Mady Morneault, Endometriosis Survivor, Author, and women's rights Activist talks to YourCycle about her Endometriosis (Endo) story and the extreme lengths that she went in order to be heard, believed and correctly diagnosed. 

Interviewer 

Hi, Mady, how's it going? Thanks for hopping on the call so early. It's so nice to meet you! I’ve been talking with the team about your endo story, and its such a common health issue, I think endometriosis affects one in 10 women. Before we jump into that side of things, I would love to hear a little bit about you and where you're from and where you’re living in the States.

Maddie:

Well, I was born and raised in Austin, Texas, so I've lived in Austin almost my whole life. I transferred to the University of Texas at Austin for a year but then I had to take medical leave in the last semester at UT because of my first surgery for Endometriosis; so don't ask me how I finished that semester when I had my surgery, but I did. 

After that, I had to take some time off and had to figure out what else was going on because that was the summer I was hospitalised. Now that I’ve had my second excision surgery, I've been returning to work and getting back into all of my hobbies. 

I've been very active throughout my illness with local grassroots activists, different groups within Austin and in Texas, especially with our collective rights. I've been doing a lot of work with Planned Parenthood and different grassroots organisations, like the Women's March, which I hosted. That was an insane experience. And so I've been able to keep myself pretty busy despite everything else going on.

Interviewer

That sounds amazing. There are so many of your life experiences that I'd love to talk to you about. Looking at some of your social media, it looks like you suffered from endo for about 12 years before you had your surgery?

Maddie:

Right. I started my period when I was 13 if you take that as the starting point, granted, I did have some symptoms before. At the age of four, I was diagnosed with Cyclic Vomiting Syndrome that has to do with migraines. The doctors just managed that with some medications here and there, they would run tests and then everything else would be fine. So I always had nausea, especially in the mornings, I threw up more than other kids and I would get sick a little bit more often. 

But when I started my period, I realised that my periods weren’t the same as my friends and I was having to go to the bathroom to change out my tampon or pad more frequently. By high school, if I was on my period, I was missing school. A lot of people would question why I was always missing school and they would just call me dramatic. I was twenty-three when I finally got my past expert excision surgery at theCenter for Endometriosis Care, so it was around a decade.

Interviewer 

Wow, so for a decade you struggled with doctors taking your symptoms seriously?

Maddie:

For sure. The younger I was, the more dismissed I was. Once I became more experienced with my body and confident at advocating for myself, I realised that something was wrong and that the doctors were missing something. I kept pushing because I shouldn't be feeling this bad and the doctors were saying I had food poisoning or stomach virus or the flu but I knew that I wouldn't be having these crazy episodes if it was just food poisoning. I know I wasn't getting food poisoning four times in a row.

I had a lot of doctors who didn't know what endometriosis was or misunderstood it, especially here in America. When doctors are educated in a certain way, they're not going to listen to a patient who brings their research because they're going to think they know everything. Unfortunately, with the current curriculum for our medical professionals, it's impossible to expect them to fully understand your disease, which then falls on the patient.

Interviewer

And given that endo affects about one in ten women, that's completely unacceptable that doctors still fail to understand it. This is comparable to them not understanding diabetes, which probably affects a similar portion of the population.

Maddie:

Right. I've had far more nurses recognise what endometriosis is than doctors. 

Interviewer

Was there a symptom that made people realise this is endometriosis?  A lot of your general tests came back as negative, right?

Maddie:

All of my MRIs came back completely clear, they would just say I had high inflammation as they couldn't see any blockage or tumour. That's because the endometrioma doesn't show up on the MRIs as it's embedded into my ovary, it's not just sitting on top asa cancerous epithelial ovarian tumor. 

Understanding the disease is required to know that most of it won’t be captured on an MRI. Typically, it won't show up in an MRI until it's too late. At stage 4, there is a bowel blockage or it's affecting your kidneys or you're starting to go into sepsis and that's how patients with endometriosis die. 

So I wouldn't say there is a certain symptom, it was about searching and finding the right doctor. In the summer I took leave from UT, I was hospitalised after my first surgery for endometriosis and put on medications but I just began to lose weight and the pain from my symptoms worsened. I got a colonoscopy as the doctors were concerned about the weight loss but it caused more pain and sickness. 

It took two weeks to stabilise me but still, the doctors didn’t have any concrete diagnosis besides generic nerve damage to the central nervous system because they didn’t know what was wrong. At that point, I knew I had to take it upon myself to reach out to other patients with Endometriosis and learn how they’ve improved. I was only able to find my doctor at the Centre for Endometriosis care online.

Interviewer 

That must have felt terrible.. You went through every normal avenue to be taken seriously.. Did you feel like you were just screaming at a wall?

Maddie:

I absolutely felt like I was screaming at a wall. You feel like you're screaming and repeating yourself saying the same thing to the doctors and the nurses but they're just staring back with a blank face. 

They say this isn’t their area of expertise but offer to help anyway in various ways or recommend other doctors. So they continue to mask the symptoms or find temporary solutions as opposed to finding the root cause of the problem, which was the endometriosis. 

In America, there’s no certification required to claim you’re an endometriosis specialist since it’s not considered a subspecialty in the medical field. I was referred to a gynaecologist at the hospital I was hospitalised for two weeks,initially, he was understanding but became dismissive of my pain when he couldn’t correctly diagnose the issues and the medical procedures were delayed and eventually cancelled. 

When I decided to seek out other help, a friend was able to connect me to her surgeon who in turn connected me to another person who is now my regular gynaecologist. 

The whole procedure was amazing, I expected a difficult initial consultation to examine my medical history but the gynaecologist walked in, looked at my pictures, said I had stage two Endo, needed to get it out right away.

It had nothing to do with my symptoms or anything like that. It had everything to do with the medical professional.

Interviewer

So when she was looking at those pictures, did she tell you specifically what it was that made her realise this is endo and this is how bad it is?

Maddie:

She was looking at the spots on the photos taken on my first laparoscopic surgery, which was an ablation that is ineffective in treating endo and had the potential to make it worse which I think is what happened to me. She saw the dark spots and white spots that I didn't realise were endo because endo looks very different in different stages and different areas. I told her about the ablation procedure but said it needed to be excised instead as the endo had grown back.

Interviewer

You said that you've had these problems since you were four years old. At what point do you wish that you had met this doctor?

Maddie:

That's an interesting question, I haven't been asked that before. I feel the right age would be 13 or 16. At 13, to be educated on what I should feel when I got my period and how to manage it would have helped set expectations and knowledge to care for any menstruator’s needs. 

It would have also been helpful when I started missing school at 16 when I began to pass out and was not able to eat lunch as I worried about throwing up in my next class. Being incorrectly told I had eating disorders contributed to a decline in my mental health. 

If I was told why I was feeling this way it would have made a big difference and I would be able to get the care I needed earlier.

Interviewer

Do you think that because you had to fight for so long to be heard, that contributed to you wanting to fight for other women with your activist work?

Maddie:

Yes, that's true. As far as the Women's March goes, I saw that they were hosting the Women’s March in Austin. I emailed the host and offered to speak about endo and reproductive health but also to help out in any way. She talked to me and we became best friends, that's how we ended up hosting the Women's March together. That was my first time organising a political event, I had attended many protest marches but never organised one. I had just received my first excision surgery and so I had a lot of fire to get the message of endometriosis out there and bring more awareness to help those who hadn’t heard of Endometriosis.