New Case Study: Endo … in the buttcrack

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A study published online in June 2017’s edition of the Journal of Gynecology, Obstetrics and Human Reproduction discusses a case of Endometriosis in a very peculiar and very extra-pelvic location: the buttcrack! (You can read the entire article here).

A 24-year-old woman in France went to her doctor because over the past 2 years, a spot in her buttcrack would bleed during her period. She also suffered with painful periods, painful sex, diarrhea, and constipation. Upon examination, her doctors found a 3mm blue nodule in her buttcrack.  They immediately suspected cutaneous Endometriosis because of her pain, symptoms, and the fact that it bled during her period.  An MRI seemed to confirm their suspicions, but the patient refused excision of the lesion and no biopsy was conducted.  Instead, she opted for hormonal treatment.  Her choice of treatment offered her some relief.

They authors stress that any blue-ish nodule with similar symptoms be suspected of Endometriosis.  And they also stress the uncertainty with theories on how it ended up…there.  A very interesting thing…and just one more weird place on the body that it can manifest.

 

Resources:

Furet E, et al. Spontaneous intergluteal cleft endometriosis. J Gynecol Obstet Hum Reprod (2017), https://doi.org/10.1016/j.jogoh.2017.06.001

~ 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

Share Your Story: Stephany

After suffering with horrible periods and cramps since 13 years old, Stephany was 31 years old when she finally received answers: her Endometriosis diagnosis.  Two years later, she shares her story with us.

Stephany’s Journey: I was 13 the first time I had a “bad cramp”. From then on they never went away & just got worse. I would double over in pain, movement in general while having a cramp just made it worse like a nerve being shocked in my abdominal area. I would just have to stay still until the cramp passed. I would ask to stay home from school during the first day or 2, and luckily a few times my grandmother let me. I tried things like Midol & other off the shelf pain meds but they didnt do a damn thing. It was like I just ate a skittle to try to manage my cramps, no relief.

When I was 14 we went to a doctor and talked about my cramps and I was prescribed Ponstel. It’s a prescription pain medication specifically for menstrual cramps. It worked great and I just stayed on it until a couple of years ago. But over the years my cramps were getting worse, and the medication wasn’t always helping. I started taking a double dose of it on the bad days just because it was the only thing that helped. That was against my doctor instructions but I HAD to ease the pain.

I missed work at times and asked to go home because I just couldn’t walk without that shooting, stabbing pain with every movement. My managers gave me a hard time about it because they didn’t think it was “that bad” and I got wrote up for these occurrences. It came to a point that they sat down with me in the office and talked about how I needed to get this under control or I may loose my job due to my attendance. But I couldn’t help that I needed to be off a few days out of the month…I wished they could understand it was real.

At age 31 I went to the doctor about pain in my ovary area & I couldn’t have intercourse without pain. This was taking an emotional toll on me because I felt inadequate when it came to my husband. Now to clarify he has been nothing but wonderful, understanding & supportive, this was just my own feeling about the situation. The doctor checked me out in every way possible, did ultrasounds, exams, gave me medication, all that he could think of…nothing changed. He did find that my left ovary was 3 times the size it should have been because it wasn’t working properly, which explained the ovary pain. He put me on birth control to help regulate that issue & it worked for a year. Except that I kept ending up with multiple infections that added to my annoyance!

I asked to be refereed to another doctor. That was the best thing ever. This doctor asked me a bunch of questions id never been asked in relation to my pain. Did i have migraines? For how long? When did the cramps start? Did i always have a heavy period? He asked about my ovary issues. During that first visit this doctor told me he believed I had endometriosis and was scheduling me for a laparascopic surgery. Laparoscopy is the ONLY WAY to 100% confirm a woman has endometriosis. It does not show up on x-rays or ultrasounds.

When I woke up from surgery the first words out of my mouth were “did you find anything?” Because I had to know that there was some reason for feeling this way! I had to know there was something wrong and it wasn’t in my head! What this doctor found was in his words “one of the most severe cases of stage 4 endometriosis” he’d ever seen. My abdominal organs were so covered in endometriosis tissue that they were knitted together and had to be separated. My right ovary had been destroyed, and he couldn’t separate my uterus from my rectal area due to possibly damage to those muscles which would result in me needing to use a colostomy bag. But I was relieved, I had an answer, I knew what was wrong with me. I was going to need another surgery though.

But first I had to take a 6 month treatment that put me into a medical menopause to help “dry up” the endometriosis. Estrogen feeds endometriosis & makes it grow, so he needed to stop the growth before he old attempt another surgery. He told me that so much damage had been done that I had been rendered infertile and he recommended a hysterectomy. He said that after seeing my insides that he believed I had had this since I was about 13. Those first cramps I had were the start of my endometriosis.

It took 4 doctors, from age 13 to age 31 to figure out what was wrong with me. And then the damage had already been done.

I’m just finishing my last month of treatment and having my hysterectomy next month & I just pray it all ends there. My biggest fear is still having pain after. Because despite common belief, endometriosis can still come back after a full hysterectomy. There is no cure. This is why I blow my Facebook up with information on this disease, I don’t want ANY WOMAN going through the unnecessary.

Words of Advice for Us:  Trust your body and make yourself heard. Don’t settle for the doctors explanation, know yourself.

If you wish to contact Stephany, you may email her here.

I want to send a special Thank You out to Stephany for being brave enough to share her personal story, struggle, and victories with us today.  Good luck with your upcoming hysterectomy!!  Please keep us posted on your progress, and if you need anything before or after your procedure! We are family!! ❤ You are a beautiful, brave, and strong woman.  Thank you!!!

 

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And if YOU would like to share your story, you can do so by clicking here.  The best part about this disease is the strong network of love and support from our fellow EndoSisters, and our friends and family, too.

Yours, Lisa.

Lupron Depot: Q&A

Q&A

As many of you know, I was on Lupron Depot for six months for my Endometriosis.  I wrote about my personal experiences here and also how my life had changed after my last injection (you can read that, and other’s experiences, here).

Recently, a friend of mine learned he will be starting Lupron Depot to treat his prostate cancer.  My husband was surprised this morning when I told him.  He didn’t realize the drug’s original purpose was to treat cancer…in men!  And it’s because of the connection with cancer that many people think Lupron Depot is chemotherapy.  It isn’t.

So, today’s blog entry is here to accomplish a few things:

  1. Discuss the origins and history of Lupron Depot;
  2. How it morphed from a cancer treatment to a treatment for hormonal issues (such as Endometriosis, fibroids, and central precocious puberty); and,
  3. Clarify why I think Lupron Depot is not considered chemotherapy.

I am in no way encouraging or discouraging the use of Lupron Depot in your treatment regimen.  This will not be a commentary piece about the pros & cons of the drug.  The decision is yours.  Research the drug, the side effects, and have lengthy discussions with your physician.

Let the research begin!!

What is Lupron Depot?  In a nutshell, it’s a drug delivered by injection that shuts off your hormones.  In men, testosterone; in women, estrogen.  It’s not an easy treatment to endure, that’s for sure…but every person is different in how their body reacts to the drug.

When was Lupron Depot created?

In 1977, two companies, Takeda (Japan) and Abbott Laboratories (USA), came together and formed TAP Pharmaceuticals, Inc.

In 1985, Lupron Depot was approved for the American market to treat prostate cancer.  Over the years, label improvements, dosage changes, and  better syringes were approved by the FDA.

In 2008, Takeda and Abbott ended their joint venture of TAP Pharmaceuticals.  Abbott Laboratories retained “the Lupron franchise.”

In 2013, AbbVie emerged from Abbott Laboratories and took over the manufacture and distribution of Lupron Depot.

When was it approved for prostate cancer treatment?

In 1985, Lupron Depot was approved to treat prostate cancer.

If it’s not chemotherapy, what is it?

I’ve talked to nurses and doctors about this question multiple times.  I’ve done research.  And I am strongly opinionated on the subject.

It’s a hormone therapy drug.  It works with the pituitary gland and shuts down the body’s ability to produce testosterone or estrogen.  That suppression, in theory, gives the body a fighting chance at beating the cancer because those cells are no longer being fed the hormone it desires so badly to grow.  Lupron Depot does nothing to physically attack cancer.  It simply alters the body’s ability to create hormones that may feed cancer cells.  This starvation effect can either slow or shrink the cancerous growths.

It is not chemotherapy.  I repeat: it is not chemotherapy.

Chemotherapy medications attack the cancer cells directly.  Lupron Depot is a supportive medication that may starve the cancer cells.  It’s like comparing apples and oranges.

When was it approved for Endometriosis treatment?

The best I can find, Lupron Depot was approved by the FDA in 1990 for treating Endometriosis.

When was it approved for Central Precocious Puberty?

In 1993, Lupron Depot-PED was approved by the FDA to treat a childhood hormonal imbalance called Central Precocious Puberty.  What’s CPP?  It’s when children who are younger than 8 or 9 years old (depending on their sex) show signs of puberty and sexual maturity.  Lupron Depot suppresses the hormones, thus suppressing the pace of puberty.

[I know I said I would keep the commentary to myself, but I have to voice this one: I could not even imagine a child going through the side effects I went through…breaks my heart.]

There!  I’ve accomplished what I set out to do today.  *whew* If you’re reading this and I got my dates wrong, please feel free to correct me.  If you’d like to express how Lupron Depot has affected YOUR life, please do so by clicking here.

Resources:

AbbVie.com

Chemocare.com

Chemotherapy.com

Crunchbase.com

CVS.com

Endofacts.com

FDA (1993)

FDA (1995)

FDA (1998)

FDA (2001)

Genetics Home Research

Gregthatcher.com

Lupron.com

LupronPED.com

LupronProstateCancer.com

LupronProstateCancer.com – timeline video

LupronVictimsHub.com

Takeda.com

~ 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 Fridays

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I miss these gals!

Well, here we are at the end of another week!

Today’s quote goes out to all my friends and loved ones.  Consider it a testament to your incredible You-ness!

“Create an environment that is conducive to your emotional and personal growth. Surround yourself with caring and positive people who support you, and reflect who you want to be.” 
― Steve Maraboli

I consider myself lucky to have you with me.  Have an incredible weekend!

Love, Lisa

 

Blogs I updated this week:

Bladder & Endometriosis:  added a July 2017 study of 46 women with endometriosis affecting their ureters.

Have Endo and live in California?

A journalist reached out to me for an interview, and she would like to talk to YOU, too, if you suffer from Endometriosis and live in California:

Hello, my name is Nadra Nittle. I’m a journalist writing an article for a health website about the barriers women face when trying to get excision surgery for endometriosis. I’d like to interview women in California in particular about their experiences and was wondering if you might be interested in speaking with me. By excision surgery, I’m referring to the procedure in which the endo lesions are cut off rather than burned off. Excision is supposed to be the gold standard of treatment. Please contact me at nadranittle@gmail.com if you’re willing to speak with me. Thank you.

If you’d like to help, please send her an email right away!

 

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–S3 and the right pudendal nerve and vessels at the entrance into Alcock’s 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 😉 Validate my writings.  Or challenge them.  And ALWAYS feel free to consult with your physician. Always.  Yours ~ Lisa

Ten tips for living well with endometriosis from the EUK Information Day.

My wonderful fellow-blogger, Claire, shared these incredible tips on dealing with Endometriosis.

The Endo The World?

A little while ago I attended an Information Day hosted by Endometriosis UK in London. It was mainly aimed at newly diagnosed women and their friends/ families, but I thought it would be fun to go along to catch up with people and to hopefully pick up some new tips.

Image result for endometriosis banner long Image credit: Endometriosis UK

I thought it might be useful to share some of the useful tips I picked up along the day for those of you who wouldn’t be there in person.

1- Find and build your tribe.
Having endometriosis is really rubbish, and can feel very isolating and frightening. Invest time and effort building up a support network of fellow endometriosis suffers (aka your ‘tribe’) as they are more likely to understand and relate to your struggles than your family and friends who do not have the disease. Fellow patients can also be an excellent source of information…

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