Reader’s Choice: Small Endo, But Big Pain?

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One of our readers, Jocelyn, emailed me this question:

Hi Lisa,

Thanks for doing this! I was diagnosed with Endo in May 2017. After of course many ultrasounds, bladder scans, colonoscopies… you name it. The laparoscopy in May only revealed 2 very tiny cysts on my ovaries. My doc was able to get a tiny sample sent it off and then after much debate, they gave me the Endo diagnosis. My pain was very severe. I could barely complete normal activities without taking either 800 mg of ibuprofen every 2-4 hours, tramadol, rest, etc. With that being said, my question is even if the Endo is so small can it still cause a great deal of pain? I’ve heard women who have Endo all over their bodies. I tend to question myself because the cysts were so small. I apologize for the ridiculously long response. It’s just been very heavy on my mind. Thanks for listening and all that you do!

Best,
Jocelyn

~

Hi Jocelyn!

Thank you so much for responding!  I’m glad you received a diagnosis; helps to know that the pain isn’t normal!  AND your response was not ridiculously long at all.  So there! ūüėõ

To answer your question about heightened pain levels, even though your Endo is “so small”…it doesn’t matter the amount of Endo you have.  Pain is pain is pain.  And this disease can cause havoc!  I did a bit of research about this topic after my 2014 diagnosis and women with Stage 1 Endo (which sounds like what you may have) can have extreme pain…while some women with Stage 4 Endo (which is as bad as it gets) have little to NO symptoms or pain.  Isn’t that bizarre?  Some women with Stage 1 Endo have NO pain while some do…the amount of the disease found in your body DOES NOT dictate the level of pain.  The presence and ferocity of the pain of the disease is different for every person, regardless of their “Stage” level.  Do not let your “small cysts” devalue your pain or belittle your illness or suffering.  Never let anyone tell you otherwise.  If you’d like to read more about my research from back then, please check out https://bloominuterus.com/2014/11/19/endoinvasion-stages/.

**

If you have an Endo-related question you’d like me to delve into, shoot me a note here.

Permission was granted by Jocelyn to use her name and publish this Q&A.  Hoping this Q&A session helps answer some questions that other EndoSisters or their support systems may have.

Reader’s Choice: Pudendal Nerve Pain

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One of our readers (who shall remain anonymous) asked if we could look into a topic: “Pudendal nerve pain-when is it endo and when is it not? Or is there even a way to know?” ¬†So, here I go off to learn things and hopefully share a bit of that newfound knowledge. ¬†And since this blog entry is Endometriosis-related, I’m going to keep the anatomy female (although men have a pudendal nerve and can also suffer from these symptoms).

Where’s the Pudendal Nerve?

The pudendal nerve is located back by the tailbone, and extends along the pelvic floor and around the pelvis, toward the rectal, gluteal, and clitoris areas. ¬†There’s two: a right and a left pudendal nerve. ¬†One or both pudendal nerves may cause issues, which we’ll get into right now!

Symptoms of Pudendal Nerve Pain or Issues

I’ve run into two types of pudendal nerve pain: pudendal neuropathy/neuralgia and pudendal nerve entrapment. ¬†Depending on what is causing the pudendal nerve pain or issues, symptoms may include:

  • Anal incontinence
  • A sense of full bladder or bowel
  • Bladder incontinence
  • Chronic constipation
  • Groin pain (vulva, labia, clitoris, and/or perineum)
  • Pain during or after a bowel movement
  • Pain during or after sex
  • Pain in or around buttocks, legs, and feet
  • Pain while sitting
  • Rectal/anus pain
  • Sexual dysfunction
  • Urethra pain

The pain may feel like any or all of the following: aching, burning, like you’re being jabbed with a hot poker, increased sensitivity, numbness, stabbing/lightning pain, and twisting/pinching. ¬†The skin in the areas of the genitals or anus can be incredibly hypersensitive, too.

These symptoms may start out small and unnoticeable (or even as a pins and needles sensation, like when your foot falls asleep), but may develop over time into a chronic condition. ¬†Unfortunately, sometimes it’s only when the symptoms are unbearable that people seek the advice of their healthcare providers.

Causes of Pudendal Nerve Issues

There are a lot of theories about what may cause pudendal neuropathy, including inflammation or autoimmune illnesses. ¬†(Sound familiar…?) ¬†Tension on the nerve or nerve entrapment may also cause the nerve pain or other symptoms. ¬†Surgeries, prolonged sitting (compressing the nerve), trauma or injury, and even childbirth may also be a cause. ¬†Another theory is simply that you’re predisposed to pudendal neuropathy. Often times, pudendal neuralgia may be misdiagnosed as pelvic floor dysfunction because they are so similar, or even go hand-in-hand with one another.

And *ding ding ding*, according to the Health Organization for Prudendal Education, “women with severe endometriosis may develop scarring or inflammation if the endometriosis settles on the nerve.” ¬†(We’ll get to more on that later…)

I have Pain; Now What?

Awww, testing! Let it all begin! ¬†Likely, a detailed history of symptoms will be discussed, as well as any family and personal medical history. ¬†Some physicians may conduct a physical examination as well. ¬†And, there’s these (in no special order):

  1. Pudendal Block Test: the pudendal nerve is injected with an anesthetic, analgesic, or a steroid either transvaginally or through the perineum tissue. ¬†If the symptoms disappear, it may indicate that there’s nerve entrapment or that your pudendal nerve is a likely source of your agony. ¬†Medscape.com offers a horrific image of what a transvaginal pudendal nerve block injection looks like…(I’m cringing) – you can view it here.
  2. Pudendal Motor Latency Test: may determine nerve damage by measuring the nerve’s motor function.
  3. Pudendal Nerve MRI: an MRI of the nerve may be able to find anatomical anomalies with the nerve.
  4. Ultrasound of the pelvic floor muscles: may help reveal any issues with the pelvic floor muscles.
  5. Ultrasound of the sacroiliac joints: may reveal trauma to the tailbone and rule out other causes of pain.
  6. Lifestyle changes in diet and exercise may help alleviate symptoms.  Yoga may help ease pelvic tension, too.
  7. Pelvic floor therapy may also help lessen tension in the nerves and loosen up things, which may make you feel better.
  8. Some people receive relief with a TENS unit.
  9. Acupuncture may offer some relief from pudendal nerve pain.
  10. And if all else fails: everyone’s favorite…surgery – pudendal nerve decompression surgery.

But…what about Endometriosis and the pudendal nerve? ¬†Now that we know what the pudendal nerve does and what symptoms of pudendal nerve issues may feel like, as well as other causes of the pain, let’s look deeper into Endo and the pudendal nerve.

Endometriosis and the Pudendal Nerve

Let me start this off by saying: If you have these symptoms, you may have:

  1. Pudendal neuropathy/neuralgia or pudendal nerve entrapment…
  2. Endometriosis on, or nearby, your pudendal nerve…
  3. Something completely unrelated…(Read this study regarding seven different cases of people having pelvic nerve pain and the different surgical outcomes and causes)

What?!? ¬†The one thing I want you go get out of reading all of this is: TALK TO YOUR PHYSICIAN. ¬†Push for the healthcare you deserve. ¬†Ask questions. ¬†Get second, third, or fourth opinions. Push, push, push. ¬†Do not feel brushed-off. ¬†It may, or may not be, endometriosis-related. ¬†But you have to start asking questions first! ¬†And, unfortunately, the only way to truly know if Endometriosis is affecting your pudendal nerve is, you guessed it: exploratory surgery by someone who knows what they’re looking for…and knows how best to handle it.

If the pudendal nerve is affected by Endometriosis, any or all of the above-symptoms can occur. ¬† Unfortunately, it is often misdiagnosed as pelvic floor disorders, musculoskeletal disorders, or interstitial cystitis. ¬†AND add to that the fact that you (may) already have an Endometriosis diagnosis – and these “new” symptoms are just getting brushed off as part of your already-diagnosed Endometriosis. According to several doctor’s webpages, the treatment of Endometriosis on nerves cannot be conducted like a regular excision surgery (scoop and remove). ¬†Extreme skill and care must be practice since the surgeries are so complex and the nerves are so teeny-tiny.

In a 2010 letter to the editor, physicians presented a case study of a 32-year-old woman who complained of pelvic pain, constipation, painful periods, and pain around her anus and genitals, which extended down her right leg. ¬†Pain medications weren’t helping. ¬†So, after undergoing some tests and imaging studies found they that she had a nodule along her recto-vaginal septum, as well as suffered from hypersensitivity in some pelvic areas, and a decreased sensitivity in others. ¬†It was suspected that whatever was going on involved her right pudendal nerve. ¬†Investigative laparoscopic surgery was performed and they discovered Endometriosis had infiltrated her Pouch of Douglas, the right side of her parametrium (tissue between cervix and bladder), as well as other areas inside her pelvis, and her recto-sigmoid colon. ¬†Of interest, “[t]he disease reached and¬†compressed the parietal fascia covering the right sacral plexus and¬†sacral roots at the level of S1‚ÄďS3 and the right pudendal nerve and¬†vessels at the entrance into Alcock‚Äôs canal.” ¬†Yep…pudendal nerve and vessels…The “disease” had compressed her nerves. ¬†They excised the Endometriosis that they could, resected some of her bowel, and restored her bits and pieces. ¬†Surgery was 3.5 hours and she endured a seven-day hospital stay. ¬†She was given six months of GnRH-analogue therapy, followed by a continuous birth control pill. ¬†Even a year later, she was “very satisfied” with her quality of life. ¬†The authors stated:

“Endometriosis of somatic nerves, and particularly of the¬†pudendal nerve, is a rare condition that may impair visceral and¬†motor functions and is associated with severe drug-resistant pain.” ¬†(I, of course, added the bold font for a bit of emphasis.)

A 2010 study (which mirrors much of the language of the aforementioned letter to the editor, leading me to believe they later published an actual study) also discusses Endometriosis involving the somatic nerves, including the pudendal nerve.  It discusses how the nerves may actually be infiltrated with Endometriosis, or simply compressed by the presence of the disease and/or inflammation, how those lesions can be removed (often sparing the nerves and vessels), and how such excision of the disease may lead to symptom relief.

In 2011, a Swiss study was published about 213 patients seen between 2004 and 2010 for treatment of sciatica or pudendal/gluteal pain.  All of them had no known reason for the pain and all had spinal cord issues previously ruled out.  Anyone who had sacral plexus damage due to injury was excluded from the study.  Data was taken about motor skill dysfunctions (hips, knees, legs) due to the symptoms, as well as bowel and bladder issues.  Each patient underwent a laparoscopy, and the following may be interesting for you to read:

  • 27 patients had an isolated endometrial cyst of the sciatic nerve with no other indications of Endometriosis anywhere;
  • 148 patients had deep-infiltrating Endometriosis which affected their sacral plexus with inflammation, which included the S2-S4 sacral nerve roots (also where the pudendal nerve sprouts from); and,
  • 37 patients had nerve entrapment due to Endometriosis of the sacral plexus

I didn’t find a lot of studies relating directly to the pudendal nerve and Endometriosis…

Wrapping it All Up

Well, today I learned a lot about the pudendal nerve and the pain associated with pudendal neuralgia and pudendal nerve entrapment. ¬†It can be one hell of a painful mess! ¬†And…it can be caused by many different things. ¬†But how do YOU know if the pain that you’re feeling is Endometriosis symptoms, Endometriosis influencing your nerves, pudendal neuralgia, pudendal nerve entrapment, or something completely different?

Simple…well, not so simple. ¬†But Step One is simple: ¬†pick up the phone.

Track your symptoms and pain. ¬†Make a doctor’s appointment. ¬†Have full, lengthy conversations. ¬†It may be a long road before you’re able to figure out answers, but there are steps to rule out concerns…and steps to confirm suspicions.

And remain calm. ‚̧

If you’ve had procedures regarding pudendal nerve neuropathy/neuralgia or entrapment, and want to share your experiences, please let us know! ¬†And was any of it related to your Endometriosis?

Resources:

Current Bladder Dysfunction Reports – (2012, Article) Voiding Dysfunction Associated with Pudendal Nerve Entrapment

Endometriosis Australia

European Journal of Obstetrics & Gynecology and Reproductive Biology – (2010, Letter to Editor)

Fertility & Sterility – (2011, Article) Laparoscopic Therapy for Endometriosis and Vascular Entrapment of Sacral Plexus

Healthline.com

Health Organization for Pudendal EducationPudendal Neuralgia Symptoms

Hirslanden Private Hospital Group – Refractory Endometriosis

Medscape.com

Merriam-Webster.com

Nezhat.orgNerve Damage Caused by Endometriosis

OB/GYN.net Taking the Shame Out of Pudendal Neuralgia

Radiopaedia.com

Surgical and Radiologic Anatomy – (2010, Article) Laparoscopic Nerve-Sparing Transperitoneal Approach for Endometriosis Infiltrating the Pelvic Wall and Somatic Nerves: Anatomical Considerations and Surgical Technique

Vital Health Endometriosis Center

Women’s Health and Research Institute of AustraliaPudendal Neuralgia

~ 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¬†ūüėȬ†Validate my writings. ¬†Or challenge them. ¬†And ALWAYS feel free to consult with your physician. Always. ¬†Yours ~ Lisa

Reader’s Choice : Oophorectomy & Endometriosis

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Plushy ovary available on iheartguts.com

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.

Cancer

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.

Torsion

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.

Abscess

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.

Hysterectomy

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.

Endometriosis

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.


Resources:

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

Lifescript

Mayo Clinic

Modern Medicine Network – (July 1, 2011; Article) Bilateral Oophorectomy: Solving the Risk/Benefit Equation – Choosing Candidates, Monitoring Outcomes

OBGYN.net – (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 Р(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

WiseGeek

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 ūüėČ 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.  HelpGuide.com 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 Drugs.com. ¬†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 Рmay cause loss of seizure control, tremors, poor muscle coordination, increased seizures, and changes in behavior.

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

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

Yasmin (birth control pill) & Klonopin Рmay 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…

 

 

 

Resources:

Bipolar Reddit РBipolar & 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?

Drugs.com РDrug Interaction Search

Examiner.com – (Dec. 2015, Article) Endometriosis Associated with Psychiatric Disorders, Say Researchers

HelpGuide.com –¬†Bipolar Medicaiton Guide : Medications and Drugs for Bipolar Disorder Treatment

Journal of Obstetrics and Gynaecology Canada Р(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 Р(Oct. 2013, Article) Hormone Imbalance, Not Bipolar Disorder

The American Journal of Psychiatry Р(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 ūüėČ 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

 

searching.jpg

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

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‚Äôm 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:

AAGL.org. ¬†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.

Angryuterus.com. 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.com. ¬†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…

Google.com¬†(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.

Lifescript.com. 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.

Myendometriosisteam.com. 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…).

Yelp.com. 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.? Endometriosis.org 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.

Resources:

AAGL.org

Angryuterus.com

DocSpot

Endometriosis Association

Endometriosis.org РFinding an Endometriosis Specialist

Endometriosis.org – How to find a specialist

Endopaedia¬†–¬†Facebook page

Endopaedia map

EndoVictims

Google

Lifescript

Myendometriosisteam.com

Nezhat.org

Yelp

 

~ 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 ūüėČ Validate my writings. ¬†Or challenge them. ¬†And ALWAYS feel free to consult with your physician. Always. ¬†Yours ~ Lisa

 

 

 

Frozen Embryo Transfers & Endometriosis

FET

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 ūüôā

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

Resources:

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

Advanced Fertility Center of Chicago РIVF & 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 Рblog 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

IVF.ca¬†– “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

OBGyn.net – (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 Рstats 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 ūüėČ Validate my writings. ¬†Or challenge them. ¬†And ALWAYS feel free to consult with your physician. Always. ¬†Yours ~ Lisa

Reader’s Choice : Letrozole & Endometriosis

Image-1
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, michiko.maruyama@gmail.com, www.artoflearning.ca
Used with permission: Michiko Maruyama, michiko.maruyama@gmail.com, http://www.artoflearning.ca

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.

RXList.com 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.

Conclusion

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.

Resources:

Advanced Fertility Center of Chicago

Endometriosis.org

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

Merriam-Webster

Northwestern University Feinberg School of Medicine

RXList

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

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

*Sunday is ‚ÄúReader‚Äôs Choice‚ÄĚ where my readers, friends, and family get to suggest a topic.¬† Today‚Äôs topic came from an my my friend, JeriLynn,¬†who asked, ‚ÄúDo you happen to have anything about the new medication I’m on??‚Ä̬† 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 ūüėČ 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.

IMPORTANT

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…

Studies

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.

cscar

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 Рand 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*

Resources:

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 ‚ÄúReader‚Äôs Choice‚ÄĚ where my readers, friends, and family get to suggest a topic.¬† Today‚Äôs 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 ūüėČ 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?

male

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.

In 1979, a 50-year-old man was found to have Endometriosis in his bladder. ¬†In 1955, he had his prostate removed due to the presence of an adenocarcinoma. ¬†Over the next five years, all of his annual rectal exams were normal. ¬†Eleven years later, he suffered from a ruptured appendix and bowel blockage, requiring surgery. ¬†Three months later, he was readmitted to the hospital with complaints of rectal bleeding and diarrhea. ¬†It was discovered that he had a hard nodule in his rectum. Biopsy found it similar to the adenocarcinoma that was previously excised from his prostate, so both of his testes were removed. ¬†He was prescribed 12 mg of Tace (estrogen therapy) to be taken daily. ¬†In 1972 (four years later), he complained of blood in his urine. ¬†A cystoscopy revealed a nodule inside his bladder. ¬†A portion was removed for biopsy: it appeared identical to endometrium, but a diagnosis of Endometriosis was not given. ¬†Instead, his Tace dosage was doubled to 24mg per day. ¬†Nearly a year later, he was hospitalized due to blood in his urine. ¬†Imaging studies showed a build-up of fluid in his left kidney due to a bladder obstruction. ¬†A cystoscopy was performed and a large lesion was blocking his ureter opening. ¬†Biopsy confirmed the presence of Endometriosis on and within his bladder wall. ¬†At that time, is prior specimens were re-biopsied and confirmed as Endometriosios. ¬†That portion of his bladder was resected. ¬†He was taken off of Tace and prescribed a regimen of birth control pills. ¬†He continued to have intermittent blood in his urine and four months after starting birth control had a “hemorrhagic episode,” the birth control was discontinued, and he underwent a further resection of the newly-bleeding bladder. ¬†His symptoms disappeared.

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.

Back in 1971, an 80-year-old man was found to have Endometriosis on his bladder, but only after several procedures to confirm this. ¬†He was previously medically castrated in 1958 due to blood in his urine and a suspected case of prostatism. ¬†At that time, it was discovered that he had a blockage in the bladder neck. ¬†The blockage was removed, later confirmed as a adenocarcinoma (a tumor). ¬†After the procedure, he was prescribed estrogen, 12mg to be taken daily. ¬†Four months later, he went in for surgery to have his prostate gland removed. ¬†Biopsy showed abnormal cell growth on the prostate, as well as a carcinoma, which was removed. ¬†He continued to take the 12mg of Tace daily…with no recurrence of the carcinoma during annual examinations. ¬†In 1968, he was once more seen by physicians due to blood in his urine. ¬†Testing failed to reveal a cause. ¬†Nearly a year later, the blood in the urine returned. ¬†This time, it was so “profuse” that it required several transfusions before physicians could perform a cystoscopy to look up into the bladder. ¬†Once inside, they found a 1cm “dark-brown lesion) on the right side of his bladder. ¬†The pathology suggested Endometriosis and the physicians thought maybe there had been a mix-up in the lab and some uterine tissue was mixed in with the sample. ¬† Two months later, (yep…you guessed it) there was more blood in his urine. ¬†The biopsy for this third cystoscopy came back as a bladder infection. ¬†He continued to have regular blood in his urine after that procedure. ¬†In April 1970 (six months the “bladder infection” diagnosis), he underwent yet another cystoscopy, wherein another dark lesion (in the same spot) was located and biopsied. ¬†Once more, it was strongly suggested to be Endometriosis. ¬†A week later, a resection of his bladder was performed. ¬†A “firm, golf-ball size, growth-like structure” was found within his bladder and in the bladder wall.. ¬†Upon examination of the growth, it ruptured – spilling “old blood” ¬†(sound familiar?). ¬†They dug around in his pelvic cavity searching for any signs of female organs: ¬†100% male insides. The patient did well after the procedure. ¬†This may very well be the first written account of Endometriosis in a male patient.

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!

*Updated July 18, 2017*

Resources:

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

Cancer : Article (1979) Endometriosis of the Urinary Bladder in a Man with Prostatic Carcinoma

Daily Mail

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

The Journal of Urology : Article (1971) Endometriosis of the Bladder in a Male Patient

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 РMorphology, Clinical Presentations and Molecular Pathology

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

Pathology – Research and Practice 208 : Article (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 ūüėČ Validate my writings. ¬†Or challenge them. ¬†And ALWAYS feel free to consult with your physician. Always. ¬†Yours ~ Lisa