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My Endo Story

My Endo Story
International Patient Conference 2021
The Path Towards A Cure: Connecting Patients with Science

Dearne Richards:
Hi, my name's Dearne Richards and I live in Sydney, Australia. I'm 36 years old, and I have stage four endometriosis as well as adenomyosis. So a brief history of my experience with the disease. So I was 29 when I was diagnosed with endometriosis and I first started showing symptoms when I was 16, when I got my period. So from the onset of symptoms to diagnosis was 14 years roughly. I've had two surgeries since I was diagnosed. So from 29 to 36, I've had two surgeries. Three, if you count the reversal of the ileostomy bag. So my first surgery was, I would say, a walk in the park compared to the second one, although at the time it felt massive to me. It was really exploratory to diagnose that I actually had the disease, even though we were confident going into it that I did have it based on a dye trans vaginal ultrasound and my symptom history.

Dearne Richards:
But yeah, so that was just to go in, have a look, see how bad it was. Stage four was confirmed. I had a cleanup. The goal of the surgery was to relieve pain, which it did and restore anatomy and optimize my fertility. So those were the goals. And I think that was a two hour surgery or something like that. I had two nights in hospital and back home to recover. So that was in 2016, and then in 2018, after having visited a fertility specialist, because I had been trying to fall pregnant for a year without success, he referred me to an endometriosis excision specialist just to check how it was going before we started IVF. So I went to see him and he again sent me off for a dye trans vaginal ultrasound, and that came back suggesting that I had severe disease. And then he sent me to a colorectal surgeon because of the noted bowel involvement from the last surgery, which was left from that first surgery.

Dearne Richards:
So I went and had a colonoscopy and they found that I had a nodule and a lot of scarring in my rectum. So he joined in on the surgery, and I had that on the 7th of December 2018, and that was a seven hour surgery. I was in ICU for two days and then on the ward for nine days after that, or something like that. It was a big surgery. I had an 11-centimeter endometrioma cyst on my left ovary. So that was dissected and removed. My left fallopian tube was excised because of its involvement with the endometriosis. It was too damaged, so that was removed. I was able to keep my ovary, although I don't know how well it functions after so much prodding and interference. But it's there. And all the other things that you would expect from someone with stage four endometriosis, pouch of Douglas obliterated, yada yada, yada. But importantly, I had to have the bowel resection.

Dearne Richards:
So it was low interior bowel resection, and there were two quite large nodules in there and a lot of scarring in my rectum. So most of that was taken as well. And 15 centimeters of my large bowel was removed. So I think I've got about two centimeters left of my rectum and I, because of the severity of it and the work that they needed to do on the bowel, I did end up having to have a temporary ileostomy stoma, diverting pouch ileostomy. So I woke up with the bag and I was not happy about that. I did not think that, that was going to be needed. So I was quite shocked, it was quite traumatic to wake up with the bag and having been under for seven hours and in ICU. But anyway, that's what had to happen, so that's what happened. And then I had the reversal of the ileostomy four months later in April of 2019.

Dearne Richards:
So that's my experience so far with endometriosis. I have been told I'll need a hysterectomy because of the adenomyosis, and I'm fine with that after I've had my family. I'll be keeping my ovaries though. And probably, well, it's certain that I'll have to have further surgeries. My disease seems to be quite aggressive in nature, so that's unfortunate, but yes, that's where we're at, at the moment. It's a wait and see, watch and see what happens. I did go on to do IVF last year, we did two rounds and we fell pregnant on the second round, which is amazing. So I'm 27 weeks pregnant now. So yeah, that's where I'm at. So definitely more surgeries are in my future. Hysterectomy is in my future. So it'd be great if we could find a cure.

Dearne Richards:
The symptoms that I experienced throughout my life have been dysmenorrhea to the point where I vomit and have passed out before from the pain. Usually, it was the first two days of my period, and my periods went for nine days. Dysmenorrhea was another symptom, another big one that, again, I would vomit from the pain and need to put ice packs directly on my skin to relieve that pain. Sorry, I've got a bit of pregnancy reflux. And the last symptom that I had didn't appear until very late in the piece. So I think it was around 2017. So it was about a year before I had my big surgery that I started getting bleeding from my rectum when I had my period. So that was obviously a sign that the endo had moved into my bowel, but at the time I knew that it wasn't good, but I had no other symptoms of bowel endometriosis. I had no constipation or diarrhea. I had no pain when I went to the bathroom, have no bloating or soreness.

Dearne Richards:
So yeah, it was a bit of a shock actually that I needed to have such extensive surgery on my bowel, but that's what happened. So what worked and what didn't work for me in terms of pain management, surgery was the best pain reliever for me. Ice packs for the dysmenorrhea. NSAIDs for every month that I would get my period. And I'd have Nurofen every month. And dietary changes for me, so I removed gluten and dairy from my diet, and that seemed to help the monthly pain. The pain was still there, it just reduced it a little bit. But the thing that helped the most was surgery. In regards to the dysmenorrhea, I still have that pain, although I wouldn't call it pain anymore, I'd call it more discomfort, but that is not because the surgery didn't work for it, but because I have pelvic floor myalgia as a result of my endo, the adhesions, the surgery, whatever.

Dearne Richards:
So I work with a pelvic physio on that, and that has helped, but the dysmenorrhea got drastically reduced once I had all of that bowel surgery done and had recovered from that. Yeah, and then the thing that worked to treat my endo was surgery. That's it. Maybe my dietary changes helped with reducing inflammation and the symptoms, but in terms of treating the disease, obviously, that's the surgery. So what do I wish people knew about endometriosis, other than having an awareness of it and being educated like people are in asthma or diabetes or obesity, people have a general understanding of those diseases or conditions, it would be great if people have a general understanding of endometriosis. But, for me, I think just having people understand that it is much more than just period pain, once a month, you get bad pain where you have to take Panadol. Understanding that it's a multifaceted disease and it affects all aspects of a woman's life. It's not just painful periods. It's so much more than that.

Dearne Richards:
It affects your relationships. It affects your financial life. It affects your mental health. It affects you physically. And it affects your career and your career choices. When I was younger, having to have so much time off work, I'm sure people had an opinion of me that wasn't actually correct. And that's because I didn't know I had it, they didn't know I had it, and the assumption is that person doesn't want to come to work. They're lazy, whatever. So there's those things as well. You've got to change your life to fit around this disease. What type of work can I do? Physically, what can I do? How many hours can I work? I'm lucky that it doesn't affect me so I can have a normal job and do normal hours. But I know there are so many women that can't. They have to work part-time or they can't work at all. It's disabling.

Dearne Richards:
So just people knowing that it's much more than just, "Oh yeah, you get a painful period once a month," would be fantastic. So that's the main thing I wish people knew about endometriosis. So hopefully I haven't gone over time again. I've recorded this so many times. Thanks for listening to my testimony and have a great conference. Bye.