Shoulders for Sisters : Suicide Prevention

11039139_662825227181071_4369078669983645988_nSuicide and Endometriosis has been a topic heavy on my heart for the past seven months (you can read Suicide & Endometriosis here).  Am I suicidal? No.  However,last year there were several EndoSisters who committed suicide.  And this year a few more have.  Too many.  But can easily understand their hopelessness: pain; no cure; the potential for multiple surgeries; regrowth; Western medicine, alternative medicine, natural supplements, snake oils, relief, recurrence, and the cycle starts all over again.  Not to mention a sense of being completely alone, misunderstood, misdiagnosed, mistreated by physicians, mislabeled as drug-seekers, fakers, and crazies.

I’ve been trying to think of ways that I can help. In a small way.  Or a big way.  And I’ve fallen short on ideas… But today I’ve learned of a group where Sisters with suicidal thoughts can go for help.  An old-fashioned phone-line group.  Yes, that’s right.  You can email, PM, or call someone if you need to talk.  Talk with someone who is in your shoes.  Who knows what you’re going through…because they’re going through it, too.  Understand that you are not alone, and understand that people want to listen. And help.

Shoulders for Sisters was created in June 2015 by two EndoSisters, Amanda and Brandi, after hearing about three confirmed suicides of EndoSisters within one week.  THREE…IN ONE WEEK.  A fourth Sister also passed away that week, but the details of her death are unknown.  Amanda and Brandi, like many of us, felt like something needed to be done.  So they created Shoulders for Sisters, a Facebook group where EndoSisters in need of help can turn to.  It is currently run by four Admins and is a closed group on Facebook, and will remain closed for the comfort and security of it’s members.  If you would like to join, either because you need someone to talk to, or you would like to help, please click here.

I had a few questions for the founders of the group, and was given permission to share them here with you:

Question:  Do you have Endometriosis?  If so, could you tell us a little bit about your experience, diagnosis, struggles, and victories? It may help us connect with you.

Amanda: I have had symptoms of endometriosis since my first period in August 2000. My mother didn’t believe in doctors and my ex husband didn’t like paying for them. I was finally diagnosed in September 2012. I had stage one. Two years and many doctors later, I had another lap with the best excision specialist in Minnesota, Dr. Eric Heegaard. I had stage four. He found endo and adhesions everywhere. It was nice to know that, despite what I had been told for years, it wasn’t “just cramps”, I wasn’t a “drug seeker”. It didn’t matter that I didn’t ” look sick” so “it couldn’t be that bad”. I had a diagnosis and treatment plan. Every treatment so far has failed miserably to control the pain. But, as much as I want to at times, I cannot give up. We have to be the voices for our fallen Sisters.

Brandi: Yes. I was young when I started my period. Probably around ten or so. My periods were heavy and so painful that they kept me from school many, many times. I was told this was just “bad cramps” and that it was completely “normal”. Pretty much that periods are supposed to be painful. That it is part of our burden as women.

At the age of 17 I was diagnosed with polycystic ovary syndrome (PCOS), and given a new drospirenone-containing birth control pill. They said it would help with the periods being so painful and heavy. It only made me very ill. (Morning sickness like ill, so I stopped taking it and went back on one of the other popular pills at the time.)

Two years and three OB-GYNs later, I am having even worse periods, the pain is worse than ever. I can hardly get out of bed at times. It was absolutely horrible.

After trying several different hormonal treatments and unsuccessful pain management, I ended up on a drug called Lupron.  I could write you a novel on this horrible chemotherapy drug. They gave it to me just assuming I had endometriosis. When endo can only be confirmed through surgery. The side effects were horrible. I would get a monthly shot of this poison and then be sick for 3 weeks. Once I’d start feeling better, it was time for another dose. I had a total of 13 months of it, not realizing that you’re not supposed to have more than 6 months of it in a LIFETIME. You read that right. LIFETIME. It did
nothing to help my pain. In fact, it did more damage to me than I believe the endo has.

One year, and two suicide attempts later, I met the doctor who would save my life. I will keep him anonymous at this time, but he did my first laparoscopy and lo and behold, there was endometriosis. It was only stage 1, and there wasn’t much, but there it was. Growing inside me almost like a cancer. He also placed the Mirena IUD in during that procedure.

(Mind you, he is a local doctor. Where I’m from, there aren’t a lot of great doctors. I went to Wheeling Hospital and didn’t even get to see a physician but a physician’s assistant. I went to UPMC Magee Women’s Hospital and was told by the doctor that if something were to go wrong during my surgery, it could “Ruin his reputation.”) All of that before I met my current doctor.

For the first six-eight months I had almost no pain at all. I thought it was a miracle. My periods stopped completely.
Four years and one oophorectomy later, I am suffering terribly again.

I am scheduled for another laparoscopy on July 6, 2015, to have any and all adhesions removed, the Mirena IUD removed, any endometriosis excised and hopefully only the cyst on my remaining ovary removed. I desperately want to keep this ovary. I’m only 30, I don’t have kids and I can’t afford to have eggs frozen. I also consider myself too young for HRT. They told me that if I end up having this ovary removed, I will be on HRT for at least 15 years. Which makes endo grow more, among other problems.

It’s very frustrating. We all say we need a cure. I think that firstly, we need an effective treatment; Not just pain medications.

Question:  Please explain a little bit about the group and what you wish to accomplish.

Amanda: We just want to be supportive, that good friend that can be called anytime, day or night, and help you get through this. A lot of Sisters don’t have support. We want to provide that.

Brandi: The group was a response to recent endo-related suicides. Girls who felt they had no other choice but to take their own lives. It’s horrible to think of. It also needs to stop. If we can be there for each other, we should be. We’re all in this together even though our cases are all different.

Personally, I would like the group to be for those sisters who are depressed, having anxiety, and suicidal thoughts and feelings. I know what that feels like. It’s a lonely hopelessness. A feeling that even those on the Suicide Hotline don’t understand because they don’t get the physical pain component like we sisters do. Basically, the aim is to be supportive to one another and be there for each other in times of need and crisis.

Question:  Are any of your admins trained in suicide prevention?  If some (or all) are not, will you be encouraging taking classes?

Amanda: I am not, but I have studied the subject on my own. I think experience with the same issues can help more than any class.

Brandi: I’m not. I would definitely be interested though. I’ve gone through this personally and ended up in a psych unit. So I know the feeling really well. I still have bad days to. We Admins aren’t immune to that and I’m pretty sure we know it.  I would absolutely be open to taking classes. Even if they’re online.

Question:  Do only Admins take the phone calls, or can any interested members?  If any member can, please explain the process of how we can go about joining your “phone tree.”

Amanda:  As of right now, we admins are taking the calls, but we intend to set up a “Buddy System” of sorts, where each person would check in daily with their Buddy, and refer them to us if they can’t handle it. We also require everyone to provide their address and phone numbers, privately, to the admins, in case a Wellness Check needs to be done.

Brandi: As of right now, any member who has posted their info on the pinned post will be able to take calls and messages. We’re planning to implement some sort of buddy system in the near future.

Question: Is there any other way that we can help?

Amanda:  Raise awareness. This disease itself isn’t deadly, but the lack of understanding and support is. After hearing for so long, even from medical professionals, that you’re crazy, or just want drugs, you begin to doubt yourself. You are not weak, you are not a burden. You are strong and you are loved!

Brandi: Awareness of our group and for sisters not to be afraid to admit when they need help.

**

I want to thank everyone involved with the creation and ongoing support of Shoulder for Sisters for their efforts, time, heartache, and empathy.  There have been far to many deaths due to Endometriosis.  And something had to be done.  This is a small step toward a greater future for EndoSisters. Just knowing that there is someone out there who cares, someone out there who understands, and someone out there to hold your hand…that can truly make the difference between life and death.

You are not alone.  We are not alone.  And I am so grateful for the broad and supportive community of EndoSisters.  And for this group striving to save lives and hearts.

Please feel free to share their Facebook group, or this blog.  Knowing this service exists is the first step toward getting help.  Knowing where to turn.  And if we don’t share the link, how will EndoSisters know it’s here? Share, share, share.  Please.

Yours,

Lisa

Feel Good Friday

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We made it to another Friday!  And you know what that means:

Today’s quote is by American actress, Audrey Hepburn:

“Nothing is impossible.  The word itself says, ‘I’m possible!'”

It’s hard to remember this principle when things are down in the dumps, the task is too great, or life is just so overwhelming.  But try.  Try to remember that you can get through it.  Whatever “it” may be.

And if you need help, we can do it together.

Have a wonderful weekend!

Yours,

Lisa

Truth, Theory, or Tall Tale

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Women with a higher stage of Endometriosis are in more pain than those with a lower stage.

TallTale

There are four regularly accepted stages of Endometriosis: 1 through 4 (I – IV).  I was diagnosed with Stage IV Endometriosis, but does that mean my pain was far greater than someone with Stage I?

No.

The Stage level merely identifies the intensity of presence and damage by Endometriosis and adhesions.  And oddly enough, someone with Stage I, with very little Endo present, may have far greater pain that someone with Stage IV.  And someone with Stage IV may not have any symptoms and be stunned to learn they have Endometriosis.

Does that mean someone with Stage IV doesn’t have pain? No.  This disease is individualized for every woman.  There is no “standard” way to diagnose a woman’s pain level purely based on the stage of her disease.  Any woman with Stage I, II, III, or IV may have no pain or may be in excruciating, debilitating pain.

More information on Stages of Endometriosis can be found here and here.

Feel Good Friday!

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It’s Friiiiiiiiiiiiiiiiiiiiday!

Today’s “Feel good” quote is by American actor, Danny Kaye:

“Life is a great big canvas, and you should throw all the paint on it you can.”

Here’s to hoping we can all get out there, spread a li’l bit of paint, adventure, and laughter, and make a great big smooshy, happy mess.

Live well, guys.  We’ve only got one.  Go out. Enjoy. Find an adventure.  Find peace.

And have a wonderful weekend!

Yours,

Lisa

I have Endo : Can I donate my organs?

organ transport

One of the things I really enjoy about WordPress is that it allows you to see some search terms that brought people to the site.  This week, someone searched online for “can I donate my liver if I have Endometriosis on my liver?”  What a great question!  I also have Endometriosis on my liver (the doc couldn’t remove it due to the sensitive nature of the organ, but slapped some medication over it to hopefully slow it’s progression and ability to spread).  So let the research began.

Organ Donation

I haven’t been able to locate any site that specifically says you are unable to donate your organs purely because you have Endometriosis.  In a nut shell, upon your death (if you are a registered organ donor), the medical examiner will look at your state of health when you died and the health of your organs and determine exactly what can, and cannot, be donated. They will likely run a barrage of tests to make sure they won’t be passing on any potentially-terminal illnesses, too (HIV positive and cancer patients are not able to donate organs).  The final decision rests in their medically-trained hands.  Remember, the donation doesn’t have to be a liver; someone could need your skin, your eyes, your heart, etc.  Just because they may not be able to use one organ doesn’t mean that they can’t use others…And who’s to say they can’t use our Endo livers?

I emailed Donate Life America this question and they verified to me that “it is at the time of death that it’s determined if a person has organs that are viable for donation. Endometriosis doesn’t preclude donation.”

All websites I read encourage you to become an active organ donor, if you are not already.  If you want, there are links below on where to find out how to sign up to be an organ donor in your area.

And interestingly enough, some countries (such as Belgium, Poland, Portugal, Spain, and France) have a “presumed consent” rule when it comes to organ donation.  Unless the decedent specifically requested that no organs be donated, they’re donated.

Blood Donation

The New Zealand Blood Service have asked that you wait approximately three months after any Danzanol treatments before donating blood, and this is assuming you presently are not suffering from any Endometriosis symptoms.  A medical officer will also review your condition and history before clearing you to donate.

Endometriosis does not affect our ability to donate blood. However, if you are having low iron levels, you may not pass the hemoglobin test (where they prick your finger and check your levels) in order to give blood.  If you don’t pass, you can always come back and try again. Eat lots of leafy greens!

Signing up to Donate Organs

Interested in registering to be an organ donor?  Click on these helpful links below:

Australia : Australian Government Organ and Tissue Authority

Canada : Canadian Transplant Society

Ireland : Irish Kidney Association (will provide a downloaded organ donor card)

Italy : Ministero della Salute

Japan : Japan Organ Transplant Network

Mexico : Cenatra Centro Nacional de Trasplantes

New Zealand : Organ Donation New Zealand

Northern Ireland : Organ Donation Northern Ireland

South Africa : The Organ Donor Foundation of South Africa

Sweden : Socialstyrelsen

United Kingdom : UK Organ Donor Registry

United States : Donate Life (also, most states allow you to register as an organ donor with your local DMV office)

For a database of all countries that perform organ transplants, and their contact information for each donation agency, please check out the International Registry in Organ Donation and Transplantation.

(Updated April 26, 2017)

Resources:

International Registry of Organ Donation and Transplantation

Lahey Hospital & Medical Center

Mayo Clinic

Missouri Department of Health & Senior Services

New Zealand Blood Service

NHS.uk

University of Michigan Transplant Center

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

Truth, Theory, or Tall Tale?

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Endometriosis is hereditary.

Theory

Many conditions are passed down from generation to generation…something in the genes.  But is Endometriosis passed down from generation to generation, effectively cursing the female members of a bloodline?  Yes and no.  If your mother, sister, or aunt have Endometriosis, you have a greater chance of having it yourself.  But are you guaranteed to have Endo if your close female relative has it? No.  And a lot of Endo sufferers do not have a family member with Endo.

If you have Endo, are you going to pass it on to your daughter?  Maybe.  Maybe not.

The good news?  There are ongoing studies to identify the genetic markers and risks of Endometriosis.  One day they’ll figure this out.

Resources:

Women’s Health

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.

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

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

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

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

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

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

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

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

A 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.

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 March 13, 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

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

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

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

Mayo Clinic

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

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

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

Stabroek News

The Atlantic

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

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

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

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

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

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

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

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

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

New Pill? Viagra for Women!

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You may have heard in recent news that the an FDA advisory committee is pushing for the approval of a new drug, Flibanserin, which is being hailed as “viagra for women,”  and decision by the FDA is expected on or before August 18, 2015. Many women suffer from a low sex drive for many different reasons.  I myself have suffered with one since my Lupron Depot injections, which were immediately followed by a continuous birth control.  My libido is nearly non-existent nowadays. Blah.

But what is this drug? What are the potential side effects? How long were the clinical trials?  All of these questions come running to the tip of my tongue – will the pros outweigh the cons?  Will there be interactions with my birth control pill?  Less questions, MORE RESEARCH!

Flibanserin

In 2006, Flibanserin was first tested and developed by a German pharmaceutical company, Boehringer, as an anti-depressant medication. The drug lowers serotonin while raising dopamine, and norepinephrine levels in a woman’s brain.  The initial anti-depressant trials of the drug with women showed an increase in sexual desire, which prompted new studies with thousands of women.  The hope was to pass it off as a libido-increasing drug to combat the affects of hypoactive sexual desire disorder (HSDD).  However, due to it’s failed attempts at FDA approval to treat HSDD, Boehringer sold the rights of the drug to Sprout Pharmaceuticals in 2011. Sprout Pharmaceuticals filed their patent in 2014.

Sprout Pharmaceuticals was developed in 2011, solely for the purpose of creating a libido-enhancing drug for women.  They have not produced any drugs on the market, to date.  However, several of their executive team hail from other pharmaceutical companies such as Slate Pharmacueticals (manufactured Testopel), Halozyme Therapeutics (manufactured Hylenex), Actient Pharmaceuticals (a company which acquires pharmaceutical companies), Hyman Phelps & McNamara (a food & drug law firm), and AAI Pharma (a pharmaceutical testing company).

The suggested dosage for women would be 100mg per day, likely taken at night.  For some women in the clinical trials, it took 4-8 weeks before they felt any improved sexual response.

There is a huge lobbying campaign by several women’s groups to approve this drug, stating that men have a lot of approved libido-enhancing drugs, where women have zero.  I see their point…but…safety first!  The National Women’s Health Network strongly opposed the drug’s approval at the recent hearing due to concerns over side effects.

Potential Side Effects

Since 2010, the FDA rejected Flibanserin’s approval due to concerns over the side effects, which may include dizziness, fainting, sleepiness, low blood pressure, and nausea.  Sprout Pharmaceuticals has tried twice since 2013 to have the FDA approve the drug, and failed.

Side effects may be worsened by prescription drugs (particularly, birth control pills) and/or alcohol.  There were also concerns expressed at the advisory committee hearing over a potential for increased accidents (trips, falls, vehicle collisions, etc.) due to these side effects.  Reportedly, one woman reacted so poorly in a clinical trial that she had to be hospitalized.

However, the advisory committee feels that with proper warnings and labels, this drug has the potential to change the lives of a lot of women, and their significant others.   They are also hoping a bona fide, approved drug will help steer women clear of unsafe internet wonders and snake oil treatments for lowered libidos.

Studies

There are countless reports and studies regarding Flibanserin available to you through the interwebs.  I will discuss a few here, but for a comprehensive list, please click here.

Sprout Pharmaceuticals ran a 24-week trial, and the results showed that the Flibanserin had positive effects for 46-60% of the women taking that pill; however, the advisory committee altered those numbers once they figured in the placebo pill.  After the committee’s alterations, they found only 10% of women had positive feedback; which was about an increase of one sexually satisfying event per month.  The advisory committee stated that the drug had “marginal to moderate” results.

There was also a two-year cancer study on the effects of raised dosages in mice, which found an increased risk of breast cancer tumors (these mice received four-times the recommended dosage).  There are reports that studies of Flibanserin lasted anywhere from one year to 18 months, and the FDA is concerned over the lack of time taken to evaluate any potential cancer risks.  Sprout Pharmaceuticals reminded the advisory committee that just because studies in lab animals shows an increased potential for developing breast cancer, doesn’t mean those study results will transfer over to humans…

What Now?

The advisory committee has begun preparing their recommendation package to be presented to the FDA to aid in their decision.  This will include suggested warning labels, educational materials, training for professionals who will prescribe this medication, etc.

Some members of the advisory committee who voted against the pill’s approval are concerned over a lack of data and information, and feel the benefits do not outweigh the risks.

My 0.02

I hate taking pills.  I hate feeling ill from taking pills even more.  I especially run from pills that may potentially harm me, or come with ludicrous warning labels and side effects.  Just not worth it.

I’ve always felt that Big Pharma is lookin’ for that Next Big Thing to make a buck.  Many people do not agree that this pill is the “viagra for women” since the chemical and physical reactions of viagra versus Flibanserin are completely different: it does not increase blood flow to a sexual organ; it increases and decreases chemicals within the woman’s brain to alter sexual interest.  “Viagra for women” may be a general misleading and miscategorized statement.

So, if this pill hits the market, I’ll avoid it.  A little prompting by my very patient partner goes a long way in reminding me just how much I’ve missed sex.  Just because I don’t have a sense of initiation any further doesn’t mean I want it any less.  I just…forget…how much I want it.  However, that being said, I know there are a lot of women who may want to pursue this little pill route; and more power to them.

But I am curious and will continue to follow these stories as they break.

What are YOUR thoughts? I’d love to hear them…leave a comment below.

Resources:

AAI Pharma

Flibanserin-HSDD – timeline

Forbes – 6/4/15 article

Google Patents – September 2014 – Method for the Treatment of Premenstrual and other Female Sexual Disorders

Google Patents – June 2014 – Use of Flibanserin for the Treatment of Post Menopausal Sexual Desire Disorders

GTCR – re: Actient Pharmaceuticals

Halozyme

Hyman, Phelps & McNamara, P.C.

International Business Times – 6/8/15 article

MedCity News – 4/4/12 article

National Post – 6/5/15 article

National Women’s Health Network – 6/3/15 press release

Science 2.0 – 6/6/15 article

Sprout Pharmaceuticals – 2013 (Article) – Efficacy of Flibanserin in Women with Hypoactive Sexual Desire Disorder : Results from the Begonia Trial (the 24-week study)

Sprout Pharmaceuticals – 2/11/14 press release

Sprout Pharmaceuticals – 6/5/15 press release

Sprout Pharmaceuticals – executive leadership information

Tech Times – 6/8/15 article

Thomas Reuters – 2014 (Abstract) – Flibanserin for Female Sexual Dysfunction

US News – 6/3/15 article

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

Feel Good Friday!

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Today’s Feel Good Friday topic is a bit on the somber side.  I have several friends who are struggling with depression right now.  And it’s so very painful to watch.  As an outsider looking in, I feel I say all of the wrong things, and due to the miles between us, I cannot be there to hug them, hold them, or anything…So I watch from a distance, offer my pitiful words of support, and hope for the best.

American author, Barbara Kingsolver, put it nicely:

“There is no point treating a depressed person as though she were just feeling sad, saying, ‘There now, hang on, you’ll get over it.’ Sadness is more or less like a head cold- with patience, it passes. Depression is like cancer.”

For those of you suffering with depression, and yes, suffering is the appropriate word: you are not alone in this struggle.  There is light at the end of the tunnel, somewhere.  I wish I could point you to that path, but I do not know it.  Your friends and family will be here for you, even though we may not know what best to say or how best to act. We are here.  And for those of you who are my close friends and are dealing with this, you know I love you. Yes, you.