[image quote}: "My pain wasn't valid until it was inconveniencing a man, and they wouldn't even talk to me about trying to address these issues on a physical, surgical level until I'd gotten to a point where I could 'deal with' the prospect of being infertile." - Abby, episode 16; Endometriosis Patient

[image quote}: "My pain wasn't valid until it was inconveniencing a man, and they wouldn't even talk to me about trying to address these issues on a physical, surgical level until I'd gotten to a point where I could 'deal with' the prospect of being infertile." - Abby, episode 16; Endometriosis Patient

16 Fun With Endometriosis (episode page)
Description: In this week's episode writer Abby Norman talks about her experience with #endometriosis, having others value her fertility and the satisfaction of her male sexual partners above her own health and quality of life, and the book deal she just signed to write about it. Episode 16 picks up Abby’s story a few years into her experience with endometriosis, but today's bonus episode is her story of when it all started, and her first surgery.

[intro]
Hey there and welcome you to In Sickness + In Health—a podcast about chronic illness, disability, medical traumas, and everyday uncomfortable healthcare experiences. My name is Cara Gael; I’m not a doctor or medical professional, I’m just a person and a patient who really wants to talk about this stuff more.

Nothing said on this show should be considered medical advice. If you’re experiencing a medical issue, please seek qualified medical help. I know the system sucks, but I wish you a lot of luck. Every person is different, even within disease groups, so none of my guests should be regarded as official representatives or spokespersons for their conditions. Please respect their very personal choices, and unless they ask for it, please don’t make suggestions about treatments or lifestyle changes. Unsolicited medical advice is almost never not annoying.

In today’s episode I talk to Abby Norman, a writer from Maine who lives with Endometriosis. We talk about her experience with the condition, how difficult it can be to diagnose, having others value her fertility and the satisfaction of her male sexual partners above her own health and quality of life, and the book deal she just signed to write about it.

You can find Abby on Twitter @notabbynormal, and read some of her other writing at medium.com/@abbymnorman. Her book will be called FLARE, and it will be published by Nation Books, at some point in the next couple years? As always, I’ll link to her work and more information about Endometriosis and menstrual health in the show notes. If you want more from In Sickness + In Health, check out insicknesspod.com and find us on social media @insicknesspod.

I’m trying harder to keep most episodes about or under an hour because I know people are short on time, and longer episodes can be hard on people with cognitive disabilities. So this episode picks up Abby’s story a few years into her experience with endometriosis. If you’re interested in hearing about the onset and first couple years, check out this week’s bonus episode that is around 30 minutes. I sound pretty bad because of a silly problem with my microphone that isn’t worth explaining, but luckily Abby does most of the talking and she sounds great.

Thank you so much to everyone who was so sweet to me about last week’s episode. In case you missed it, I talked about my own experience with Premenstrual Dysphoric Disorder, or PMMD, which is a very ridiculous, but serious version of PMS. I was really nervous to put myself out there like that, especially about a topic that is so stigmatized, but the response I’ve gotten has been heart warming. I’m so sorry so many of you have dealt with period problems too, but I am in very good company. These are issues that don’t get talked about enough, and I want to continue the conversation about menstrual health. Like Abby and I talk about in today’s episode, menstruation takes up a HUGE part of our lives, and we’re not supposed to talk about it?

Nonsense. Let’s keep talking.

If you’re having symptoms you suspect may be related to your menstrual cycle, of course, talk to a doctor about it. But if you don’t already, tracking your periods and symptoms is something you can start doing now that will help you and your doctor get a better picture of your menstrual health. There are a number of great apps available to smartphone users, or you can do it the old fashioned way in a notebook or planner. The better you understand your body, and the more data you can take to your doctor, the better your chances are at getting a diagnosis, and hopefully, effective treatment. Although, when it comes to women’s health issues, treatments in general leave a lot to be desired.

Endometriosis is a condition that effects 1 in 10 women of reproductive age, and like so many women’s health issues, is still very poorly understood and wildly under-diagnosed and under-funded. Like all menstrual health issues, endometriosis does not only affect women, but can affect anyone with a uterus, whether they identify as a woman or not.

With Endometriosis, tissue similar to the lining the uterus that bleeds each time you get your period—the endometrium—actually travels outside the uterus to other areas of the body. Among many other symptoms, this can cause severe pain, scarring, and adhesions that can basically “glue" the organs together. The condition can cause a number of serious complications in the pelvic organs, and wherever else in the body the tissue travels. Endometrial lesions most often develop in the pelvic cavity on the female reproductive organs I talked about in last week’s episode, the ligaments holding them in place, the other pelvic organs and the spaces between them. Endometrial lesions have been documented in other areas of the body as well, and in rare cases, as far as the brain.

The only way to definitively diagnose endometriosis is through exploratory surgery, which for a medical condition so common, is in my opinion, totally bananas. And getting a diagnosis or not can come down to your doctor’s ability and knowledge in looking for and excising lesions, or the endometrial cysts that can develop, called endometriomas. If the errant endometrial tissue is not fully removed, as it often is not, it will continue to bleed and cause problems. Many with endometriosis remain undiagnosed for years because of the stigma surrounding menstrual health and lack of knowledge among medical professionals. And as Abby talks about, having a diagnosis, doesn’t necessarily mean much.

Abby brings up something that many women with unexplained chronic pain, especially pelvic pain, are often told by doctors who have reached the limits of their knowledge: that the pain she is experiencing is some psychological manifestation of childhood sexual trauma. This same message dominates the lay literature about pelvic pain as well. An upcoming episode will feature part two of my conversation with Cyrena, my guest from episode 13. We’ll be talking about the link between physical stress and illness, and her research on inflammatory markers in adults who experienced early life stress. We talk about why blaming sick people for something that may or may not have happened to them a long time ago is unproductive, and doesn’t address patients’ current, physical needs. I believe Cyrena is defending her dissertation this week, so let’s all send her good PhD vibes.

Abby first realized something was wrong very suddenly while a sophomore at Sarah Lawrence college. With the help of scholarships and grants, she’d moved to the campus just north of New York City from Maine, having been emancipated from her parents at the age of 16. During what she has since dubbed The Worst Shower Ever, she had an acute onset of lower abdominal and pelvic pain, and spent the next few weeks in and out of the hospital. Her health quickly declined to the point she had to take a leave of absence from Sarah Lawrence, and was eventually forced to drop out and forfeit the aid that enabled her to rebuild her life at school.

You can hear her talk about this in her own words in today’s bonus episode, but early on, after her pain started and she’d returned to Maine, she’d had exploratory surgery which found an endometrioma at the junction of her left fallopian tube and ovary. That cyst was drained but not removed; because of its location, the doctor was concerned about preserving Abby’s fertility, and Abby experienced no improvement in her symptoms after surgery. The doctor who performed the procedure was not a specialist, and gave Abby little information more than a diagnosis of endometriosis. Over the next couple years, Abby went on to the revolving door of doctors and treatments that so many of us living with difficult to diagnose and/or treat chronic conditions are familiar with.

In this episode, we pick up Abby's story about 3 years after her experience with endometriosis first started. She was now working in the the records department of a hospital and spending her lunch breaks in the medical library, combing through gynecological textbooks, trying to learn about her pain and what could be done about it. That job was just the right fit for that time in her life, as it afforded her stability, good health insurance, and a short elevator ride to the emergency room if she needed it. At a certain point, she had learned enough to know when things really took a turn for the worse, and that she needed to really advocate for herself to get the medical attention she needed.

[Interview]

[outro]
And thank you for listening to In Sickness + In Health. Until next episode you can find us at insicknesspod.com and on social media @insicknesspod. If you can take a few moments to rate and review us on iTunes, it will help out the show.

And don’t forget to be excellent to yourselves and each other.