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Real Voices: Living with endometriosis

Marion began to suffer from symptoms of endometriosis in her early teens. However, she wasn’t diagnosed until much later in life. In this week’s Real Voices, she describes the daily pain of the condition, and the distressing lack of research and awareness surrounding it.

I started getting symptoms before I even got my first period. I must have been about fourteen, and I was experiencing severe pain and cramps highly regularly. My mum was cataloguing my symptoms, and observed that I was experiencing this severe pain every 28-30 days, yet I hadn’t actually started bleeding. She took me to a gynaecologist who told us to keep monitoring it and that hopefully I would begin menstruating soon. Sure enough, about six months later I got my first period. From the start, it was absolutely horrendous. I was getting two periods a week, every week. I would start my period on a Monday, it would finish up by about Wednesday, and then another period would start on the Thursday or Friday and last over the weekend. Looking back now, I recognise that pain as what we refer to in our support group as “shooty bum pain”. It feels like you’ve got a lightning bolt of pain shooting between your legs, it’s excruciating. We went back to the GP and I was put on the contraceptive pill. They didn’t investigate any further about what could be causing my symptoms.

Throughout the next thirty years, I was put on a series of contraceptives such as the coil, the pill, and the injection. I was diagnosed with polycystic ovary syndrome at the age of twenty-seven. There were very obvious cysts that they could see on an ultrasound, but despite going to the GP a huge number of times since I was fifteen with problem periods, I couldn’t get any further help. They just kept putting me on different contraceptives. It got to the point where I didn’t want any more hormonal contraception, because they gave me mood swings, so I came off them. One morning in 2018 I was lying in bed talking to my husband when I had a sudden horrendous pain in my right side, to the point where it made me vomit. I went to my GP, who sent me to Aberdeen Royal Infirmary to get scans done. We sat there all day with nobody having any time to see us. I eventually managed to get a scan a few weeks later. I was thinking that it was another cyst, but the scan showed nothing. I basically spent another year going back and forth to the GP, and being put on another series of contraceptive pills which had awful side-effects. I was sent to gynaecology in November 2019, and that was the first time that anyone suggested it could be endometriosis. I would have to have a laparoscopy to diagnose it properly.

Covid hit, so my laparoscopy was delayed. My husband has private insurance through his work and during the pandemic the policy changed to include pre-existing conditions. My symptoms were getting progressively worse, and I wasn’t coping with the pain at all. My husband suggested we go private, but I wanted to hold out to see what the NHS said. I was then offered a surgery at Perth Royal Infirmary, which is over an hour away. It wasn’t going to be the exact surgery I wanted, and it wouldn’t be done by a specialist. My husband wasn’t happy with this, so advised me to go to a private gynaecologist. I did, and I got the surgery I wanted plus the excision in December 2021. It revealed that I have Stage 3-4 endometriosis, and the doctor said that she could see lots of very old endometriosis in the cavity so I had clearly been suffering for many years, possibly from the time when I was a teenager and became reproductively active. My right ovary was fused with endometrioma into my bowel, and my left ovary was fused as well.

I began treatment, which was absolutely life-changing. Unfortunately the pain has returned now, and I’m in medical menopause, which has its own set of challenges but it’s still making a difference. I’m alright at the moment, and I’m lucky to be getting along with my HRT (hormone replacement therapy) which isn’t the case for all women going through menopause. A lot of women suffer terribly with night sweats and brain fog during HRT, but I am coping okay. However, when the pain does come, I have to take codeine (an incredibly strong painkiller) that pretty much knocks me out, and means that I can’t do anything.

I found a support group, the Dundee branch of Endometriosis UK. Those girls have honestly kept me sane, I cannot tell you how valuable the group has been. I’ve been able to ask them for advice on what TENS machine to get (transcutaneous electrical nerve stimulation, a method of pain relief involving the use of a mild electrical current). I’ve also discovered through the group advice that drinking peppermint tea can relieve pain for anybody with endometriosis. It’s also just great to be able to talk to women who know exactly what you’re going through. As supportive as my family are, they don’t understand what I’m experiencing. Conditions like this can be incredibly isolating, which was only made worse during lockdown, and having those girls there was such a great source of support. I now moderate the Dundee group, and I run the Grampian group. We are now able to meet up in person, and some of the women I met through the group have become my close friends.

I have a degree in medical science. I worked in a hospital lab for fifteen years, and I regularly tested women’s blood samples for hormone levels. Incredibly, I had never heard much about endometriosis until the NHS gynaecologist mentioned it to me. At no point was I given a leaflet on endometriosis, and I was not told much information about the laparoscopy that I needed. I had to research it for myself, and even now when I tell people that I have it, they don’t know what I’m talking about. It affects one in ten women, and there’s just not enough research into it or information out there.

If there’s anyone reading this who thinks they may have endometriosis, please talk to your GP. I would also urge women to find their local support group, as Endometriosis UK have groups across the country. We’re here for you, and even though we’re not medically trained, we can lend an ear and listen. Endometriosis UK are invaluable but they can only do so much. I just wish that women’s health issues were taken more seriously by the government, and that there was more research and awareness into these problems. It’s not just a bad period.