Pelvic Pain

Even while not on their period, many EndoWarriors have pain in their pelvic cavity, or elsewhere

Share your Story : Rebecca

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My Journey with Endometriosis & Adenomyosis by Rebecca L. Gibson

I was always healthy and active in sports while growing up. In 2008, I married my childhood sweetheart and we began our life together. Everything changed in 2009 when I developed symptoms of endometriosis. Endometriosis (en-doh-mee-tree-oh-sis) is an extremely painful condition where tissue resembling – but not the same as – the endometrium (lining of the uterus) is found elsewhere in the body, outside the womb. Although symptoms may indicate endometriosis, an official diagnosis can only be made through surgery. Common symptoms include, but are not limited to –pelvic pain apart from menses, debilitating menstrual pain, backache/leg pain, painful intercourse or pain associated with sexual activity, painful bowel movements, fatigue, bloating, constipation/diarrhea, which may worsen during menses, pain with exercise, painful pelvic exams, painful urination, sciatic pain, infertility/pregnancy loss.

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Share Your Story : Marixsa

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Marixsa is a fellow blogger and Endo advocate.  She was diagnosed when she was 28 years old.  Now 33, her story is a heartbreaking, yet encouraging, one.  Almost two decades of suffering without a diagnosis, being told she was exaggerating, living in fear of intimacy, missed diagnoses (not misdiagnosis…but literally doctors not seeing her Endometriosis while in surgery), followed by a myriad of additional surgeries, emotional rollercoasters, fertility treatments, and miscarriage.  Although scarred, Marixsa is truly a strong and beautiful Warrior, rich in faith and determination.  She continues to fight, for herself and for other EndoSisters.    And I hold her among my heroes.

Marixsa’s Journey: Like so many women, endometriosis affected me years before I was diagnosed. It’s been quite a journey, which is why this section is so long. Here’s where this road has taken me:

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Share your Story : Tine

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Tine is the co-captain of Team Zimbabwe’s 2016 EndoMarch.  She and Nadia are seeking to raise awareness regarding Endometriosis, menstrual health, education the medical community, and letting women in their country know that they are not alone…and this pain is not normal.  Tine is also heavily involved in the NGO As I Am Foundation, a foundation that creates projects that are sustainable for the disadvantaged.  Nadia and Tine have shared their stories in the hope that it will encourage other African girls to be aware and not ashamed.  Tine’s story follows:

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Share your Story : Nadia

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Nadia is the team leader for Team Zimbabwe.  They’re putting together the first ever EndoMarch in their country and are hoping it will be a great success.  They are also hosting a February 27, 2016, awareness campaign with guest speakers to try to not only raise awareness of our illness, but hold in-depth conversations about possible causes and future treatments.  Nadia and I have been talking for the past several days and she’s allowing me to share her story with you today.

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Silent Endometriosis

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There are many usual signs and symptoms of Endometriosis.  If you suffer from this disease, you know them all too well. One of our readers, Tanya, let us know that she suffers from “Silent Endometriosis.”  What’s that?  She has an official Endometriosis diagnosis, but only some of the symptoms associated with Endometriosis.  Some people with Silent Endo don’t have any Endo symptoms (this is known as asymptomatic Endometriosis). Does that make her any less of an Endo sufferer? No, not at all.  She suffers from the same invasive disease as the rest of us.  Just in a different way.

A whole slew of questions were raised, which we’ll look into:

  1. Why do some people present with classic symptoms like crippling pain and some don’t?
  2. And, given that silent endometriosis exists, this makes me wonder if the overall incidents of endometriosis is higher than is usually quoted. How many have this disease and have no idea?
  3. Since the symptoms don’t present as normal in silent endometriosis, what are some of the other signs that people possibly facing this condition can look out for?
  4. Why do some patients who are riddled with endometriosis have no pain, and others with very little endometriosis have excruciating pain?
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Bladder & Endometriosis

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Diagram of the urinary system in humans

You’ve likely heard that Endometriosis can grow in all sorts of places inside the body.  Well, the bladder and urinary tract are no exception.  Endometriosis implants can grow on or inside the walls of the bladder or along the urethra.

Symptoms

Common symptoms patients may complain about with bladder Endo are frequently needing to pee, pain when the bladder is full, painful urination, and an urgent need to pee.  Some also suffer from blood in their urine when they’re on their cycles (may be hard to distinguish…given the natural course of what a period does…).  This urine-blood may not be perceptible to the naked eye and require a lab test.  And as usual, many EndoWarriors only have these symptoms during their periods; others have them 24/7. It should also be noted that many with bladder Endo don’t present any symptoms.

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Reader’s Choice : Can Men Get Endometriosis?

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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, cis-men develop Endometriosis.  Transmen also suffer from the disease. But we will focus on cis-men for this blog: 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:

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Endometriosis on your skin

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Diagram of human skin

It’s about time I research more about Endometriosis being found in places other than your pelvic region.  We’ve already covered lungs, spine, and eyes, and today we’re going to delve into cases of Endometriosis and skin.  Skin? Yes, skin.  I’ve read that it’s rare, just like the other areas outside of the pelvic cavity…but, it does occur.  Some theorize it is implanted via the lymphatic orpro vascular systems; others think the cells are transplanted via surgery.

There seem to be two common categories of Endometriosis and the skin : spontaneous Endometriosis and scar Endometriosis.  Spontaneous Endo simply appears in random places on healthy skin (cutaneous or subcutaneous).  Scar Endo is found within scar tissue from prior surgeries or injuries.  It appears that surgical excision/removal of the Endometriosis lesions from the skin is the most common and effective way of handling the lesions.  Some surgeries may leave defects, which may (or may not) be repaired or rebuilt with a surgical mesh.  Some studies suggest that hormonal treatment may be too harsh for the patient for solitary lesions.

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Share Your Story : Lauren

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Lauren was diagnosed in 2011.   She has had ongoing battles with fertility, miscarriages, and a battle for disability benefits.  Her story is a heartbreaking one.

Lauren’s Journey: I first started going to South Jersey Fertility in February 2010, to help conceive a pregnancy. On August 4, 2011, I started to develop excruciating pelvic and abdominal pain. The pain was so bad, I had to go to the emergency room.

On September 16, 2011, I had a laparoscopy, which found classic endometriosis lesions of the left pelvic sidewall and a single band-like adhesion involving the right ovary to the uterus. There was a large peritioneal window under the right ovary. This is consistent with endometriosis.

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