Infertility

For one reason or another, many EndoWarriors find it very difficult, if not impossible, to conceive. And even with IVF treatments, many are unsuccessful or difficult.

Reader’s Choice : Can Men Get Endometriosis?

| Bloomin' Uterus
Male symbol

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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New Study : Endometriosis and Semen

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New unwrapped condom

So there’s an article that was recently published that has a lot of the EndoCommunity in an uproar today on Facebook.  The article was title, “How your sex life may influence endometriosis,” published on May 1, 2015, by MedicalXpress. My initial knee-jerk reaction last night was to be furious.

I interpreted the article as saying that sex can cause and affect Endometriosis growth; to be more precise: seminal fluid can affect Endo growth.  Semen.  Baby-MoJo.  I’ve had my Endo pain since my early years in high school.  And I did not have sex until I was 21.  And my cramps were pretty damn bad back then.  How dare a study suggest that sexual activity had anything to do to heighten my endo symptoms or progression.   And my outrage was further fueled by others’ reactions about the same conclusion.

I’ve decided to take my time, read the study slowly, and try to digest what it is the study is trying to tell us. Wait. Step back. Breathe, breathe.  Relax.  Now go read the study…

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Endometriosis & The Lungs

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Graphic of human lungs

I’ve read bits and pieces here and there that Endometriosis can grow on or inside of your lungs.  An EndoSister had posted in one of the many Facebook support groups that I follow that she has Endo on her lungs, which causes her to cough up a lot of blood.  Others replied that they have it as well, but it leaves them in the hospital with collapsed lungs every month.  Which got my juices flowin’ to find the documented cases of Endometriosis on the lungs, how it was excised (if at all), etc.  Here goes!  This is NOT meant to scare you.  Just educate us all, including myself.

Endometriosis is usually found within the pelvic cavity, but has also been known to be found northward and latching onto the liver and diaphragm.  It has also been found on the membranes surrounding the lungs and heart.  Even rarer, it has been found on the brain, in the lymph nodes, and on the eyes.

Thoracic or Pulmonary Endometriosis is when Endometriosis implants/adhesions are found in your thoracic region, and can be found on your trachea, bronchi, diaphragm, lungs, or heart.  It was first medically documented in 1953.  Today, we focus on the lungs.

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Meet Dr. Idhaliz Flores Caldera

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Dr. Idhaliz Flores Caldera
Idhaliz Flores Caldera, Ph.D.

Many of you have read my blog entry Stress Levels May Affect Endo. In that blog, I mention Dr. Caroline Appleyard, her colleagues, and their research.  Dr. Appleyard and Dr. Flores Caldera have agreed to answer some questions I’ve posed to them.  Both doctors are incredibly busy; however, have still managed the time to answer these questions!

Q&A Session with Idhaliz Flores Caldera, Ph.D.

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Share Your Story : Lauren

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black and white photo of a glamourous woman in a gown and wearing diamond jewelry

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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Share Your Story : Lisa

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A red-headed pirate laughing and holding her tankard of ale

I realized that I’ve asked you to share your story, but haven’t actually put mine out there in one place (maybe a snippet here or there)….time to get everything out on paper so it leaves my head and heart (sorry it’s so loooooong…I couldn’t stop!).  I was diagnosed when I was 35 years old in 2014. 

My Journey:  I started my period when I was 12 or 13 years old.  I remember them hurting (but not as devastating as they have in my adult years), but figured it was normal.  I grew up hearing we were cursed because of Eve’s decision to sin, punished into pain and childbirth. I also heard that some of my family members had really painful periods. So again, it was normal. Classmates said they had cramps, too…so I figured mine were just normal. I became that girl in Junior High and High School that would walk around with a hoodie tied around her waist every month because I’d almost always overflow.  I had classmates come up to me during the really hard cramps, ask if I was okay, that I was white as a ghost and sweating…and I’d spend time curled up in the Nurse’s office after taking an Ibuprofen. But it was normal. Every girl went through this.  Right? My family physician had wanted me to go on birth control, but just to prevent “baby accidents” from happening, which I quickly dismissed since I had no intention of having sex. Little did I know BCP may have helped with the pain…

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Share Your Story : Mel

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Group of four women posing together for a photograph

Mel was diagnosed with Endometriosis when she was 21.  Now 28, Mel and her husband are hoping to expand their  family.

Mel’s Journey:  I was diagnosed and have had two surgeries since. Now trying to conceive seems harder then ever and about to go through IVF. But I am also very lucky to have such a wonderful family and a supportive husband with a fur baby! =)

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Share Your Story : Tara

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Text that reads Endometriosis has no real face. I am its face.

Tara was 24 when she was diagnosed with Endometriosis.  Now 32 years old, she shares her experience with us…

Tara’s Journey: I am sick. I am chronic illness. I am not curable. I am angry. I am scared. I am pain. I am draining. I am sad. I am a fighter. I am strong. I am weak. I believe. I hope. I dream. I wish. I love. I suffer. I struggle. I laugh. I cry. I scream. I am mad. I am endometriosis.

Endometriosis has changed my life in more ways than I could ever possibly explain. It has ripped away part of me and has destroyed many of my hopes and dreams. I feel like an alien is living inside my body. I am no longer in control of my future. Endometriosis owns me. It holds ownership to one of the biggest dreams I have ever held. It has taken away my right as a woman to bare a child. It has left me hopeless, resentful, angry, confused, and scared, scared to death that one day it may take my life. No endometriosis cannot kill me, I understand that but it can cause things that can.

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