said that it will not cure Endometriosis, but it would help with the painful periods…since I wouldn’t have my period anymore.  We’ll cross that hysterectomy bridge if we ever truly have to…but for now I have all my LadyBits.

Studies have indicated that Endometriosis sufferers who undergo a hysterectomy and bilateral oophorectomy have a decreased risk of recurrence.  One study had 29 women undergo a hysterectomy, but left their ovaries – 18 of those women had recurrence of Endo.  That same study had 109 women who had hysterectomies with bilateral oophorectomies, but only 11 of them had recurrence.  A second study showed similar findings with a different bunch of ladies.  And yet another study found that it didn’t make a difference if you kept your ovaries or not with a hysterectomy; that the rate of recurrence was the same.

My personal belief is that a hysterectomy isn’t a cure for Endometriosis.  I know it has helped a lot of women with their symptoms, but I also know a lot of women who continue to suffer years after their hysterectomy.  Excision is the key.  And even then it may recur.

That being said, Endometriosis is believed to be an estrogen-fed disease.  Ovaries produce estrogen, but so do a lot of other functions  in our body (adrenal glands, fatty tissue, and certain foods & supplements mimic estrogen) – cut out the ovaries and our bodies are able to still produce estrogen. Just know that fact…

Surgical Options

If you’ve had surgery for Endometriosis, you’ll be familiar with these choices of surgical techniques for removing the ovaries:

Laparotomy: manual surgical procedure using a large incision across the abdomen; usually a longer recovery time with more risks of complications.  May require a hospital stay.

Laparoscopy: manual surgical procedure using smaller incisions, tiny camera, tiny surgical instruments; usually a faster/easier recovery.  May be outpatient (in and out the same day).

Robotic laparoscopy: same as a laparoscopy, but this time it’s robot-assisted! Queue the Terminator!

Pros & Cons

The biggest pro to an oophorectomy : hopefully you’ll be solving whatever issue caused you to have the procedure done in the first place!

If you have only one ovary removed (and still have your uterus), you’ll continue to have your period and are still able to conceive naturally (well, if your body will allow you to).  Even if you have both ovaries removed and still have your uterus, you can still make babies, but with help from SCIENCE!!  Consider freezing your eggs for future IVF treatments before the bilateral oophorectomy, although some doctors just won’t do it under the theory that freezing eggs isn’t a viable option.

Women who undergo a bilateral oophorectomy are plunged into immediate menopause.  The severe lack of hormones that may also cause depression, mood swings, and sex drive, or even lead to heart disease, osteoporosis, or dementia.

Studies indicate that women under the age of 40 who undergo a bilateral oophorectomy are 7 times more likely to develop heart disease.  They’re also at a higher risk of stroke, Parkinson’s Disease, anxiety, or depression.  The younger the age of the woman at the time of surgery, the greater the risks of developing these conditions.

Another study indicated that a woman’s risk of developing dementia or cognitive impairment is increased by 50% if they undergo an oophorectomy.  Further research is needed, and quickly.

As with all science and studies, though, the data is ever-changing.  Reanalysis of past studies are always being conducted and contradicting prior findings.  These pros & cons may seem dark and scary…but know that not all women suffer from these side effects or increased risks.  Our bodies are our own.  Individual.  Don’t let these scare you from treatment you may need.  Please talk to your doctor.

Hormone Replacement Therapy

To combat some of those cons, some physicians recommend hormone replacement therapy (also called HRT).

Some studies have indicated that women with Endometriosis (and no ovaries) may benefit from a continuous combined HRT (estrogen + progestogen) or the use of Tibolone.  Rather than just straight estrogen, these therapies may not stimulate the recurrence of Endometriosis.

Not only can hormone replacement therapy be detrimental to those with Endometriosis, but it once more increases the chance of cancer in women who take HRT.  Research shows that women over the age of 45 who had undergone a hysterectomy with bilateral oophorectomy and are taking HRT have an increased chance of developing breast cancer.

Some side effects to hormone replacement therapy can be irregular bleeding, nausea, breast tenderness, leg cramps, depression, and irritability.

When do you know if you should consider an oophorectomy?

Well, you’ll likely not know until your physician says something.  He or she may bring it up in a consultation after reviewing your symptoms and imaging studies.  Or it may be, like me, a possibility during a surgical procedure.

If the oo-word does enter into your realm of possibilities, please have long discussions with your doctor about your individual medical history, the risks, and the benefits.  See if only one ovary needs to be removed, or if they must take them both.  If you’re getting a hysterectomy, please know that they don’t always have to remove your ovaries; again, talk to your doctor.

Write down your questions before your appointment.  Bring them with you and ask them all…and write down the answers.  Sometimes it helps to have a friend or loved one accompany you; they may remember some information you didn’t.

And most importantly, breathe.  It will be okay.


Baylor, Scott & White Health

Dr. Scott Salisbury

Facing Our Risk of Cancer Empowered

Healthy Women

HERS Foundation

International Business Times – (March 25, 2015; Article) What is Salpingo-Oophorectomy? Angelina Jolie Had Surgery to Reduce Ovarian Cancer Risk, But Procedure Not Recommended for All Women


Mayo Clinic

Modern Medicine Network – (July 1, 2011; Article) Bilateral Oophorectomy: Solving the Risk/Benefit Equation – Choosing Candidates, Monitoring Outcomes – (Feb. 17, 2014; Article) Oophorectomy Increases Risk of Osteoporosis and Cardiovascular Disease

Obstetrics & Gynecology – (April 2013; Article) Long-Term Mortality Associated with Oophorectomy Compared with Ovarian Conservation in Nurses’ Health Study

Our Bodies Ourselves

RadioGraphics – (2008; Article) Pearls and Pitfalls in Diagnosis of Ovarian Torsion

RadioGraphics – (2004; Article) Unusual Causes of Tubo-Ovarian Abscess: CT and MR Imaging Findings

Susan G. KomenPost Oophorectomy Estrogen May be Safe for Younger, Not Older, Women

The New England Journal of Medicine – (May 23, 2002; Article) Risk-Reducing Salpingo-Oophorectomy in Women with a BRCA1 or BRCA2 Mutation

US National Library of Medicine – (Oct. 2006; Abstract) Hormone Replacement Therapy in Women with Past History of Endometriosis

US National Library of Medicine – (Jan. 2009; Article) Long-Term Effects of Bilateral Oophorectomy on Brain Aging: Unanswered Questions from the Mayo Clinic Cohort Study of Oophorectomy and Aging

US National Library of Medicine – (Aug. 1996; Abstract) Pelvic Inflammatory Disease and Risk of Ovarian Cancer

US National Library of Medicine – (Oct. 1986; Article) Tubo-Ovarian Abscess: Pathogenesis and Management

Wiley Online Library – (2012; Article) An Update on the Diagnosis and Management of Ovarian Torsion


Women’s Health Concern


~ Again, I am a layman.  I do not hold any college degrees, nor mastery of knowledge.  Please take what I say with a grain of salt.  If curious, do your own research 😉 Validate my writings.  Or challenge them.  And ALWAYS feel free to consult with your physician. Always.  Yours ~ Lisa

Reader’s Choice : Endometriosis & Bipolar Disorder

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I was contacted by one of our readers who shall remain anonymous.  She suffers from Polycystic Ovary Syndrome (PCOS) and Bipolar Disorder.  Her OBGYN suspects she has Endometriosis; however, she had to return to college out-of-state and wasn’t able to have her diagnostic surgery.  In the meantime, her physician is encouraging her to remain on birth control pills to suppress the possible Endo symptoms.  Her symptoms are worsening…

She had heard that there may be a link between Endometriosis and Bipolar Disorder, and that it may be difficult to treat both at the same time due to complications with the medications interacting with each other, or even cancelling the medicinal effects of the pills.

She piqued my interest.  And the research begins!  Is there a link?  What about negative interactions with medication?  What can she do now?

If you’re reading this, you’re probably already familiar with Endometriosis.  If not, click here to read more about what it is and how to treat it.  But what is bipolar disorder?  I’ve heard of it, but haven’t actually asked what it is.

It’s considered a chronic illness which affects the brain and moods, often switching between extreme emotions : happy moods (manic) and incredibly depressed moods (depressive).  They don’t know what causes bipolar disorder, but it can run in families.  There are ongoing studies to greater understand and hopefully one day cure bipolar disorder (for a list of clinical trials, click here).  Treatments can include medications which help soothe and control moods, therapy, and/or electroconvulsive therapy.

There is; however, one very interesting theory by Dr. Jory Goodman that many people who have been diagnosed with Bipolar Disorder have been misdiagnosed and instead suffer from hormone imbalances, including PMS and PCOS.  I’m not saying this to lessen your bipolar diagnosis, if you are reading this and suffer from it.  I’m simply pointing out another person’s perspective.  As they say, “knowledge is power.”

There are several studies that find women with Endometriosis seem to be more prone to mood disorders.  In 2006, 16 women with Endometriosis (diagnosed via laparoscopy) were evaluated.  Seven of them were bipolar disorder mixed, 3 for bipolar disorder manic, and 2 suffered from major depression.  Of those women, 9 had a parent, sibling, or relative who also suffered from a severe mood disorder.

In 2011, the study was revisited, but this time compared 27 women with Endometriosis to 12 women who suffered from pelvic pain, but did not have Endometriosis.  It found that there was a “significantly greater proportion” of women with Endo and Bipolar Disorder than women without Endometriosis.  They suggest as part of managing Endometriosis, a psychiatric evaluation may be conducted to diagnose or rule out the comorbidity (existence of 2 chronic conditions at the same time) of Bipolar Disorder.

A review of 18 English studies in 2015 found that 56.4% of women with Endometriosis met the criteria of suffering from a psychiatric disorder.  It does not identify a cause/effect relationship, nor what the relation between the two conditions may be.  But it is a staggering figure.

Many women who suffer from Endo and Bipolar Disorder have issues balancing out their medications.   They cancel the effects of one another, or heighten the symptoms of the other disease.  Doses, or types, of medication may need to be adjusted to lessen any potential interactions.  It is a balance game; one which needs to be carefully monitored by your physician until a proper dosage (of either medication) can be found for you.

Are you worried about possible interactions between your Bipolar meds and Endo meds?  Please, talk to your doctor. offers this amazing list of questions to ask your:

  • Are there any medical conditions that could be causing or exacerbating my mood swings?
  • What are the side effects and risks of the medication you are recommending?
  • When and how should I take this medication?
  • Are there any foods or other substances I will need to avoid?
  • How will this drug interact with my other prescriptions?
  • How long will I have to take this medication?
  • Will withdrawing from the drug be difficult if I decide to stop?
  • Will my symptoms return when I stop taking the medication?

A wonderful resource to check if your medications have interactions may be found at  I ran a few common Bipolar meds with Endo meds to see if they had any interactions and/or lessen their effectiveness. I’ve listed a few of them below:

Amethyst (birth control pill) & Depakote – may cause loss of seizure control, tremors, poor muscle coordination, increased seizures, and changes in behavior.

Amethyst (birth control pill) & Klonopin – may prolong the half-life of benzodiazepines in your system

Amethyst (birth control pill) & Lamotrigine – may reduce blood levels that effect lamotrigine.

Amethyst (birth control pill) & Topamax – can make birth control pills less effective.

Amethyst (birth control pill) & Xanax – may prolong the half-life of benzodiazepines in your system

Depo-Provera & Depakote – may cause loss of seizure control, tremors, poor muscle coordination, increased seizures, and changes in behavior.

Depo-Provera & Lamotrigine – may reduce blood levels that effect lamotrigine.

Lupron Depot & Celexa – may increase the risk of irregular heart rhythm, which may be life threatening.

Lupron Depot & Lithium – may increase the risk of irregular heart rhythm, which may be life threatening.

Lupron Depot & Prozac – may increase the risk of irregular heart rhythm, which may be life threatening.

Lupron Depot & Seroquel – may increase the risk of irregular heart rhythm, which may be life threatening.

Lupron Depot & Trazodone – may increase the risk of irregular heart rhythm, which may be life threatening.

Lupron Depot & Venflaxine – may increase the risk of irregular heart rhythm, which may be life threatening.

Mirena (IUD) & Depakote – may cause loss of seizure control, tremors, poor muscle coordination, increased seizures, and changes in behavior.

Mirena (IUD) & Lamotrigine – may reduce blood levels that effect lamotrigine.

Naproxen Sodium (NSAIDs) & Celexa – may increase the risk of bleeding.

Naproxen Sodium (NSAIDs) & Lithium – may increase blood levels, which effects the lithium.

Naproxen Sodium (NSAIDs) & Prozac – may increase the risk of bleeding.

Naproxen Sodium (NSAIDs) & Venflaxine – may increase the risk of bleeding.

Naproxen Sodium (NSAIDs) & Yasmin (birth control pill) – may increase potassium levels in the blood, which may lead to the development of hyperkalemia (elevated levels of potassium in the blood).

Yasmin (birth control pill) & Depakote – may cause loss of seizure control, tremors, poor muscle coordination, increased seizures, and changes in behavior.

Yasmin (birth control pill) & Klonopin – may prolong the half-life of benzodiazepines in your system

Yasmin (birth control pill) & Lamotrigine – may reduce blood levels that effect lamotrigine.

Yasmin (birth control pill) & Naproxen Sodium (NSAIDs) – may increase potassium levels in the blood, which may lead to the development of hyperkalemia (elevated levels of potassium in the blood).

Yasmin (birth control pill) & Topamax – can make birth control pills less effective.

Yasmin (birth control pill) & Xanax – may prolong the half-life of benzodiazepines in your system

If you suffer from Endometriosis and Bipolar Disorder, know a few things :

  1. You are NOT alone.  Many women have been diagnosed with both conditions;
  2. Talk to your doctor about any potential interactions with treatments for both conditions;
  3. Hold onto hope.  There are ongoing studies and trials to help with Endometriosis and with Bipolar Disorder.

I hope I was able to answer some questions and offer some guidance today.  I would like to thank our reader for bringing this to my attention.  I never would have known otherwise…





Bipolar Reddit – Bipolar & Endometriosis: Meds that Do Not Cancel One Another Out?

Depression and Bipolar Support Alliance – Research Studies : Bipolar Disorder

Depression Forums – Endometriosis & Bipolar 2

Disassociated Press – Remission? – Drug Interaction Search – (Dec. 2015, Article) Endometriosis Associated with Psychiatric Disorders, Say Researchers – Bipolar Medicaiton Guide : Medications and Drugs for Bipolar Disorder Treatment

Journal of Obstetrics and Gynaecology Canada – (Nov. 2015, Article) A Systematic Review of the Association Between Psychiatric Disturbances and Endometriosis

National Institute of Mental Health – Bipolar Disorder

Psych Central – Endometriosis, Bipolar, and Birth Control

Psychology Today – (Oct. 2013, Article) Hormone Imbalance, Not Bipolar Disorder

The American Journal of Psychiatry – (April 2006, Abstract) Bipolar Mood Disorder and Endometriosis : Preliminary Findings

US National Library of Medicine – (Nov. 2011, Abstract) Revisiting the Association Between Endometriosis and Bipolar Disorder

~ Again, I am a layman.  I do not hold any college degrees, nor mastery of knowledge.  Please take what I say with a grain of salt.  If curious, do your own research 😉 Validate my writings.  Or challenge them.  And ALWAYS feel free to consult with your physician. Always.  Yours ~ Lisa

Reader’s Choice : How to find an Endo Specialist in my Area



It’s a New Year!  Time for new beginnings, fresh starts, and resolutions!  And time time for me to start writing again 🙂

Today’s question is from one of our Readers, and she asks, “Do you have any advice on how to find a local or local-ish doctor who ‘specializes’ or at least is studied in endo more so than your averge ob/gyn? I’m looking for someone like that, but no luck so far.”

So, how do you go about finding a specialist in your area?  It will take patience, research, and balls.  That’s right : balls.  And, I want to make it clear that I am not endorsing any of the physicians identified in this blog, or any of the links provided.  Just hoping to point you gals in a direction…hopefully the right one for you.

Step One: Ask Your Doctor

One of the best places to start is by asking your current doctor, primary care physician, or OB/GYN for a referral to an Endometriosis specialist.    Make sure they understand you’re not looking for a referral to just an OB/GYN, but someone who has experience with or knowledge about Endo.  They might know *just* the right person…This may actually be a fruitful step.  It may also be a big disappointment… But it never hurts to ask!

Step Two: Ask EndoSisters in Your Area

If you know of any EndoSisters in your area, find out where they treat.  And how they feel about their doctor.  Word of mouth is a very valuable resource!  And could also save you a lot of misery…

Don’t know of any EndoSisters personally who live in your area?  Check online forums or social pages and ask for recommendations.

Step Three: The Internet (Research & Patience)

I’ve found a few sites that may be helpful in your search.  See “Resources” below for the links to these pages:  The American Association of Gynecologic Laparoscopists has put together a Physician Finder function.  You just plug in “Endometriosis” as the Practice Specialty and toss in your location and *poof* a list pops up.  Each entry offers a little blurb about the doctor; however, it appears each is a member of AAGL.  Some really good physicians may be out there waiting for you to find them and may not be members of AAGL. Not only does it have a very catchy name, but the author of this page has listed the “Top Twelve” Endo excision specialists around the US.  DocSpot is an online directory you can search for physicians in your area that have interests in conditions.  For example, I punched in “Endometriosis” in the Find field and “San Diego, CA” in the Near field.  It brought up a list of 27 different physicians in my area with a “relevant interest” in Endometriosis.  It also offers patient ratings and reviews.

Endopaedia.  Endopaedia created a Google map identifying supposed Endo specialists around the globe.  Each entry contains information on the physician and their practice.  Curious?  Click here.  Zoom in and find your area!  You may just get lucky.

Endometriosis Association.  The Endometriosis Association has created a list of Endometriosis physicians and specialists; however, it is not available to the public.  You must be a member of the E.A. in order to have access to this list (which is mailed to you).  Even as a member, you must pay for it.  Yearly dues are $35, and the physician list is $4.  I have no idea how this list was compiled, or when it was last updated.  But if you’d like to receive it, sign up.

Endo-Resolved. This site has a great page about trying to locate doctors in your area and they have created list of well-known specialists around the globe.  One may be near you!

EndoVictims. This webpage was last updated in 2005; however, has a long list of doctors that likely specialize in treating Endometriosis.  This list was submitted by patients and EndoSisters.  If you scroll down a bit, there’s a list of states and countries; click on yours and it will bring you to the list of physicians in your area.  A lot of the links on this page are dead, but some of these physicians may still be in practice (I saw Dr. Cook on this list!).  I didn’t want to rob you of this resource if there’s a small chance it may pan out for you… (or whatever search engine you prefer).  Feel free to type any number of inquiries in the search field.  I started with “Endometriosis Specialist San Diego” to see what popped up in my area.  You have to scroll passed the paid ad links and start clicking and opening new tabs like a madman…This may be a helpful step in identifying facilities or physicians near your area that claim to specialize in Endometriosis and may be a starting point.  Take notes!  And make calls. This site allows you to find a doctor in your area who supposedly works with particular conditions.  Click on “Doctor Finder,” scroll down and click on “Conditions,” then click on “E” and find  Endometriosis. You’ll then be prompted to select your state and, once loaded, use Ctrl+F to search for your city.  Click on that link and it brings up a long (hopefully) list of physicians in your area.  Each physician entry identifies their fields of interest, as well as their education and licensing history, background, patient ratings, and comments. This is a website sort of like Facebook, but only for women who suffer from Endometriosis.  There is a “Provider Directory” on this site where women can submit their physician information and identify they treat Endometriosis.  If you haven’t already signed up, it may be a valuable resource for you.  However, don’t break the terms of service of you get the boot immediately (despite the best intentions…). Really?  I was surprised to bump into a Yelp search feed about Endometriosis (thanks to the Google search from above).  If you go to Yelp’s webpage and type in “Endometriosis” in the Find field and your location (i.e., San Diego, CA) in the Near field, you may be surprised to see what pops up.  It identifies patient reviews, as well as facilities that list they specialist in Endometriosis.

Step Four: Ask Questions (Balls)

So you think you’ve found your doctor (or a list of several doctors) to check with about treating your Endometriosis?  Get on the phone and call.  First, make sure they take your insurance! That’s a big one.  And if they don’t, ask about payment plans, financial assistance, etc.  Then let the receptionist know you’d like to either talk to the physician, physician’s assistant, or the office manager to answer some questions to see if they’re the right fit for you.  What’s the worst they can say? No?  Well, that’s okay.  They may insist you make an appointment…

Now what do you ask?  And make sure you write down your questions and bring them with you…otherwise you may be overwhelmed and forget (I know I do)!

Ask them about their educational and medical background. How many Endometriosis patients do they treat? How many Endometriosis surgeries have they performed? Which surgeries to they prefer? Have their surgeries/treatments been successful?  How do they feel about hysterectomies? How to they feel about pharmaceuticals (GnRH, pain killers, etc.) treatments?  Are they comfortable treating your Endometriosis?  What do they believe the cause of Endometriosis is?  Do they have a plan for your treatment?  Do they coordinate with others specialists for cases of Endo on the bowels, bladder, lungs, etc.? has an extensive list of questions you may want to ask, too (click here).

If you are not comfortable with the physician, their office, their staff, or any of their answers, walk away.  Keep searching.

Dr. Camran Nezhat has put together a list of five characteristics to look for when seeking your Endo specialist.  These areas include if they’re published or have been involved in studies/research about Endo, their experience, if they’re a specialist, their education, and (some consider this the most important) compassion.  You can read it here.

Just my Two Cents

An “Endo Specialist” doesn’t have to be someone who purely works at some well-known Endometriosis facility or is identified on some list.  My OB/GYN, Dr. Mel Kurtulus, is just a regular OB/GYN who happens to treat several patients with Endometriosis.  He also happens to be the man who diagnosed, and excised, my Endometriosis in 2014.

Did I know I had Endo when I met Dr. Kurtulus? No.  But would I go anywhere else for surgeries or treatment of my Endo?  No.  Dr. Kurtulus has answered all of my questions, supports my treatment plan, and is an incredibly skilled surgeon (he uses the DaVinci robotic system).  He listens to all of my questions and concerns, has excellent bedside manner, and his staff are amazing.  He may not be listed in any of these sites as an Endo Specialist, but I consider him one.

So what’s my point?  Don’t feel like you have to find someone who is labeled an “Endo Specialist.”  You just have to find someone that fits your needs and requirements.  And you will…through patience, research, and balls. Good luck!!  I hope this helps.



Endometriosis Association – Finding an Endometriosis Specialist – How to find a specialist

Endopaedia – Facebook page

Endopaedia map






~ Again, I am a layman.  I do not hold any college degrees, nor mastery of knowledge.  Please take what I say with a grain of salt.  If curious, do your own research 😉 Validate my writings.  Or challenge them.  And ALWAYS feel free to consult with your physician. Always.  Yours ~ Lisa




Frozen Embryo Transfers & Endometriosis


A lot of women have trouble becoming pregnant, whether or not they have Endometriosis.  The question has been raised : if you have Endometriosis and are undergoing frozen embryo transfer (FET), which treatment regimens and protocols have the highest successful pregnancy rate?

I myself have never considered IVF and had to do a bit of initial research on the differences between fresh and frozen embryos, IVF, etc.  I am so grateful an EndoSister asked this question; brought this struggle to my attention.  So if you already know about these, please bear with me as I learn.  Otherwise, skip passed these first few categories to the knitty gritty below 🙂

In vitro fertilization (IVF)

IVF is when eggs are collected from a woman’s ovaries, and are introduced to sperm in a laboratory (called insemination).  If an embryo develops from the egg+sperm concoction, it is then introduced into the woman’s womb.  If the wee embryo accepts this new home, a normal pregnancy can be achieved.

Usually, women take medications prior to the IVF harvesting to boost their egg production. These fertility drugs may increase the chances of one, or many, of the eggs “taking” to the IVF procedures, successfully producing an embryo.  The multitude of eggs harvested for the IVF procedure may be used at that time or frozen for later attempts.

Some women opt to have multiple embryos placed into their womb at once, again to increase their chances of at least one of the embryos developing into a healthy baby.  This can lead to multiple births, including twins, triplets…or even octuplets.   Others have their unused harvested eggs frozen to be used, or donated, at a later time.

Although it sounds simple enough, IVF is anything but.  It is not only costly financially, but emotionally.  There could be constant tests (both in facility and at home), the depression of procedures not working, the sorrow of losing an embryo during development, miscarriages, still births, failed insemination attempts, side effects of medications, the constant wondering “what if” and “when.”  It takes a resilient heart.  And plenty of women and couples endure.  And many have successful births…yet, many do not.

Fresh embryo transfers

Fresh embryos are just that : fresh; not frozen.  Eggs are harvested from the ovaries, and the clinics inseminate the eggs.  Once fertilization takes place, embryos begin to form.  Two to three days later, the woman is back in the clinic having the embryos transferred to her uterus (through a small tube device inserted through the vagina and cervix).  Timing is critical, as there literally is no time to waste.  And if conditions aren’t *just right*, the transfer may not take.

Frozen embryo transfers (FET)

Much like fresh embryos, the eggs are harvested, inseminated, and fertilized.  The resulting embryos are frozen for later use, although some may not survive the thawing process.  The longest-frozen embryo, with a successful birth, was a 20-year-old frozen embryo! Twenty years!  The mother was a proud 42-year-old woman!

Over the years, the processes have changed for freezing eggs and embryos.  Now the preferred method is vitrification.  Vitrifi-what-tion? A very, very, VERY fast way of freezing.  Consider it like flash-freezing a bag of peas.  Fast, effective, and preserves quality.  Vitrification now allows for a thaw survival rate of greater than 95%!  Amazing, considering in the past using the slow-freeze method, a lot of eggs and embryos were lost during the thaw.

Studies have indicated that frozen embryo transfers yield a higher success rate than fresh transfers, boasting up to a two-thirds increase in successful pregnancies.  Why?  Theories have to do with fertility medications stripping the lining of the uterus from it’s cushiony-goodness (endometrial lining), creating a suboptimal home for the embryo.  Fresh transfers don’t offer a lot of time to optimize the uterus, and the women are still recovering from their recent egg harvest (their bodies may be stressed, bloated, or in pain still).  Meanwhile conditions can be timed (allowing the lining to rejuvinate, the woman to heal) with frozen-then-thawed transfers.  There is far more control in the hands of the doctors and women.

Endometriosis and infertility

It is widely accepted as common knowledge that Endometriosis can cause  infertility; however, it may not be well-known how or why it does so.  They say 30%-50% of women with Endometriosis struggle with infertility.  It may affect egg and embryo quality, or weaken uterine lining for implantation of the egg,  or the inflammation and immune system responses may breed a less-than-optimum fertile environment in the body, or the scar tissue or implants may lead to blocked/twisted/damaged ovaries or Fallopian tubes, or it may just lead to a greater chance of miscarriages.  Dr. Glatstein of IVF New England explains how Endometriosis may interfere with fertility in a short video here.

Endometriosis and IVF

The Society for Assisted Reproductive Technology (SART) released figures from 2013 of IVF procedures performed in women with Endometriosis, and the success rates of a live birth.

Using thawed embryos (aka once frozen…), the following percentages of live births were achieved in women with Endometriosis:

  • Women younger than 35 years old : 42.3% (out of 823 cycles)
  • Women between 35-37 years old : 39.8% (out of 414 cycles)
  • Women between 38-40 years old : 38.1% (out of 227 cycles)
  • Women between 41-42 years old : 29.8% (out of 48 cycles)

For comparison, IVF using fresh embryos in women with Endometriosis were :

  • Women younger than 35 years old : 42.0% (out of 1,818 cycles)
  • Women between 35-37 years old : 29.8% (out of 721 cycles)
  • Women between 38-40 years old : 21.1% (out of 427 cycles)
  • Women between 41-42 years old : 14.7% (out of 116 cycles)

Unfortunately, I do not know the Stages of Endometriosis with any of these women, nor their pre-IVF treatment for their Endo.

While some doctors believe in laparoscopic surgeries prior to IVF treatments to increase the chances of a successful procedures, others do not share those beliefs.  Studies exist which support both ideas : endometriosis does (and does not) affect IVF outcomes…Just as our disease is a great big gray area, so is IVF and Endo…Other studies have shown that the removal of endometriomas from the ovaries may reduce ovarian reserve and hinder the efforts of egg retrieval for IVF.  If you would like to consider surgery prior to IVF treatments, please have a few long discussions with your doctor about the potential influence with IVF procedures.

Studies & Things

In 2005, a study examined the differences of successful pregnancies and live births in women with Stage I & II Endometriosis versus women with Stage III & IV Endometriosis.  Ninety-eight (98) women with confirmed Endometriosis underwent IVF between 1996-2003.  Each cycle using frozen embryo transfers had higher success rates than those without.  It also found that women with Stage I & II Endometriosis were more likely to have successful IVF procedures, but women with Stage III & IV had less successful chances.  “Stage III/IV endometriosis means a worse prognosis for IVF/ICSI treatments compared to milder stages or tubal factors.” The authors suggested implanting two embryos in women with Stage III or IV, to increase the chances of a successful live birth.

In 2011, an Indian woman was the first successful pregnancy in Pune, India having used FET.  Her eggs were harvested on one day, fertilized the next day, the embryos were frozen, and implanted five months later.  At the time the article was written, she was successfully pregnant in her first trimester.

In 2011, a study was performed by reviewing scientific and medical literature to find out if using fresh or frozen embryos in IVF protocols increased the chances of live births in women with Endometriosis.  They reviewed the figures for women from 2000 to 2008, and 415 women had Endometriosis (representing 5.7% of the women in the entire literature review).  Their review found that there was no statistical differences between women with Endo and women without Endo using fresh embryos for IVF (as far as the chances of clinical pregnancy rates, live births, or  miscarriages).  However, they did find that when using frozen embryos (FET) with Endometriosis sufferers, the clinical pregnancy rate was much higher (18.2%).  This study suggested that women with Endometriosis should treat with GnRH antagonists (i.e, Lupron Depot), to help “better the environment” for the embryo, hopefully increasing the chances of a pregnancy and successful live birth.

Another 2011 study followed 29 women with Endometriosis who had multiple prior failed IVF attempts.  Of the 29 women, all underwent new laparoscopic surgeries to clear their bodies of Endometriosis and adhesions.  Twenty-two of them conceived after their surgeries; 15 naturally and 7 using IVF procedures.  The authors suggest laparoscopy may be a valid treatment option for Endo sufferers seeking to conceive and that the Stage of severity of Endo may affect the outcome of the pregnancies:

  • Of the four women with Stage I Endometriosis, 100% of them conceived;
  • Of the six women with Stage II, 83% conceived;
  • Of the six women with Stage III Endo, 83% conceived; and,
  • Of the 13 women with Stage IV Endo, 62% conceived.

An article published in April 2013 by Dr. Ryan Funk shared a story of a woman with Endometriosis who added acupuncture to her pre-IVF routine.  Previously, she had a laparoscopic surgery to excise the Endometriosis, had one Fallopian tube removed, and has unsuccessfully undergone five fresh embryo transfers and two frozen embryo transfers.  After a consultation with Acubalance Wellness Centre, she decided that two months prior to her FET procedure, she would start acupuncture, as well as dietary and supplement changes according to their recommendations.   For those two months, she attended weekly acupuncture sessions and noticed a difference in her periods and pain.  Because of those differences, she decided to postpone her FET procedure and continue acupuncture and her new dietary/supplement/herbal lifestyle.  Two months later, while keeping up with her new routine, she became pregnant.  Naturally.

A July 2013 study reviewed the data and studies of 8,984 women, analyzing their Endometriosis stages and infertility treatments.  The 13-page study  concluded that women suffering from Stage III and IV Endometriosis had poorer implantation and pregnancy rates than those with Stage I and II in IVF treatments.  Interestingly enough, the authors concluded the study by stating, “A demonstration of reduction of IVF clinical pregnancies in women with Stage III/IV endometriosis does not necessarily mean that treatment of endometriosis will restore the clinical pregnancy rates to the level expected in women without Endometriosis.  Therefore this evidence does not justify advocating medical or surgical treatment of Endometriosis for these women, as a favourable risk benefit analysis of intervention in this clinical context is currently absent.”

At a 2013 Medical Conference (put on by the Endometriosis Foundation of America), Dr. Jamie Grifo spoke about the importance of conducting pre-implantation genetic diagnoses on potential embryos to help achieve more successful pregnancies.  Dr. Grifo said, “Biological clocks tick a little bit faster for women who have endometriosis,” and would like to see women with Endometriosis have their eggs frozen earlier for optimum fertility.  He ends his speech with these very powerful words, “Egg freezing is an option to preserve fertility. It is a hope, it is not a promise. It is an option, not an obligation. Not something people should do but something that people should know about. It is very costly, it is not 100 percent…Give patients informed consent. Let patients make the decisions, let them know their options and let them make decisions. Do not let someone to make decisions for you…”  You can watch the video and read the transcript here.

A 2014 study found that women who received acupuncture prior to their FET procedures had higher rates of embryo implantation, clinical pregnancy and live birth than women who did not receive acupuncture.  The acupuncture was shown to also improve the pattern condition and blood supply of the endometrial lining.  It also “improved HOXA10 expression. Higher HOXA10 is associated with greater endometrial receptivity and good pregnancy outcomes. HOXA10 expression is lower in the uteri of women with hydrosalpinx, PCOS, and endometriosis.”  What’s HOXA10 (I had to look it up, too…) : it’s a protein gene. Sciencey stuff…But how much acupuncture did these women in this study receive?  They underwent six sessions per cycle for three cycles (so, doing that math that’s about six times a month for three months).

Dr. Lim wrote in her 2015 blog about a study that found that women who incorporated acupuncture into the lives and IVF treatments has a 91%  increased chance of a live birth as opposed to women who did not receive acupuncture.  The study concluded that “Acupuncture given with embryo transfer, improves rates of pregnancy and live birth in women who are undergoing in vitro fertilisation.”

What Other EndoSisters are Saying

An article published in 2009 follows the story of “Maria,” and her attempts to conceive.  She and her husband gave up drinking and consulted with a nutritionist.  She underwent monitored cycles, including regularly-scheduled scans and blood tests.  She also used a daily inhaler, which suppressed all hormones, as well as injections to accelerate egg production (she notes these injections caused her Endo to flare up…).  After having her eggs harvested, three days later she returned to have the embryos transferred, and she learned two weeks later that she was pregnant.  Another three weeks passed before she learned they were having twins!  When she had her eggs initially harvested, they had them frozen.  When she and her husband decided it was time to “try again,” she contacted the center to schedule a transferring procedure for the remaining embryos.  She was devastated to learn that all six embryos did not survive.  They pressed forward and scheduled an IVF procedure for later that month, and once again conceived twins.  She offers this bit of advice, “Results can be skewed by all sorts of things, so go and talk to the doctor yourself. Take their advice: if it means sacrifices like not drinking for a few months to increase your chances, just do it.”

In 2012, “9ay” asked Dr. Fiona McCulloch what could be done naturally to help increase her chances of a keeping her Endo at bay and achieve a successful IVF pregnancy.  9ay was diagnosed with Stage IV Endometriosis and had undergone excision surgery four months prior.  Since, she had tried to conceive naturally and by fresh embryo IVF, but failed.  To aid in her IVF journey, she was taking Lupron to down regulate, and was also taking Estradiol Valerate tablets to increase her endometrial thickness.  Dr. McCulloch responded that she has had several Stage IV Endo patients achieve successful IVF pregnancies.  She suggested taking EGCG tablets (from green tea) to fight inflammation and cut out gluten to help avoid any immunological issues it may create.  She additionally suggested undergoing allergy tests for additional Endo triggers, as well as a complete thyroid panel to check for thyroid antibodies.

In 2012, Sarah wrote about her IVF journey on Bloggers for Hope.  A few years after her first excision surgery, Sarah and her husband decided it was time to try to make a family.  She stopped her birth control pills and immediately suffered horrible periods and pain.  A few months later, she endured yet another surgery to remove her Endo implants and adhesions.  She and her husband tried to conceive naturally for a few moths, but to no avail.  She took Clomid and underwent three separate IUIs (a procedure where sperm is injected directly into the uterus during ovulation).  When those did not work, they put her on Lupron for a month (to regulate her estrogen levels), followed by an IVF cycle.  She was also on Folostrum at that time.  Her doctors retrieved 23 eggs, inseminated 19 of them, froze a few, and transferred two of them five days later.  *voila* Henry was conceived.  Later, when they decided it was time to try again, they thawed the remaining six frozen embryos.  Two did not survive the thaw, and the other four were transferred during two separate FET sessions; each procedure failing.  Sarah writes, “After the final FET we knew we were done.  Both financially and emotionally we were at our limits.  We decided to walk away and hold on to how lucky we are to have our sweet Henry.”

In July 2013, “luv01314” posted in a forum that she has Stage IV Endometriosis, along with Adenomyosis.  She had previous failed attempts at fresh IVF, a laparoscopic excision surgery in April 2013,  as well as naturally trying to conceive for two months, without success.  She was going to try FET next.  Many women responded with their own stories (some successful, others not).  The difference? It all depends.  On what? On the woman, the method of freezing, the odds, Luck, God’s will, the Fates, etc.  There really is no way of knowing.  Some women used Lupron or birth control pills to prep for the IVF; others did not. One woman was quoted a 98% success rate for FETs, yet her child died in a miscarriage.  There is no guarantee.

In 2013, an Anonymous EndoSister was able to conceive after her fourth fresh IVF treatment.  She had some frozen embryos to try again later, once their son was a bit older.  Her question was how long can she wait before her Endo (and age) became a damning factor in IVF procedures.  Sisters offered advice of her trying to get another laparoscopic surgery before attempting FET procedures (to clean out her body and give those embryos a fighting chance).  Others suggested a three-month course of Lupron Depot prior to the FETs.  And yet others recommended both the laparoscopy and the three-months of Lupron Depot prior to trying the FET procedures.  I don’t know what course, if any, she chose.

Did I Answer the Question?

I’m not quite sure I did.  It seems each IVF (whether fresh or frozen) experience was an individual experience, none in common with the other.  It depends on sooo many factors, but what I did find is:

  1. If preparing for an IVF procedure, take care of your body.  Attempt to reduce your Endometriosis (and inflammation) with diet or supplements (always discuss with your doctor first).  Try to give your body the best fighting chance it has to not only be healthy, but to create a warm and welcoming home for your child.
  2. Consider acupuncture prior to IVF.  Studies have shown it may help increase your chances of conception.
  3. Perhaps talk to a nutritionist.  What food triggers your Endo symptoms?  What food calms your symptoms?  What food may be best to facilitate the IVF and health of your body, and the health of your child?
  4. The Stage of Endometriosis may affect the outcome of IVF treatments, and the use of more embryos during IVF may be warranted.
  5. Fertility drugs, hormones, and GnRH antagonists may be a viable regimen prior to harvesting eggs and implanting embryos.  Many women have taken them and had successful IVF procedures.  Then again, many have not.
  6. Talk to your doctor.  Not only about your fears and questions, but about your desires.  Discuss alternatives to medication you may not wish to take.  Ask for candid answers regarding percentages and best-case/worst-case scenarios.  Be informed.
  7. Techniques for freezing, and thawing, eggs and embryos has changed over the decades and has a far greater success rate than in the past.
  8. And most importantly : you are not alone in this struggle.  You have friends and family, as well as the countless other women who have endured (and are enduring) the same thing.  Seek out support groups or online forums.  Find that camaraderie, those shoulders to lean on, the advice of those who have been there.

What will be, will be.  Wishing all of you the best of luck in your efforts to create a family.  I gave up long ago, and am at peace with that decision (although sometimes it still stings).  May you have the strength to endure.

Yours, Lisa


Acubalance Wellness Centre – (Article, April 2013) Endometriosis Pregnancy Success : A Case Study

Advanced Fertility Center of Chicago – IVF & Lupron

American Society for Reproductive Medicine – Endo and infertility

Babycentre – “luv01314” Q&A forum

BJOG – (Article, July 2013) The Effect of Endometriosis on In Vitro Fertilisation Outcome : A Systematic Review and Meta-Analysis

Bloggers for Hope – Sarah’s story of infertility and Endometriosis

Chances Our – blog with notes from Endometriosis Conference 2013

CNY Fertility – Vitrification for Embryos and Eggs

DC Urban Moms and Dads – Anonymous Endo Sufferer’s IVF Journey

Dominion Fertility – Do I Need Endometriosis Surgery if I am Planning to Pursue IVF

DrG’s Fertility Blog – Do I Need Endometriosis Surgery if I am Planning to Pursue IVF

Dr. Helena Lim – The Benefits of Acupuncture in IVF

Endometriosis Foundation of America – 2013 Medical Conference Video and Transcript of Dr. Jamie Grifo, “Egg Freezing as an Option for Endometriosis Patients”

Fertility AuthorityInfertility Research Shows Frozen Embryo Transfers Yield Higher Pregnancy Rates

Fertility Centers of New England – IVF is a Very Good Treatment for Infertile Women with Endometriosis

Human Fertilisation & Embryology Authority – Embryo Transfer

Human Fertilisation & Embryology Authority – Maria’s IVF success story

Information Acupuncture Infertility Research – (Abstract, 2014) Acupuncture Improves Receptivity of Endometrial Lining in IVF Frozen Embryo Transfer

IVF1 – Endometriosis IVF – “9ay” Q&A with Dr. Fiona McCulloch

IVF New England – 2014 Video of Dr. Glatstein explaining how Endometriosis can interfere with fertility

Medline Plus – IVF – (Article, June 2011) Laparoscopic Treatment of Endometriosis in Patients with Failed In Vitro Fertilization Cycles

Oxford Journals – (Article, May 2005) Effect of Endometriosis on IVF/ICSI Outcome : Stage III/IV Endometriosis Worsens Cumulative Pregnancy and Live-Born Rates

Shady Grove Fertility – IVF : What You Need to Know

Society for Assisted Reproductive Technology – stats re IVF and FET

The Infertility Center of St. LouisBaby Born from 20-Year-Old Frozen Embryo

The Times of India – (Article, Nov. 2011) Woman Conceives Successfully Through ‘Frozen Eggs” Technique

US National Library of Medicine – (Abstract, June 2011) Live birth rate in fresh and frozen embryo transfer cycles in women with Endometriosis

Victoria Fertility Centre – Frequently Asked Questions

Vitrolife – vitrification explanation

~ Again, I am a layman.  I do not hold any college degrees, nor mastery of knowledge.  Please take what I say with a grain of salt.  If curious, do your own research 😉 Validate my writings.  Or challenge them.  And ALWAYS feel free to consult with your physician. Always.  Yours ~ Lisa

Reader’s Choice : Letrozole & Endometriosis

Photo courtesy of JLD

One of my local EndoSisters has started a new medication to help with her Endometriosis pain and symptoms, based upon the recommendation of her new physician.  It’s Letrozole, which I had never heard of.  And she asked me if I had any info on it…so…now I’m inspired to do some research!

What is Letrozole?

Letrozole is the generic name for Femara, a drug classified as an aromatase inhibitor.  What is aromatase?  It’s an enzyme that is crucial in the creation of estrogen. Aromatase inhibitors have been FDA approved for treating breast cancer in post-menopausal women.  However, it has piqued the interest of the medical community in controlling Endometriosis symptoms.  It is not yet FDA approved for this treatment, but is used as an off-label, accepted treatment among the medical community. As of today’s research, there are no indications that drug manufacturers are going to seek FDA approval for aromatase inhibitors to treat Endometriosis.

Courtesy of: Michiko Maruyama,,
Used with permission: Michiko Maruyama,,

Endometriosis has been theorized to be a largely estrogen-driven disease.  Aromatase has been found in increased amounts in the endometrial tissue of women with Endometriosis, as opposed to women without.  Some physicians are now prescribing aromatase inhibitors when no other traditional treatments have helped with a woman’s Endometriosis symptoms.  The hope is that by inhibiting (blocking) aromatase production, it will ease Endometriosis symptoms and progression.  Aromatase inhibition may give rise to ovarian stimulation (widely used to increase fertility) and ovarian cysts; and therefore are often used in combination with other drugs, such as Norethindrone (progestin), Zoladex (GnRH agonist), or birth control pills to help women with Endo to avoid further production of painful ovarian cysts, etc.

Side Effects:

Specifically, Letrozole has been known to cause fatigue,drowsiness, and dizziness, especially when combined with alcohol or when the person is exposed to heat.  A woman who is newly taking Letrozole must be cautious when driving until she truly knows how her body responds to the medication.

The FDA has released an entire list of side effects women complained of while treating with Letrozole for their breast cancer: angina (chest pain), arthritis, bone fractures, cerebrovascular/TIA (similar to a stroke), constipation, diarrhea, endometrial cancer, endometrial proliferation disorders, fractures, dizziness, edema (swelling), fatigue, headaches, hot flashes/flushes, light-headedness, myalgia (muscle pain), myocardial infarction (heart attack), nausea, night sweats, osteoporosis, other cardiovascular issues, other endometrial disorders, thromboembolic event (strokes), vaginal bleeding, vaginal irritation, vomiting, and weight increase.  To review their list and the percentages of these occurrences, please see Page 20 of their report, found here. Some women have also complained of a decrease in their libido.

When used in combination with a progestin or birth control pill, aromatase inhibitors do not cause osteoporosis; however, if used with a GnRH agonist, osteoporosis may develop.  Your physician may recommend frequent bone scans to ensure bone loss is not occurring while treating.  They may also recommend you take Calcium and Vitamin D during your treatments. has an ongoing list of testimonials and reviews of women who take Femara (Letrozole) and what their experiences and side effects have been.  I know that my EndoSister’s going through a lot of joint pain at the moment.  Almost everyone complained of bone and joint pain; stating:

“Then–suddenly I was having bone pain in legs (felt like someone took a 2×4 and whacked me across the leg bones)–joint pain in shoulders, knees, ankles, feet, and fingers.”

“I started having joint pain in the knees, feet, and fingers. Also fatigue and muscle weakness. Feel like I have aged 10 years.”

“I have experienced severe bone and muscle pain to the point that I find it difficult to walk up and down stairs.”

“I hurt so badly I could barely get out of bed or walk down the halls at work”

Many women stopped taking the drug because of the intensity of the side effects.  To read all of the user reviews, click here.

Clinical Trials:

In 2004, a pilot study was published in the Fertility and Sterility journal on the effectiveness of managing Endometriosis symptoms using Letrozole.  The study involved 10 women who did not respond to surgical or medical treatment of their Endometriosis.  They were given 2.5mg of Letrozole, 2.5mg of Norethindrone, as well as Calicum Citrate and Vitamin D supplements for six months.  The study concluded that there was a “marked reduction of laparoscopically visible and histologically confirmed endometriosis in all 10 patients and significant pain relief in nine out of 10 patients who had not responded previously to currently available treatments,” and they strongly urge the use of this regimen in treating Endometriosis symptoms.

Another study in 2004, again published in the Fertility and Sterility journal, followed the treatment of two women.  They were given Anastrozole (a different aromatase inhibitor), as well as a progesterone pill, calcitriol, and rofecoxib for three months.  Both of the women had a rapid reduction in their pain and symptoms, and remained so even 24 months after receiving the treatment.  One underwent a diagnostic laparoscopy 15 months after treatment and was confirmed free and clear of any Endometriosis implants.  Both women were able to conceive within 24 months of treatment.

The Middle East Fertility Society Journal published an article in 2014 which reviewed several different types of drugs emerging in Endometrosis treatment, including aromatase inhibitors.  It also summarizes several past studies regarding Endometriosis and aromatase inhibitors.  Curious?  Click here.

In 2015, a study was published in BioMed Research International of a clinical trial of Letrozole and its effectiveness in decreasing the size of endometrioma (blood-filled cysts).  The lead author of this study is also the doctor whom prescribed Letrozole to my EndoSister who inspired today’s blog.  It was a three-month study of eight women, each of whom agreed to the “off-label and unproven therapy,” in the hopes it would reduce their Endometriomas and Endometriosis pain.  They were given daily 5mg doses of Letrozole, as well as daily 5mg doses of Norethindrone (the FDA-approved “add back” therapy used with Lupron Depot).  A typical daily dose of Letrozole is 2.5mg, but since this study was only three months long, they upped the dosage.  And Norethindrone was used “…to minimize the negative effects of induced hypoestrogenemia and thus make the letrozole therapy more tolerable.”  Hypoestrogenemia is a deficiency of estrogen in the blood. Over the three-month period, they found the Endometriomas decreased by 50%, and the women had significant reductions of pelvic pain and painful sex.  More studies are needed, including double-blind tests with placebo, as well as longer studies, and smaller doses. It is their hope that these studies will lead to a lesser need for surgical intervention in suppressing the pain and manifestations of Endometriosis.

I encourage you to look online for a plethora of additional studies regarding aromatase inhibitors and Endometriosis.  Or you can check out the studies listed by Northwestern University Feinberg School of Medicine’s Department of Obstetrics and Gynecology, here.  There were just too many to summarize.


Although the treatment of Endometriosis with aromatase inhibitors is not approved by the FDA, and there’s no indication that such approval will be sought, the studies and trials do appear to support the notion that they help reduce and control the pain and progression of this disease.  If you are able to swallow the idea of an experimental drug, you may want to talk to your physician about this treatment regimen.


Advanced Fertility Center of Chicago

Fertility and Sterility (2004; Article) : Treatment of Endometriosis and Chronic Pelvic Pain with Letrozole and Norethindrone Acetate : A Pilot Study

Fertility and Sterility (2004; Article) : Successful Treatment of Severe Endometriosis in Two Premenopausal Women with an Aromatase Inhibitor

Hindawi Publishing Corporation (2015; Article) : Reduction of Endometrioma Size with Three Months of Aromatase Inhibition and Progestin Add-Back


Northwestern University Feinberg School of Medicine


Science Direct (2014: Article) : Emerging Treatment of Endometriosis

U.S. Food and Drug Administration : Femara (Letrozole tablets) drug information page

*Sunday is “Reader’s Choice” where my readers, friends, and family get to suggest a topic.  Today’s topic came from an my my friend, JeriLynn, who asked, “Do you happen to have anything about the new medication I’m on??”  Again, I am a layman.  I do not hold any college degrees, nor mastery of knowledge.  Please take what I say with a grain of salt.  If curious, do your own research 😉 Validate my writings.  Or challenge them.  And ALWAYS feel free to consult with your physician (or in this case, attorneys). Always.  Yours ~ Lisa

Reader’s Choice : C-Sections & Endometriosis

A friend asked me to look up any connections between Endometriosis and Cesarean Sections.  So, here we go.  Lots of science in this one!  Some studies show that less than 1% of women who undergo a cesarean section end up developing incisional Endometriosis (Endometriosis in or along the c-section scar).  However, that tiny little 1% number has a staggering amount of studies involving a lot of women who suffer from this form of Endo.

What is a Cesarean Section?

A cesarean section (aka a c-section) is a surgery performed to deliver a baby through an incision in the mother’s uterus and abdomen, rather than vaginally.  C-sections can be performed by choice or out of medical necessity (physical abnormalities or other health issues or there is a complication with the pregnancy).  Also, if a woman has delivered before by c-section, the chances of a successful vaginal delivery may decrease, and subsequent c-sections may be recommended.

csectionThe Atlantic reported that many women in many countries around the world are coerced into have a cesarean section instead of a natural birth due to time constraints, while others bribe their physicians to perform a c-section in order to secure a bed in an overcrowded hospital.  Some refer to c-sections as an “economic machine,” one physician can perform up to eight procedures in a day.

Why is this a concern to women or the medical community? Women should be able to choose to give birth naturally or via c-section.  Some women have no choice.  The concern arises out of an increasing number reports of non-medical emergency cesarean sections; and the coinciding increasing reports of women developing Endometriosis and endometriomas inside or adjacent to their scarring.

How does Endo form in a scar?

There are a few theories about how Endometriosis and/or endometriomas can form inside or adjacent to a surgical scar.  The first being surgical transplantation.  In simple terms: it was picked up somewhere along in the abdominal cavity during surgery and literally transplanted (either by surgical tools, sutures, fluids, etc.) onto the abdominal wall.  As the scar heals closed, the cells continue to grow and may begin to manifest symptoms.  Another theory is migration.  The endometriosis cells and implants are transferred through the lymphatic or venous systems and deposited to various sites around the body.

It’s just like everything else we hear about Endometriosis : the medical community isn’t sure how or why it happens, but there are many, many documented cases of it happening. Thankfully, procedures are in place to help diagnose, excise, and treat these implants.  And, if we are lucky, we will one day have the medical understanding and wide-spread acceptance of a cause, and a cure.

Diagnosis & Treatment

As you will read in the studies below, the gold standard in diagnosis is the usual : surgical excision.  Many studies report a lack of relapse/recurrence after the mass is excised.  Others report a small recurrence, with a repeat surgical procedure.  Some even suggest ongoing medical referrals and the usual medical treatments of hormones and/or hormone suppressants.


The lesson of today’s research and blog (in case you don’t want to read through the following studies) is : if you have an abdominal scar which now has a lump, that may or may not cause you pain, please go have it checked out…Hell, even if it isn’t growing alongside a scar.  Lumps can be very, very bad; maybe even cancerous.  They can also be harmless, but…why take a risk? Just go have it looked at…


In 1980, the Obstetrics & Gynecology journal published a study which reviewed the cases of 17 women over five years.  These women all had scar Endometriosis and 71% of them had previously undergone a hysterotomy (i.e. cesarean section).  Each complained of pain and swelling of their surgical scars around the time of their periods.  It turns out 24% of them were diagnosed with Endometriosis after undergoing excision surgery and biopsies.

A study published in 1996 states that 0.1% of women who have had a cesarean section suffer from an endometrioma in the incisional scar; and 25% of those women have pelvic Endometriosis.  The endometrioma pain may worsen with coughing or movement.  This study reviewed the cases of four women with incisional endometriomas: all four women complained of a painful lump (2 were misdiagnosed as hernias) and the lumps were each removed.  Biopsies of each of the four lumps were confirmed as Endometriosis.  It concluded that misdiagnoses of abdominal lumps needs to be addressed; as many lumps being operated on as hernias may, in fact, be Endometriosis.

In 1999, seven women were studied over a two year period who shared symptoms of a painful abdominal lump.  All of them had some sort of abdominal surgery (six cesareans, two laparoscopies, and one hysterectomy), and only one had a prior Endometriosis diagnosis.  Their symptoms began anywhere from six months to 10 years post-surgery.  Diagnostic tests and imaging studies were performed prior to surgery; the masses were surgically removed and biopsied.  Half of these women were found to have an endometrioma.  One patient even had a recurrence, which was excised 22 months later.

In 1999, a Korean study documented the findings of Endometriosis of a cesarean scar turning into clear cell carcinoma. Cancer.  It is considered to be the first of its kind.  The 54-year-old patient had been complaining of a growing mass over the past three months.  Over 20 years ago, she had undergone two prior cesarean sections.  Imaging studies revealed the mass, and it was surgically excised.  A biopsy showed that it was clear cell carcinoma, with a focus on Endometriosis.  She then received six weeks of radiotherapy.

A study published in 2000 reviewed 10 cases of women with incisional Endometriosis.  All 10 of these women had a history of a cesarean sections, and had reported a slow growth of a “painful lump” along their incision scar.  Some even had symptom changes during their menstrual cycles.  Each woman had this lump surgically removed.  This study has hopes of raising physician awareness of a patient’s medical history, specifically for Endometriosis, prior to performing a cesarean section.

A European study published in 2002 covered two women who complained of growing, painful masses along their cesarean scars.  Each described their pain as strongest just before they started their periods.  Each woman underwent excision surgery and the lump was biopsied: Endometriosis.  The author is worried that this phenomena is more common that has been previously thought, and these painful lumps need to be surgically excised.

Another 2002 European study examined six women, ages 20-34 years old who had undergone previous cesarean sections.  Each of these women had complaints of a painful lump along their surgical scar, some have been complaining of the pain for seven years! The lumps were surgically removed and biopsied and were classified as endometriomas.  The authors of this study suggest that the surgical incisions of cesarean patients need to be “cleaned thoroughly and irrigated vigorously with high-jet saline solution before closure.”

A Brazilian study published in 2002 reviewed 199 patients who complained of pelvic pain from 1998 to 2000.  Of those 199, 116 agreed to have a diagnostic laparoscopy performed.  Of those women with chronic pelvic pain, 67% of them had prior cesarean sections, 52% suffered from adhesions, 34% were diagnosed with Endometriosis, 32% had pelvic inflammatory disease, 11% suffered from pelvic varices, and 7% had leiomyoma.  The study concluded the cesarean sections may be a factor in chronic pelvic pain complaints and may become a growing public health concern.

A study published in 2005 reviewed 11 cases of women who also complained of a painful lump along a previous surgical scar.  This lump also increased in size during their menstrual cycles.  The difference in this study as opposed to the 2000 study was these 11 women had various scars: cesarean, episiotomy, or even a vaginal cuff surgery; it was not limited to only cesarean sections.  Among these women, the onset of their symptoms occurred at various stages after their surgeries: some women complained of these symptoms 2 years after their surgery; some 11 years.  The women all had their painful lumps removed and biopsied: each one was positive as Endometriosis.  This study concludes that incisional Endometriosis seem to be common in women who have undergone a cesarean section, or other gynecological surgery, and warns that caution needs to be practiced during any surgery to avoid the surgical transplantation of endometriosis cells.

A study published in 2006 reviewed 15 patients who were post-cesarean section.  Sixty-six percent of the women complained of abdominal pain during their menstrual cycles.  The first symptoms’ appearance ranged between 11 months to five years.  Each patient underwent a surgery, and any lesions discovered along the scar tissue were removed.  This study noted, “[t]he surgical treatment has to be sufficiently wide to avoid all recurrence. No means of prevention has proved its efficiency.”  In other words, remove more than just the lesion/implant just to be safe…and prevention is not guaranteed…

In 2012, a study was published in The Journal of Obstetrics and Gynecology Research that discussed the medical histories of 18 patients who were diagnosed with Endometriosis of surgical scars from 2008 to 2010.  Each had reported the slow growth and swelling of a painful mass in or near their incision scars (for some, the pain worsened during their periods).  Imaging studies were captured on all patients and surgeries were performed to remove the masses.  Each mass came back from biopsies as abdominal wall Endometriosis.  The women underwent two years of follow-up examinations with no events of recurrence.

A study published last year focused on pelvic adhesions in women who had cesarean sections more than a year ago.  In total, 308 women underwent transvaginal and transabdominal ultrasounds and it was discovered that 45% (nearly half) suffered from pelvic adhesions, and 79 also had adhesions in their vesicouterine pouch.  It was discovered that “[t]here was a significant association between the presence of anterior compartment adhesions and chronic pelvic pain.”  Although not focusing on Endometriosis, this study did help show that adhesions may develop after any surgery or internal trauma, and those adhesions may cause significant pain.

A 2015 published study focused on a 27-year-old woman who had complaints of a painful mass for the past 2 years.  She had a previous cesarean section and the mass grew adjacent to her scar, and would increase in size.  The mass was brown to black in color and was also visible on an ultrasound.  The clinical diagnosis said it could haven been either a suture granuloma, hematoma, melanoma and desmoid tumor.  The patient underwent fine needle aspiration cytology, aka FNAC (which is when a skinny needle is inserted and a small sample of tissue is removed and examined) and the tissue was biopsied and found to be Endometriosis.  She then underwent surgery to excise the mass, which was confirmed as Endometriosis in pathology tests.  She did not have any Endometriosis located anywhere else, nor did her symptoms return.  The authors believe that the FNAC procedure could be a valuable tool in pre-operative diagnoses of abdominal wall Endometriosis.

A 2015 Indian study reported that a 32-year-old woman had a c-section six months ago, and now had a lump which had been growing in size and increasing in pain, especially during her menstrual cycle, over the past three to four months.  Initial diagnoses noted it may have been a dermoid cyst, a foreign body, a lipoma, or just an abscess.  After an ultrasound, the pre-operative diagnosis remained a “foreign body granuloma.”  She was given a local anesthetic, and the mass was removed and biopsied.  Endometriosis… The authors believe that the cause of this incisional Endometriosis was surgical transplantation, although she had no history of pelvic Endometriosis.  They stress, that “it is strongly recommended that the used sponge should be discarded immediately after cleaning the uterine cavity, the suture material used for uterus should not be reused while closing abdominal wall, and finally the surgical area should be cleaned thoroughly and irrigated with saline solution before closure.”  They further note that although imaging studies and FNAC techniques may help in a pre-operative diagnosis, surgical excision is still the best way to diagnosis and treat abdominal wall Endometriosis.

A study published on February 18, 2015, studied 17 cases of abdominal endometriosis over a 12-year period.  Each study participant had a previous abdominal surgery.  The 17 cases commonly shared complaints of a painful mass that worsened and grew during their periods (see Figure 1).  Their painful symptoms began anywhere from 1-15 years after their surgeries.  Each mass was surgically removed, along with a margin of adjacent tissue in order to avoid missing some cells and allowing for recurrence (unfortunately, one woman did have a relapse and underwent a second excision surgery).  And 100% of the biopsies came back as Endometriosis.  One. Hundred. Percent.  But how many of these women had Endometriosis elsewhere in their bodies : only 14%.  As a side note, the FNAC procedure was used prior to surgery in these women as well (see above-referenced study) and again was noted as a possible diagnostic aid.


An April 2016 study published in the International Surgery Journal discussed a 24-year-old woman who had complaints of a painful bump for 2 months.  She had two prior C-sections, one 4 years prior and another 2 years ago.  It was surgically removed and biopsied and found to be Endometriosis.

A July 2016 study was about three women who suffered from Endometriosis in their scars.

  1. A 40-year-old woman had two prior cesarean sections and had been complaining of a lump near her bellybutton along her c-section scar for the past two years.  It became painful and swollen during her period. It was excised and biopsied, confirmed as Endometriosis – and her symptoms faded.
  2. A 36-year-old woman also had two prior cesarean sections.  Her pain began six years ago, over her c-section scar, and felt like a burning/pricking sensation beneath her skin and would begin and end with her period. When it was removed, her surgeons discovered it was filled with “chocolate-covered fluid” (sound familiar?) and was invading her skin and muscle tissue.  It was biopsied, and … Endometriosis.  She had routine follow-up visits for the next two years : still symptom-free.
  3. A 33-year-old woman had a c-section two years ago.  She developed a brown lump on her scar, which became painful during her periods.  It was excised, and confirmed to be Endometriosis.  Years later, still symptom-free.

A December 2016 study was of a 27-year-old woman who had three previous c-sections.  For about a year, she’d had a lump in her belly button which caused her “constant pain” that also flared up during her periods and had clear to cloudy discharge at times.   Upon physical examination, it caused her pain when it was touched.  An ultrasound was performed and it appeared to be a cyst.  She underwent an explorative laparoscopy: her uterus was adhered to her abdominal wall, likely due to her previous c-sections and the lump was removed from her umbilicus.  Biopsy: confirmed it was Endometriosis.

An article published in January 2017 focused on a woman who had a C-section 10 years ago. She had no previous history of Endometriosis and went to the emergency room because of the development of a painful lump along her stomach, very close to her C-section scar, that she had noticed a few days ago.  Interestingly enough: she was on Day 3 of her period.  Imaging studies showed a mass, and she underwent an excision procedure.  The lump was removed and biopsied and found to be Endometriosis.  She has been pain-free since it’s removal.  The authors stress that Endometriosis should always be suspected in similar situations, especially if the woman has had a C-section, regardless of the amount of time that has passed between delivery and development of the lump.

An article published in the January 2017 edition of the Journal of Midwifery & Reproductive Health is about a 37-year-old woman who had complained of a painful c-section scar for the past five years (her c-section delivery was six years ago).  Her pain and swelling of the scar increased during her period, and was a hard little the rest of the time.  She had no prior history of Endometriosis.  An ultrasound was completed, which led the physicians to suspect scar Endometriosis.  A needle-biopsy was taken of the mass, which confirmed Endometriosis, and the entire mass was removed.  The authors stress that physicians take these complaints of pain seriously, conduct an ultrasound and needle-aspiration cytology (needle biopsy) to help lead to a diagnosis and better understanding of what the mass is.  They also suggest a complete excision of the mass, plus a 1cm margin of healthy tissue around the mass…although recurrence of the scar Endometriosis is still a possibility, and follow-up examinations should be conducted.

An article published in late January 2017 followed seven women who had developed a mass along their abdominal scars, whether it by hysterectomy, hernia, or c-section.  Doctors used the method of fine needle aspiration to biopsy the masses, which pointed toward Endometriosis, and excision surgery was recommended.  If you have a mass along your scarring, talk to your doctor.  A simple biopsy may yield some answers.

A February 2017 study was about a 32-year-old woman who had a painful lump in her c-section scar (which took place 9 years ago).  The lump been around for about 8 years, was painful (moreso during her period), had slowly been getting bigger, and it had begun to turn blue around the area (this study has photographs!).  She went to the the emergency room due to the severity of the pain and the alarming blue-tint.  The lump measured 10x11cm (roughly 4×4 inches!) and was very painful when touched.  Imaging studies confirmed the presence of fluid in the surrounding tissues; they cyst had ruptured.  It was surgically removed, confirmed to be an Endometrioma, and it had not returned at the time of her six-month follow-up.

A February 2017 study discusses a 37-year-old woman who had a lump form within her c-section scar, which would occasionally hurt and leak brown fluid when she was on her period. She had a history of three prior cesarean deliveries, and the lump appeared seven months after her last delivery.  Palpating her scar revealed a lump approximately 3″ by 1.5″, which had a spot in the center which would leak thick brown good if you pressed around it (no vomiting, please).  Surgery was performed and the mass, and surrounding bits and pieces, were excised and biopsied, confirmed to be Endometriosis.  Two years after her surgery, there was no recurrence.

A March 2017 article discusses three cases of women who developed Endometriosis in their c-section scars.  1) A 26-year-old woman had two c-sections; the first three years prior and another 8 months prior.  She developed a hard, painful, swollen mass in her scar, which would bleed on the first day of her period.  It was removed, biopsied, and confirmed as Endometriosis.  2)  A 22-year-old woman had a c-section three years prior and now had a reddish, tender bump in her scar; the pain increased during her period.  Her physicians suspected scar Endometriosis, removed it, and confirmed their findings through a biopsy.  3)  A 30-year-old woman had a c-section performed a year and two months earlier.  Her scar actually secreted a discharge, and an ultrasound confirmed a cystic mass within her scar.  Her doctors thought it was an abscess, removed it, and a biopsy proved it was Endometriosis.

The Journal of Obstetrics and Gynaecology Canada published a 2017 article, with photographs, of a 36-year-old woman who developed a bump in her lower-right abdomen after a c-section.  It was just to the right of her surgical scar. It was excised and biopsied and confirmed to be Endometriosis; she had no reports of recurrence six weeks after her surgery.

If you’ve made it to the end of this blog, you have my thanks and admiration.  Please, share this if you know of someone having similar complaints.  It’s not normal.  And it certainly may not be healthy…

I learned so much today.  Thank you, MJ.  I don’t know if this answers any of your questions, but I sure hope it offers a little bit of insight…

Yours, Lisa

*Updated June 14, 2017*


BioMed Central Women’s Health (2015, Article) Endometriosis Node in Gynaecologic Scars: a Study of 17 Patients and the Diagnostic Considerations in Clinical Experience in Tertiary Care Center

Cancer Treatment Centers of America

Case Reports in Obstetrics and Gynecology (Feb. 2017, Article) Cesarean Scar Endometriosis: An Uncommon Surgical Complication on the Rise?  Case Report and Literature Review

Cureus (Dec. 2016, Article) A Case of Umbilical Endometriosis: A Villar’s Nodule

Diagnostic Cytopathology (Jan. 2017, Abstract) Fine-Needle Aspiration Cytology of Endometriosis

Endometriosis Association

Europe PubMed Central (2002, Abstract) Abdominal Wall Endometrioma After Cesarean Section: a Preventable Complication

Europe PubMed Central (2006, Abstract) Abdominal Wall Endometriosis after Cesarean Section : Report of Fifteen Cases

Europe PubMed Central (2002, Abstract) Cesarean Scar Endometriosis. A Report of Two Cases

Europe PubMed Central (1996, Abstract) Endometriosis in Abdominal Scars: a Diagnostic Pitfall

Gynecology Obstetrics & Reproductive Medicine (2012, Article) Scar Endometriosis Following Cesarean Section

Indian Journal of Obstetrics & Gynaecology (2015, Article) Cesarean Scar Endometriosis : a Rare Case Report

International Journal of Gynecology Obstetrics (2002, Abstract) Cesarean Section as a Cause of Pelvic Pain

International Journal of Reproduction, Contraception, Obstetrics, and Gynecology – (March 2017, Article) Post Cesarean Scar Endometriosis: Reporting Three Cases

International Journal of Scientific Study (May 2016, Article) Scar Endometriosis – A Cause for Painful Scar Swelling – A Surgeons Perspective


Journal of Case Reports and Studies (Feb. 2017, Article) Rupture of a Giant Caesarean Scar Endometriosis Nodule – A Case Report and Literature Review

Journal of Korean Medical Science (1999, Article) Clear Cell Carcinoma Arising in a Cesarean Section Scar Endometriosis : a Case Report

Journal of Midwifery & Reproductive Health (2017, Article) Incisional Endometriosis: A Rare Case of Painful Scar

Journal of Obstetrics and Gynaecology Canada (2017, Article) Abdominal Wall Endometriosis

Mayo Clinic

Medical Journal Armed Forces India (2016, Abstract) Scar Endometriosis: A Series of 3 Case Studies

Obstetrics & Gynecology (1980, Abstract) Scar Endometriosis : A Clinicopathologic Study of 17 Cases

ScopeMed (2016, Article) Abdominal Wall Endometriosis: A Case Report and Review of Literature

Stabroek News

The Atlantic

U.S. National Library of Medicine (1999, Abstract) Abdominal Wall Endometriosis: a Report of Eight Cases

U.S. National Library of Medicine (1999, Abstract) Clear Cell Carcinoma Arising in a Cesarean Section Scar Endometriosis : a Case Report

U.S. National Library of Medicine (2000, Abstract) Incisional Endometriosis: an Underappreciated Diagnosis in General Surgery

U.S. National Library of Medicine (2015, Article) Scar Endometriosis : Diagnosis by Fine Needle Aspiration

West African Journal of Radiology (2017, Article) Abdominal Wall Endometriosis Ten Years After Surgery

Wiley Online Library (2012, Abstract) Abdominal Wall Endometriosis in the Cesarean Section Surgical Scar : a Potential Diagnostic Pitfall

Wiley Online Library (2005, Abstract) Incisional Endometriosis after Cesarean Section, Episiotomy and Other Gynecologic Procedures

Wiley Online Library (2014, Abstract) Prevalence of Pelvic Adhesions on Ultrasound Examination in Women with a History of Cesarean Section

*Sunday is “Reader’s Choice” where my readers, friends, and family get to suggest a topic.  Today’s topic came from an my my friend, MJ, who asked, “Lisa, are you aware of any research regarding and links between endo and c sections?”  Again, I am a layman.  I do not hold any college degrees, nor mastery of knowledge.  Please take what I say with a grain of salt.  If curious, do your own research 😉 Validate my writings.  Or challenge them.  And ALWAYS feel free to consult with your physician (or in this case, attorneys). Always.  Yours ~ Lisa

Reader’s Choice : Can Men Get Endometriosis?


Last night, my boyfriend and I were talking about Endo’s “weirdness” how it can pop up in strange and unheard of places, and he popped the question (no, not THE question…), “Are there any reports of men having Endometriosis?”  I remembered reading somewhere that there were a few rare cases of it, but hadn’t read them deeply enough to understand their situations, diagnoses, and prognoses.  So, we have our topic for today!!

In rare cases, men develop Endometriosis.  It appears many have been treated with long-term or large doses of estrogen therapy, but some are healthy men who have no history of cancer or estrogen treatment.  Here’s what I could find:

A 21-year-old man complained of lower abdominal pain.  He suffered from a condition known as PMDS (Persistent Mullerian Duct Syndrome) and had been undergoing testosterone treatment since he was 18 years old.  PMDS is a rare medical condition where both male and female sexual organs are present.  An MRI of his abdomen revealed that he had a cervix and uterus with gonads (ovaries) and Fallopian tubes!  He underwent a hysterectomy, removing his uterus, gonads, and fallopian tubes.  All of the tissue was biopsied and was shown to have Endometriosis.  It is unknown how he fared after surgery, or if he received any sort of subsequent treatment.  However, there was one article that men with PMDS who have a hysterectomy and remove their ovaries may be thrown into menopause! Poor guys!

A 27-year-old man went to his physician with complaints of scrotal pain.  Unfortunately, the abstract does not describe his medical history or diagnosis, but does hint that whatever it was that was bothering him was found to have inflammation of a tube at the back of one of his testicles, which was later shown to be Endometriosis.

A 47-year-old man had undergone three prior surgeries to repair his inguinal hernia.  He went to the hospital for a fourth inguinal hernia surgery and also had complaints of infertility.  While in surgery, a mass was discovered next to his spermatic cord, which was removed and biopsied.  It was discovered to be Endometriosis.  Prior to this discovery, the patient had been taking Fertilin, an anti-estrogenic medicine to help combat his infertility and boost his sperm health and activity.  The article does not disclose any prognosis of the patient after his release from the hospital.  The article does state; however, that it was interesting that most men who develop Endometriosis have a history of estrogen therapy, but their patient had a history of ANTI-estrogen therapy…Interesting indeed.

A study published in 2014 shows a 52-year-old man went to the E.R. with complaints of “excruciating stabbing pain in the right lower abdomen and pelvis area for 3 weeks.  The pain was worse on getting up from a supine position and was not relieved by bowel movements. It slightly increased upon urination as well.”  Seven months before, he had undergone inguinal hernia repair (which had been surgically repaired a few times before) and had a medical history of cirrhosis due to Hepatitis C.  He underwent a diagnostic laparoscopy and a mass was discovered attached to his bladder and his hernia site.  It was filled with blood, was removed, and biopsied.  It was Endometriosis, complete with it’s own estrogen and progesterone receptors.  After his surgery, his pain completely resolved.

A 69-year-old man who had prostate cancer and undergone 9 years of hormonal therapy developed Endometriosis.  A lesion was found within his testicle, which had also developed cysts.  Tests of the tissue and cysts confirmed the presence of Endometriosis lesions.  They attribute that the prolonged estrogen therapy to the development of Endometriosis.

A 73-year-old man had tissue removed from his bladder, which was “histologically indistinguishable” from Endometriosis.  He had begun to suffer from hydronephrosis, which is when your kidney swells due to a build-up of urine, which had been caused by his bladder Endo lesions.  For the past five years, he had been treating his prostate cancer with Estrogen therapy.

A 74-year-old man complained of having blood in his urine.  Five years prior he had his prostrate removed due to prostate cancer and had been treated with Leuprolin (a form of Lupron) and Ethinyl Estradiol (an oral contraceptive).  Bladder cancer was suspected due to the blood in his urine and he underwent imaging studies and an exploratory surgery of his bladder.  He had a small tumor inside of his bladder, which was partially removed and biopsied.  The mass had estrogen and progesterone receptors and was determined to be Endometriosis.  Six months after he stopped taking Ethinyl Estradiol, the mass shrank.  The authors of the study suspect that it was his estrogen treatment that led to the development of Endometriosis, and also attribute it’s disappearances to the discontinuation of the oral contraceptives.

An 83-year-old man developed an endometrioma (chocolate cyst) in his abdominal wall.  He had previously received over 10 years of TACE treatment (a chemotherapy procedure to kill tumors) for prostate cancer.  This abstract hints that the endometrioma was removed, with no recurrence.  However, he continued to suffer from his prostate cancer, but died in 1979 of heart disease.  His physicians had hoped to more thoroughly examine his remains for clues as to why he developed an endometrioma, but no postmortem examination was conducted.

These are not all of the reported cases of men with Endometriosis; I’m sure I’ve missed a few.  Most of the men diagnosed with Endometriosis had the commonality of estrogen therapy.  Another two shared a history of recurrent inguinal hernia surgeries.  One young man had a functioning uterus and ovaries, which produced estrogen.

Many doctors believe that the role of estrogen may aid in the development of Endometriosis in men.  Others believe the men may have “bits of female organs” still in their bodies from their developmental stages as a fetus, although several tested did not show signs of any remnant female bits.  As usual : Endometriosis is a mystery; in women, as well as men.  However, I would think that these few, rare cases would prompt the medical and scientific community to research further any link between heightened estrogen levels and Endometriosis…

What are your thoughts? I’d love to hear them!


Avicenna Journal of Medicine : Article (2014) An Unusual Cause of Abdominal Pain in a Male Patient : Endometriosis

Daily Mail

Fertility and Sterility : Article (2008) Endometriosis in a Male with Persistent Mullerian Duct Syndrome

U.S. National Library of Medicine : Abstract (1980) Endometriosis of the Male Urinary System : a Case Report

U.S. National Library of Medicine : Abstract (1985) Endometriosis in the male

U.S. National Library of Medicine : Abstract (2006) Cystic Endometriosis of the Epididymis

U.S. National Library of Medicine : Article (2010) Endometriosis – Morphology, Clinical Presentations and Molecular Pathology

U.S. National Library of Medicine : Article (2012) An Unusual Cause of Inguinal Hernia in a Male Patient : Endometriosis

U.S. National Library of Medicine : Abstract (2012) Paratesticular Endometriosis in a Man with a Prolonged Hormonal Therapy for Prostatic Carcinoma

Wiley Online Library : Article (2012) Bladder Endometriosis Developed After Long-term Estrogen Therapy for Prostate Cancer

~ Again, I am a layman.  I do not hold any college degrees, nor mastery of knowledge.  Please take what I say with a grain of salt.  If curious, do your own research 😉 Validate my writings.  Or challenge them.  And ALWAYS feel free to consult with your physician. Always.  Yours ~ Lisa

Reader’s Choice : What’s Changed?

OLYMPUS DIGITAL CAMERAI had grown up thinking my pain was normal. And only learned after my surgery that I have a disease and it wasn’t normal.

But what does that mean for me physically? What’s changed?

Whether it be from my excision surgery and D&C, my change in diet, the 6 months of Lupron Depot injections, my new birth control pills, or a combination of them all: I won’t know. All I know is things have been very different.  Please be advised this blog may be a little bit of TMI…

  1. I no longer have killer period cramps
    1. Granted, I’ve only had two periods since my surgery before the hormone therapy stripped me of my cycles, but those two periods were the easiest periods I’ve ever experienced. The cramps were so minimal, I didn’t even know I had started.  They were like an annoying gnat, barely given a thought.  We shall see what my next cycle holds in store for me…whenever it decides to kick in.  At the time of writing this entry, I haven’t bled in nearly six months…
  2. I no longer have incredibly heavy or long periods
    1. The two periods I have had since surgery were incredibly light and only lasted 2-3 days. UNHEARD OF!  If you told me six months ago that’d be the case, I would have called you crazy and laughed in your face 🙂  Again, waiting to see what my next cycle brings…
  3. I no longer have constant lower back pain
    1. I used to have daily lower back pain.  I figured it was because I sat at my job all day, lumbar pressure and all that jazz.  I used to also continuously crack my back in the hopes of relieving that pain.  But now, it’s gone.  Hasn’t returned.  During my research, I have since learned that chronic lower back pain is a symptom of Endometriosis.
  4. I very rarely have headaches anymore
    1. I’m assuming this has more to do with a change in diet than it does with my Endometriosis.  Before, I rarely drank any water, but had tons of coffee and soda during the day.  I think the headaches were my body’s way of screaming at me to hydrate.  But I very rarely get any headaches anymore. And when I do, they’re incredibly light and go away with just a few Ibuprofen.  They’re very well-behaved.  However, there have been studies linking migraines and Endometriosis.
  5. I no longer get stabbing, shooting pains in my ribs (I used to refer to these as a “bubble in my lungs” or “lightning”)
    1. I used to get sudden, and quick, stabbing pains in my ribs or lungs.  They were so fleeting it’d only last about a second, but it was so powerful it was enough for me to intake a breath and “Ow!”  Whatever they were, I haven’t had one since my surgery.  I’d like to think it’s because the doc removed the Endo implants from my diaphragm.  And through today’s research, I’ve found that there is a link to lung/chest pain and Endo on the diaphragm.
  6. I poop at least once a day now
    1. Part of my amazing new poop schedule is due to my new diet, BUT many women with Endometriosis also suffer from chronic constipation (or diarrhea).  I’d sometimes go 3-4 days without pooping.  Suffering from the pain and bloating that came with it.  Sometimes stool softeners didn’t even help.  During my surgery, my doc found my bowel had connected to my uterus by adhesions, and also removed implants from the surface of my bowel. And since, I’m a poopin’ machine! Yay!
  7. I no longer have firey, stabbing, tearing pain when I poop
    1. Again, I thought this pain of poopin’ was considered normal.  Sometimes it was agony, even when I wasn’t constipated.  Felt like someone where stabbing me in the gut over and over again.  And I was NOT about to discuss my bowel movements with my doctor.  Why would I? Everybody poops.  I’m sure it hurts everybody when they poop; right? Wrong. This change has almost been as spectacularly amazing as the decrease in my period cramps.  A complete reversal. Oh my god.  Pooping is a joy!

A huge part of me is terrified that this relief is temporary.  But I’m trying to remain positive and think good thoughts.

Anyway, now that I’ve shouted to the heavens about my bodily functions and thoroughly grossed you out, I’m hoping that surgery (or other efforts) have drastically affected your pain as well.  I’d love to hear about it in a comment below.


Center for Endometriosis Care


Mayo Clinic


Camran Nezhat, M.D.

U.S. National Library of Medicine

U.S. National Library of Medicine – 2nd link


*Sunday is “Reader’s Choice” where my readers, friends, and family get to suggest a topic.  Today’s topic came from an my best friend, Rosie, who encouraged me to write about what’s changed physically since my surgery. What doesn’t happen anymore? What’s better?  Again, I am a layman.  I do not hold any college degrees, nor mastery of knowledge.  Please take what I say with a grain of salt.  If curious, do your own research 😉 Validate my writings.  Or challenge them.  And ALWAYS feel free to consult with your physician (or in this case, attorneys). Always.  Yours ~ Lisa

Reader’s Choice : Endometriosis as a Disability

medical leave request copyMany women with Endometriosis either cannot work or miss several days of work each month due to their pain.  Others miss work due to the side effects of their treatments or medications.  Others because of surgeries and recovery time.  It’s can be a massive economic loss, and many women are reprimanded or fired by their employers due to the lost time.

What protection do we have as Endometriosis sufferers?  What can we do? Aren’t there disability laws for stuff like this?

Important: I live in the United States.  This blog contains information regarding United States disability rules.  If you live in another country and are interested in any disability benefits you may have available, I strongly urge you to check out your local rules and regulations.

Just as important: this will be a long-winded post. Feel free to walk away…I give you fair warning!

Is Endometriosis Considered a Disability

The Federal government and each individual state may define “disability” differently.  A handy-dandy chart (which may not be current) can be found here. defines a disability as, “a physical or mental impairment that interferes or prevents normal achievement in a particular function.”

The Americans with Disabilities Act defines disability as a “physical or mental impairment that substantially limits one or more major life activities of such individual.” It goes on to define major life activities as “…caring for oneself, performing manual tasks, seeing, hearing, eating, sleeping, walking, standing, lifting, bending, speaking, breathing, learning, reading, concentrating, thinking, communicating, and working.  [A] major life activity also includes the operation of a major bodily function, including but not limited to, functions of the immune system, normal cell growth, digestive, bowel, bladder, neurological, brain, respiratory, circulatory, endocrine, and reproductive functions.”

The Disability Evaluation under Social Security is a publication also known as “The Blue Book” (due to it’s blue cover).  It itemizes disabilities recognized by the Social Security Administration and lists impairments for each major body system that are considered severe enough to prevent a person from gainful employment.  It is also an aid used by healthcare professionals to better understand disability options available to their patients.

Endometriosis is NOT identified in the Blue Book.  It is not considered “severe enough to prevent an individual from doing any gainful activity.”

So Endometriosis is not classified as a disability with the SSA.  Does that mean it’s a lost cause? No…Swallow your lumps and read on.

Social Security Disability Benefits

The Social Security Administration offers two types of disability benefits : SSDI (Social Security Disability Insurance) and SSI (Social Security Income).  SSDI is for people who have worked in the past, paying (and accruing) Social Security benefits; and receiving these Social Security benefits early (as opposed to waiting for retirement).  SSI benefits vary from state to state and pose different requirements that SSDI.

The Social Security Administration does not recognize Endometriosis as an official disability.  Their strict definition of “disability” is:

“The law defines disability as the inability to engage in any substantial gainful activity (SGA) by reason of any medically determinable physical or mental impairment(s) which can be expected to result in death or which has lasted or can be expected to last for a continuous period of not less than 12 months.”

Or more clearly (maybe):

  • “You cannot do work that you did before;
  • We decide that you cannot adjust to other work because of your medical condition(s); and
  • Your disability has lasted or is expected to last for at least one year or to result in death.”

What does that mean in English? Basically, if you believe you have a disability, you must be unable to work and earn less than the “substantial gainful activity.” For 2015, the Federal Substantial Gainful Activity amount for non-legally blind individuals is $1,090 each month.  You must also not be able to adjust to other work with your disability, and your disability has lasted, or will continue to last, for at least one year (365 days) or will cause your demise.  Think long-term.  If you’re seeking SSI benefits because you can’t work one week out of the month; you’ll likely not succeed.  If you can work with a different vocation, then you’ll likely be denied.  These are long-term disability benefits – reserved for those who are no longer able to work on a daily basis in any vocation due to their chronic pain or disability.

It does not; however, preclude you from applying.  If your Endometriosis symptoms are so great that you can no longer work at your current job, and you cannot work in another vocation, you can apply.  It’s my understanding that successfully applying for Social Security Disability benefits can be an arduous process.

You can try to prove that your Endo limits you so you cannot work a full-time job, and the Social Security Administration may find that your “functional capacity” has been so limited by your condition and finding a job that suits your needs and abilities may be impossible.

If you submit a disability application to the Social Security Administration, a Claims Examiner reviews your application, medical records, employment records, and even financial records.  The Social Security Administration will not award disability status simply because you have a disease; rather, it weighs the functional limitations presented in your paperwork and history.  Your application may be denied, and you may wish to seek an appeal.  It’s commonplace.

According to a former Disability Claims Examiner, this is because Social Security makes no attempt to obtain a statement from the treating physician, and this is usually only obtained by the claimant during an appeal process. Prior to a hearing, the claimant has no opportunity to express to their Claims Examiner the extent of their disability and symptoms. And Disability Judges can frequently overturn prior decisions.

VA Disability Benefits

The Department of Veterans Affairs offers compensation to servicemen and women who were who were injured during service, or whose pre-existing injury/conditions were aggravated while in service.  Additionally, post-service disabilities, if found related to an injury which occurred during service may be paid for.  Certain requirements must be met in order to qualify, including you must not have been dishonorably discharged from service.

How does Endometriosis fit into a military service-related injury? My guess is if you were unable to seek proper medical treatment during your service (on deployment, denial of medications, etc.) you may be able to claim that it was aggravated during that time. Or you were diagnosed with Endometriosis while still in service.

They have a Gynecological Conditions Disability Benefits Questionnaire (here) that has an entire section dedicated to Endometriosis:

VA endoSuccessfully making a disability claim with the V.A. office may be difficult.  My EndoSister, Lauren, made a claim and she has recently been victorious!  More of her story, and her V.A. Disability process may be found here.


Short-Term Disability Insurance

AFLAC is the most well-known company that provides supplemental insurance when recovering from a covered illness or medical procedure.  Some employers offer supplemental insurance coverage packages to their employees (you may want to talk to your HR Department).  You pay a monthly premium for coverage, just in case you are ever hurt or temporarily disabled and miss time from work.  You may be paid a supplemental income (a percentage of your salary) due to a “covered” sickness, time in the hospital, or physician-documented short-term disability.  It helps with the bills as they stack up, but there is usually a 10-14 day waiting period while your claim is being processed before the check(s) arrives.

Unfortunately, I have been advised that AFLAC does not cover time off due to Endometriosis symptoms, hospitalization, or surgeries. There are other companies out there…

If you do decide to go the Supplemental Insurance route, please have thorough conversations with the agent or broker:

  • Make sure that any treatment or time missed from work regarding Endometriosis would be covered by the policy.
  • Have a thorough understanding of what is, or isn’t, covered (time off work due to surgery, side effects of medication, appointments) and if there is a financial cap on what they can pay you.
  • Understand the rules of the policy regarding how many days you are required to be “out sick” before the coverage kicks in.  If you only miss 4 consecutive days of work and submit a claim, you may not be paid if their minimum requirement is that you miss at least 7 consecutive days of work.  Am I saying to miss more work than necessary? No. But you know your body, your habitual “miss work” time…it may help you in making this decision.

Do your homework. This may prove worthwhile if you can afford it.  Or it may not…

Assistance in Finding a Different Job with your Endo

If someone has a disability that interferes with their ability to work, or to work in a certain type of job, the State Vocational Rehabilitation Agency is there to help.  Each state has its own departmental offices, but the Agency is intended to “coordinate and provides counseling, evaluation, and job placement services for people with disabilities.”  Each state will define “disabilities” differently, as well as offer different services and access to local programs.

Endometriosis may not constitute a disability in their eyes; they may, or may not, be able to assist you.  To find an office in your state, click here.

Disability and Employment Laws

What if you only need to find a way to protect yourself for those few days you miss from work each month? Or are recovering from surgery and don’t have anymore vacation time?  What if you’re scared of being fired because of your condition?

In 1990, the Americans with Disability Act (the ADA) was passed in order to prohibit discrimination against and ensure equal opportunities for people with disabilities.  However, due to their definition of disability, you cannot rely on an ADA  lawsuit protecting you from missing work.

In 2003, Shannon Kampmier was fired after failing to provide a doctor’s note of her absence after a recent surgery (and pending hysterectomy).  She filed an ADA suit, which was lost and later appealed.  Ultimately, the court found that “she did not have her claim under the ADA because she did not make an individualized showing of a disability. The court found that even though her conditions could impair major life functions, she lived an active life, cared for herself and her family, and could perform the tasks central to most persons’ lives.” (Update on Disability Discrimination: Emerging Issues Affecting the Public & Private Sector, by Sheryl J. Willert and Jessie L. Harris)

The Family Medical Leave Act was passed in 1993 to provide employees job protection and unpaid leave for certain family or medical reasons, without facing retaliation from the employer.  This includes “a serious health condition that makes the employee unable to perform the essential functions of his or her job.”  However, not all business are required to follow FMLA Rules.  If you work at a business with less than 50 employees, you are not protected by the FMLA regulations.  If you work at a business that employs at least 50 employees, you then have to meet additional requirements (work so many hours, been employed for at least a year, etc.).  If you plan on seeking leave under the FMLA, I strongly suggest you familiarize yourself with the Frequently Asked Questions on their site, here, or even consult with an employment law attorney.

In 2002, the case of Trivisonno v. Metropolitan Life Ins. Co. was brought before the Federal court.  The plaintiff, who suffered from Endometriosis alleged she was fired in violation of the Family Medical Leave Act.  The court found; however, that she was only terminated after she “stopped showing up for work and had abandoned trying to meet her production requirements.”  Upon her return to work, she was unable to meet her sales quota and stopped showing up to work, in violation of the employers’ policies.  Unfortunately, I cannot locate enough facts to understand the basis for her FMLA claim, but do know that she did not win her case against her employer.

A 2016 case, Cheryl Perkins appealed the denial of her disability claim; however, she did not win.  They found that she was still able to be gainfully employed and did not suffer from impairments of normal living.  You can read the decision here.

But don’t be discouraged! Another 2016 case, Lyndy Slaughter, was also denied disability benefits.  She fought the decision, and the court ultimately approved her claim for benefits!  You can read the decision here.

If you think you are, or have been, discriminated against by your employer regarding your Endometriosis, you may wish to seek out legal counsel.  Most consultations are free.  Do not lose heart in the above-mentioned rulings of these lawsuits.  Every case is different, much like every woman’s Endometriosis is different.

What YOU Can Do

If you’re missing some time off of work and want to take steps that may help you stay employed:

  • You may wish to talk to an attorney who specializes in employment law and disability issues.
  • See if your physician can write a letter regarding your condition, symptoms, treatment, and side effects to keep in your employer’s personnel file.
  • Review the ADA and FMLA regulations to see if your employer is held liable to these standards.

If you desire to file for long-term disability benefits:

  • You may wish to talk to an attorney who specializes in disability claims and appeals.
  • You can file online or in person at your local Social Security Administration office.
  • Your physician may be asked by the Social Security Administration to provide written reports or opinions regarding your condition.  It is important that your physician understand the full extent of your symptoms and any limitations they present.

If you want to help push toward Endometriosis being classified as a disability:

  • SHR billWrite your senators and your congressmen and women.  In 2002, the House passed the National Endometriosis Awareness Resolution. It was created to raise public awareness in the medical and layperson communities; and also recognize the need for better patient support and better physician understanding of the disease.
  • Can’t find a petition? Create one! Spread the word! Gather the signatures! You can do so here. With approximately 5 million women in the United States suffering from Endometriosis, there shouldn’t be a problem amassing the required signatures. Unfortunately, all previous online petitions have failed to reach the minimum number of signatures…

You know your body. You know what you are, and are not, able to do anymore.  I know this blog has made it sound like one hell of an uphill battle.  Do not let these words discourage you if you wish to make a disability claim. Forge ahead. Remain strong and diligent.

And as always…do what is right for you.



American Medical Association Journal of Ethics

Americans with Disabilities Act

Center for Endometriosis Care

Center for Endometriosis Care – second link

Disability Secrets


Helmes & Green, LLCTrivisonno v. Metro. Life Ins. Co.


Library of Congress

Open Jurist – Kampmier v. Emeritus Corporation

School House Rock

Social Security Administration

Social Security Administration – Blue Book

Social Security Disability and SSI Resource Center

Social Security Disability Help

The White House

U.S. Department of Education

U.S. Department of Labor

U.S. Department of Veterans Affairs

*Sunday is “Reader’s Choice” where my readers, friends, and family get to suggest a topic.  Today’s topic came from an EndoSister and fellow blogger, Kitten, who wanted to know if Endo as a disease is protected under disability laws, so that you can’t be fired for missing work due to complications like pain, treatment side effects, or surgery.. So let the research began!  You can read Kitten’s blog here. Again, I am a layman.  I do not hold any college degrees, nor mastery of knowledge.  Please take what I say with a grain of salt.  If curious, do your own research 😉 Validate my writings.  Or challenge them.  And ALWAYS feel free to consult with your physician (or in this case, attorneys). Always.  Yours ~ Lisa