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March 9, 2019

It’s Endo Awareness Month

I’m going to put a disclaimer here that I’m not a doctor and this is just an awareness post. All of my knowledge on the things I’m about to talk about comes from my own layman’s research and medical treatments for my own body. If you feel that you are experiencing anything I talk about in this post, I STRONGLY urge you to go talk to your doctor and get treated professionally.

Hi Dreamers!

Today’s post is… heavy for me to write, but It’s super important to me so bare with me. As a lot of you know, yesterday was International Women’s Day and it just so happened that I had this post scheduled for today so it’s perfect. I’ve wanted to write this for awhile, but was afraid it would get some backlash or not a warn reception… but it’s really important. And it’s important for me to be honest here. So, I’m going to put in a trigger warning here for health, medical talk, the female reproductive system, mental health, and chronic illness.

So because March is Endometriosis Awareness Month let’s talk about Women’s health.

What is Endometriosis?

Endometriosis from a very basic explanation is when the female reproductive system starts producing a tissue very similar to the uterine lining outside of the uterus. It’s called endometrial tissue and is normally triggered by a period, but can be triggered by other things. There is very little known about what causes it other than possible hereditary factors. It can cause extremely painful periods in women, miscarriages, different types of cancer, pain with sex, and infertility, along with a multitude of other symptoms that just make life hard.

About 1 in 10 women in the world is diagnosed with endometriosis.

In can take on average up to 10 years from the onset of symptoms to be diagnosed with the disease.

Endometriosis requires a surgery to diagnose the disease.

A general lack of awareness by both women and health care providers, due to a “normalisation” of symptoms, results in a significant delay from when a woman first experiences symptoms until she eventually is diagnosed and treated.

http://endometriosis.org

There is currently no cure for endometriosis, but it can be treated.

My Experience With Endo

My who experience with women’s health starts early. I’ve talked about this before, but I want to do a more honest version. I have polycystic ovarian syndrome (PCOS) which, like endometriosis, causes a lot of health problems mentally and physically. In fact, a lot of the symptoms are very similar. I was diagnosed with PCOS when I was sixteen and back then it was an infertility sentence. Last summer, I had surgery for endometriosis that might have saved my life. Let me explain:

For three years I suspected I had endometriosis. I had a friend in dance who has it and we compared notes a lot. She has to get surgery every three years to remove her endometrial tissue because medication only slows down the production of her type of endometriosis, it doesn’t stop it.

Around my sophomore year of college, I started getting massive stomach pains in my right ovary. In October, I was rushed out of my creative writing class and into the ER one afternoon doubled over in pain so bad my roommate had to speak for me because I couldn’t breathe. They ran a CT scan told me it was stress pains and to go home.

(I’m planning on doing a full story about my battle with PCOS and health in general in September which is PCOS Awareness Month.)

January of my junior year I was in the ER again over winter break. Same pains, same screaming, same agony. This time they ran a CT scan and an ultrasound. I had a cyst show up on the CT scan and not the ultrasound. It burst between the two tests. One more cyst and five doctors later before a doctor finally listened to me saying something is wrong. I had suspected I had scar tissue or Endometriosis and she agreed with me and brought me in for surgery that was meant to diagnose endo. If they find tissue that looks like endometrial tissue they remove it and run tests. If they come back positive you’re diagnosed with endometriosis.

The Impact

I remember coming home from my consultation with my doctor curling into my mom and asking why I was broken. Why had it taken five doctors to get one who wanted to listen? Why didn’t my body work the way it was meant to?

My girlfriend sent me this in the months between my consultation and my surgery. Even though I don’t have endo what Halsey’s experience was like and how she talks about her feeling about her illness and her body were very similar to my own.

If I had been diagnosed with endometriosis I would have had a double diagnosis of endometriosis and PCOS. The issue is PCOS and endometriosis are opposite diseases with similar symptoms. PCOS causes you to not have a period so you go on meds to induce a period and endo is normally triggered by a period so you go on meds to stop your period. Mine would have been a weird, but not unheard of, case where both co-exist. Obviously harder to treat.

I was not diagnosed with endometriosis. What they did find was proof of my other theory: scar tissue. Due to having three cysts rupture on one ovary I had scar tissue trying to adhere my ovary to my bowel… yes that is as painful as it sounds.

Awareness

You can imagine that in the last seven years since my PCOS diagnosis that I’ve become a huge advocate for women’s health. Both diseases are incurable, under diagnosed, and cause a lot of women to feel like they aren’t being heard. I knew I had cysts bursting and causing scar tissue, call it female intuition, but I got diagnosed with everything under the sun before some one would listen to me. I eventually told them just to take it out, but I was told that because I was under forty and hadn’t had kids I would regret it. I’d rather not be in pain and missing half my life then have kids. Adoption exists.

In the wake of international women’s day when everyone is talking about the wage gap and #metoo and everything else under the sun (that I fully support!) I wanted to bring up that the NIH spent $7 on endometriosis research in 2018 (source). We need to do better then that when it comes to women’s health.


Some resources:

I’m starting a project called APHI, Association for Patients with Hormonal Imbalance. It’s in it’s early stages, but if you would like to help be a part of it please feel free to reach out to me here.


3 Comments on “It’s Endo Awareness Month

Isabelle @ BookwyrmBites
March 11, 2019 at 10:03 pm

women’s health is such an important yet societally overlooked topic. i’m so sorry that you’ve been through so much physical and emotional pain, and from my (admittedly limited) understanding the pain is chronic? or at least comes and goes? in any case, thank you so much for sharing your experiences, raising awareness and linking resources, and I wish you the best for your project ?

Reply
Brigid Downey
March 12, 2019 at 8:00 am

Yes, the pain is chronic, but it’s much better since my surgery

Reply
Body Talk | Brigid L Downey
March 24, 2019 at 10:20 pm

[…] that a lot of you come here for my book and travel talk, but I’ve wanted to talk more about my health journey because it’s very important to me. If that’s not your thing, that’s fine feel […]

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