Sophie's story

An image of a woman in a cafe on a personal story about endometriosis

Sophie* is a GP

I think my endometriosis journey started when my periods began at the age of 13. My periods were really heavy and painful, so my GP put me on the contraceptive pill to try and help control things. At the time I didn’t know what was and wasn’t normal in terms of period pain, so I just put up with it throughout my teenage years.

When I was 23 and still suffering, I realised something wasn’t right – every month my period got more and more painful and would completely wipe me out. I went to see a gynaecologist and had a laparoscopy, which helped to diagnose me with endometriosis. I had laser treatment to remove some of the endometriosis and was given hormone injections to help stop the endometriosis from growing. However, these injections then put me into a premature menopause.

The effects of treatment

I was 23, studying at university to become a doctor, having to have a big painful injection in my stomach each month, all whilst dealing with the symptoms of menopause. For me, these symptoms were hot flushes, feeling achy, low mood, dry, spotty skin and constant tiredness. So although I no longer had heavy periods and bleeding, I was still struggling with menopause symptoms. I also still found sex really uncomfortable, which is common with endometriosis. And as someone in their twenties in a relationship, this really affected how I felt about myself.

I didn’t speak to friends about what I was going through, so I felt quite isolated at this time. Because people can’t see what you’re going through, and some symptoms can be embarrassing to talk about, I’d just put my head down and get on with things. I would feel quite alone.

After my course of hormone injections I went back on the contraceptive pill, but my periods then got really bad and painful again. I was then given tablets which put me back into a premature menopause for four months to stop the endometriosis from growing. I was then put back on the contraceptive pill again. At this point I was working as a junior doctor and the contraceptive pill I was taking caused me to get very bad acne and gain some weight. This affected my self-esteem at a time when I was already feeling low.

A year later I wasn’t feeling any better, so I had another laparoscopy and laser surgery to remove some more endometriosis. I was then given a hormone nasal spray to put me back into premature menopause. This was again to stop the endometriosis from growing, but it caused me to experience all the same menopause symptoms I’d already been through twice before.

The impact on my life

In my mid-twenties I was working 12-hour days as a full-time GP and my life consisted of just work and bed. I didn’t really have a social life; I wasn’t sleeping well as I was in pain throughout the whole month rather than just when I was on my period. I just felt really low and fatigued all the time. My partner had to take on more and more roles, doing all the food shopping and jobs around the house. He essentially did everything just to enable me to have enough energy to go to work.

Having children

Unsure of how my fertility may have been affected by my endometriosis, my partner and I really felt the pressure to have children as soon as we could. We felt like the decision was taken out of our hands as we didn’t want to risk waiting until it was too late. We felt that we just had to get on with it. I was lucky and got pregnant straight away, and after the birth of my first child my symptoms calmed down a lot. However, after my second child was born a few years later, they just got worse and worse again. Having to work part-time whilst looking after two children under the age of three and feeling horrendous all the time was very hard.

I had another laparoscopy at this point, which showed I had a huge ovarian cyst. I had surgery to remove the cyst but ended up having the whole ovary removed as it couldn’t be separated from the cyst. I then had the coil (intrauterine system – IUS) fitted to help with my endometriosis symptoms, but it just didn’t work for me. A scan showed that the coil wasn’t in place properly, so I had to have it removed and another inserted but that didn’t work either.

Deciding to have a hysterectomy

Things got progressively worse over the following year to the point where, at the age of 35, I ended up having a hysterectomy and my other ovary removed. At this point, I’d also developed adenomyosis, which is when endometriosis grows within the uterine wall. Having a hysterectomy and both my ovaries removed then meant I plunged straight into premature menopause. I don’t feel I was given enough information by my gynaecologist at the time and I wasn’t given any advice regarding the possible need for testosterone therapy too. I was given HRT to help manage the menopause symptoms, but I really struggled with the side-effects of the first kind of HRT I took. I also had complications from my hysterectomy where things hadn’t healed properly inside. It took me a good year to recover from my surgery.

Finding what works for me

It’s been 11 years since then and I’ve since found that using oestrogen and testosterone works for me. It’s still a journey as things need tweaking occasionally. But now that I’m at the age where I’d expect to start going through the menopause, I feel like I have a good understanding of what to expect. And I don’t feel as alone.

Although my experience of endometriosis meant I had to go through some very hard times, as a GP I feel it’s made me far more empathetic with my patients. I always share my experience with my patients that also have endometriosis or a premature menopause to help show them that they’re not alone. I can say to them, ‘I know exactly what you’ve been suffering with’ and know to bring things up that they may not want to bring up themselves. I’d like to think that I’ve never missed a patient with endometriosis. It’s always been something I’ve thought of straight away when faced with a patient dealing with those symptoms.

*Not her real name

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