Endometriosis Awareness Month – Maddy's story
I don’t think I’ve ever not had symptoms. I started looking for answers when I was about 17 and I went through four doctors who all told me my pain was normal. But it didn’t feel normal. None of my friends had pain like me – there were days where I couldn't get out of bed, couldn’t go to school, I’d bleed through my school dress, I was nauseous, I was on strong pain killers and still in pain – I just struggled to live my day-to-day life.
When I was 20, I found a doctor who said I don’t think you have Endo, but for peace of mind, let’s check it out. That was my first surgery and I was covered with it – my bowel, ovaries, urinary tract were all covered in endometrial tissue. The places where they found the endometriosis matched exactly where I had been getting pain and things started to make sense – I was getting constant UTIs, my period pain was obviously horrendous and I’d always had an irritable bowel and people kept diagnosing me with IBS. I’d had multiple colonoscopies and gastroscopies and nothing showed up. I had so many internal ultrasounds that I was shocked years later to find out thats not a normal procedure for people to experience on a regular basis.
I had been put on the pill when I was 16 because it was supposed to help reduce my period pain. When I was 23, I developed a small blood clot behind my eye and had to come off it for 18 months. During that time, my symptoms went absolutely wild, it was a disaster. That led me to my second surgery where the doctor removed more Endo spots and scarring. Things resolved themselves for a couple of months but the relief didn't last long.
I went back on the pill but I feel passionately that we shouldn't have to use a hormonal contraceptive as a means of dealing with pain. What’s more, my mum has a history of breast cancer which was hormone related and neither of us liked the idea of me being on the pill from that perspective. So in 2019 I came off it again, but by 2020, my symptoms were so overwhelming that I couldn’t function.
During that time I would have maybe one good week a month. My team at work got used to me walking around with a hot water bottle in my pants – I had one at work, one at home and actually ended up with a burn rash from having the heat so consistently on me. My anxiety was really bad – I’d go into deep spirals.
At this point I had an IUD put in which was amazing because it stopped my periods but I still had the pain. I’d call them phantom periods because I’d get all the symptoms but no bleeding. Around the middle of last year I went to a new doctor who did a swathe of scans. He diagnosed me not only with Endometriosis, but also with Adenomyosis which is when it gets into the muscle lining of the uterus.
The worst part is he says I probably had it from a young age, and had I been diagnosed early and had an IUD put in years ago, it would have really limited the spread. Unfortunately, you can’t have it surgically removed because it’s muscle, so now it’s a matter of managing the pain.
I’ve since had my third surgery and he has prescribed me Endep which is used to treat nerve pain. Because my body has to learn to expect excruciating period pain, it needs to unlearn this association which is what the Endep helps with. It’s only been four months, but my quality of life has improved greatly.
There are other things I am starting to explore. I’ve found acupuncture really helps. Exercising with a mix of cardio and strength and keeping a healthy lifestyle – all of those things help and have been shown in research to make a difference.
A had a (female) doctor once tell me, sometimes women have pain and that’s just our burden in life. I cannot stress enough how much I disagree with that. No one should have to put up with pain that makes their lives unliveable.