Helping women with chronic illnesses

Voices On Endometriosis

As we kick off Endometriosis Awareness Month, two of my friends who have endometriosis have graciously agreed to write about their experiences here. I would like to thank them for speaking out about it. When we unite our voices together, they are stronger.

Dr. Diane Neal, is chronically healing from multiple illnesses including Stage IV endometriosis, polycystic ovarian syndrome (PCOS), hypothyroidism and lipo-lymphedema. She has never been pregnant. Her inability to conceive naturally was confirmed when she was forced to have both fallopian tubes removed due to endometriosis-related complications. A professor, she loves both research and teaching.

I’ve been ill with Stage IV endometriosis since age 12, but I wasn’t diagnosed until age 21 (that’s typical; the average time for receiving a diagnosis of endometriosis is 10 years from the onset of symptoms.) Ever since I was very sick every month starting with my very first period, I had a sense that I would never get pregnant. Maybe that is why I claimed for years that I didn’t want children; I’m not sure. My intuition was confirmed in 2008, when I had an emergency surgery to remove a very large ovarian cyst filled with endometriosis (this is called an endometrioma). During the surgery, the surgeon found that ovarian cysts had destroyed my Fallopian tubes. She had to remove one at the time of the surgery because it was so badly damaged, which was traumatic because I didn’t know there was a chance of that happening, and I learned about it – from my mother, not my doctor – after the surgery. My other Fallopian tube was cut apart a few months later, because the surgeon couldn’t access it for removal due to extensive endometriosis-related adhesions. With no functioning Fallopian tubes, a woman has no chance of getting pregnant, because the sperm can’t get to the egg.

I have multiple university degrees, a successful career that I love, a wonderful husband, a cuddly Chihuahua, and amazing friends and family. For those reasons and more, I can’t say I feel like my life is worthless in the slightest. However, as I enter my late 30s, I frequently wonder whether the experience of raising children is a not-to-be-missed life experience. Soon, my husband and I need to decide whether we want to attempt in vitro fertilization (IVF), consider adoption, or remain childless. IVF has unpleasant attendant side effects, and there is no guarantee it will work. As an adoptee myself, I believe that adoption can be wonderful. At the same time, adopted children are not replacements for biological children, and the bureaucratic process of adoption is daunting. (Honestly, how many natural parents have to be subjected to a “home study?”) The third option, remaining childless forever, sounds so permanent. (I’m an only child, so who would get the family photographs?) There is a difference between remaining childless and being childfree by choice.

At times, I fight feeling jealous of people who have natural children, especially those who have them effortlessly. We all know those people: “We got pregnant the first month we tried!” When I hear people complain about their kids inconveniencing them, I truly wonder if they know how blessed they are to have those problems. When I see photo after photo of my friends’ kids on Facebook, I wonder if my friends have heard of endometriosis or any other diseases that can cause infertility… or did they have similar problems, and beat the odds?

As I’ve learned, endometriosis won’t kill you, but it can cause indescribable physical pain, create powerful feelings of grief and loss, and alter the course of your life in unexplainably profound ways.

Endochick is a chronically healing endometriosis patient who also has diabetes insipidus, migraines, Sheehan’s syndrome, and dysautonomia. She is currently a graduate student. Her decision to pursue a Master’s Degree in Patient Safety was heavily influenced by her own firsthand experience as a patient. She is passionate about endometriosis awareness.

September 2006, the day my life changed.

There had been years of pain, years of massive monthly bleeds, years of self-medicating with Extra Strength Midol and Tylenol with Codeine. Years that blurred into a cohesive unit of agony and uncertainty. Years filled with “you’ll never have children” turning into “this pregnancy will be difficult” and then “this pregnancy could kill you”.

These were the wonder years. From the age of 14 to 26, I wondered. Was this normal? I would see my friends brush off the mention of their monthly “visitor”. “Visitor,” I wondered. “Mine doesn’t ‘visit,’ mine charges in, gun fire lighting the night sky, and seizes my life.” Mine was a third world dictator, and there was no United Nations to turn to, no respite for aching body.

At 18, endometriosis was “suspected”. Get married now, the doctors suggested. Whatever you do, one told me, have a child NOW. Two doctors refused to “confirm” my condition with a laparoscopy. Hormone treatments failed. I gained massive amounts of weight, suffered headaches, nausea, rashes, anxiety, and even panic attacks. Years passed and still doctors denied surgery to “confirm”.

It was not until I was 26 that I found a doctor to confirm I had endometriosis. It was stage IV. Adhesions covered everything – my ovaries, my tubes, my uterus, the cul de sac and even the intestines.

That year I began to blog. I was alone. No one around me could say those comforting words, “I know how you feel.” No one.

Isolation brought me to blogging about endometriosis. Through the blogging, I found solidarity. Women just like me commenting and e-mailing, “I thought I was alone”.

March 2011 – the journey has not always been smooth, but now I know I do not walk the road alone.

89 million women in the world with endometriosis. 89 million women who may feel lost and alone, but who are not.

We are truly stronger together.

Editor’s Note:

Despite what Endochick’s doctors implied, pregnancy is not a cure for endometriosis. (There is no cure for endometriosis).

A surgical procedure called laparoscopy is considered the definitive method for diagnosing endometriosis.

If you haven’t already, please sign the petition below. If you are a blogger and wish to display this petition link on your blog, please leave a blog comment to let me know and I will get the code to you so that you can display it. Facebook users can ‘like’ the petition (on the petition screen). Also, there is an optional comment field for each person signing the endometriosis awareness petition.

Interested in sharing the link for the petition on Facebook and/or Twitter? Here is a shortened link that can be posted:


This post was written by Jeanne at Copyright © Jeanne — All rights reserved.

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Reading: Voices On Endometriosis


1 JennNo Gravatar { 03.01.11 at 11:02 pm }

Thank you Diane & Endochick for sharing your stories.

Endo and infertility remain taboo topics. By sharing our stories, we are breaking the silence and uniting together. Like Endochick, I thought I was alone for a long time. It has helped tremendously to find my endo sisters online.

Thanks for kicking off Endometriosis Awareness Month with this guest blog post Jeanne!

2 DianeNo Gravatar { 03.02.11 at 11:15 am }

Jenn, you’re welcome. We must do what we can to unite and educate!

3 Endometriosis: What Is Yellow-Washing? — { 03.02.11 at 2:57 pm }

[…] Dr. Diane Neal, who you may have met in yesterday’s post, has written research papers on endometriosis. […]

4 Endometriosis Awareness Month: Recap — { 03.30.11 at 11:33 am }

[…] While I had many ideas for additional topics to cover this month, time has flown by and my energy has been limited. I decided to do a recap of the Endometriosis Awareness Month 2011 posts for those who may have missed one or more of them. First we heard from Dr. Diane Neal and Endochick in a guest blog post called: Voices On Endometriosis […]

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