5 things I wish I’d known about endometriosis sooner
Sufferer Georgina, 25, opens up about the things she wishes she’d known about the painful condition before her diagnosis
Endometriosis, a condition where tissue that behaves like the lining of the womb is found outside the uterus, causes severe and debilitating period pain. It affects more than a million women in the UK, yet there is still so much confusion around its causes, symptoms and treatments.
Here, endometriosis sufferer Georgina, 25, opens up about the things she wishes she’d known about the condition before her diagnosis…
1. Endometriosis isn’t just normal period pain
We all know periods are painful, so when you have cramps and pain, you assume it’s normal. It’s hard to know when something’s properly wrong. But with endometriosis, the pain is different: sometimes I could barely get out of bed. The first time I had a really bad bout I was 17. When I woke up that morning, I could barely move. I was in so much pain I actually started vomiting because I had such extreme nausea from the pain.
This isn’t normal and perhaps it took me a while to realise this because I thought endometriosis was associated with older women. When I first read about it, I thought, there’s no way I can have that. People like Hilary Mantel have it. How can I? But endometriosis is actually a young person’s disease: it develops when you’re younger, but doctors don’t actually catch it until you’re older. Being aware of the difference between average period pain and something more serious is essential, as is women feeling confident enough to speak up when they think something is wrong.
2. It can take years for endometriosis to be diagnosed and treated
When my periods started getting progressively more painful, it got so bad, which made me realise I needed to go and see my GP. He prescribed the Pill and some painkillers, which helped for a while.
But when I was 20, I started to bleed in between periods, even though I was taking the Pill. I went back to the doctor and was referred for an ultrasound scan of my uterus. The scan came back inconclusive and I was told I’d have to wait three months for another one. When I finally saw the second gynaecologist, he found the problem. At first, he said it didn’t look too bad but as he investigated more, he discovered that both my ovaries were stuck to my bowel wall because of a mass of endometriosis tissue. That’s what was causing all the pain.
I was referred for a laparoscopy – keyhole surgery where endometriosis is destroyed using heat. Before they could do the surgery, I had to take medication that would put me in a false menopause, which would help shrink some of the endometriosis down hormonally. I had a lot of hot flushes and my sleeping pattern was affected, but it did stop the bleeding which was great.
Even though my endometriosis was severe, the surgery was successful. My surgeon showed me before and after pictures and the difference is incredible. I was lucky though: the average time to be diagnosed with endometriosis is 7 years, which is shocking, especially considering over 1.5 million women in the UK suffer with the condition.
Since my surgery I’ve been largely symptom free. I do have painful periods now and then, but I take the pill and maintain a really close relationship with my GP so we can keep an eye on any issues and deal with them before they get serious again. There’s a chance it could come back, but I try to manage it as much as possible.
3. Endometriosis doesn’t mean you can’t have children
When I was given my diagnosis, I freaked out with worry that I might not be able to have kids. It’s easy to find a lot of articles on the Internet about how endometriosis affects your fertility. But the good news is I should still be able to have children. It’s only when endometriosis doesn’t get treated that it can cause infertility. Worrying I wasn’t going to be able to have kids was really painful for me so it was a real relief to discover that having endometrosis doesn’t mean kids are off the table.
4. Endometriosis can have a big impact on your working life
I didn’t feel I could take time off work when my periods were really painful, so working when I was feeling awful was tough. And when my condition was being investigated, I’d have to leave early to go to hospital appointments, which I always felt guilty about. At the time I was doing a physically demanding job working with children, and it wasn’t a role where I could take time off easily. It’s not something you can really talk about in the workplace as it feels very personal especially around male colleagues. I felt awkward explaining what was wrong.
When I went back to study for a master’s degree, I had to take time out for my operation. After my surgery, my concentration was affected for a few weeks and I didn’t get as high marks as I felt I could have done. I tried to keep going as much as I could because I felt embarrassed about taking time off for my reproductive health, which just led to stress. Which leads me to my next point…
5. Women need to be able to talk about their periods
I think Lena Dunham was really brave to come forward recently and speak publicly about the effect her endometriosis was having on her work. For her to say “It’s really bad at the moment. I need to look after myself and I need to look after my body”, it shows other women who experience this pain that they don’t need to pretend everything’s fine and just get on with life. It’s helpful to know you’re not alone, and it’s powerful for it be talked about it by a celebrity.
A survey by Endometriosis UK found that women and young girls wait an average of two years before consulting their GP about difficult periods. I don’t think young women are as aware of the condition as they could be, but I hope this will change. We need to give women the confidence to say “I think something’s wrong. Can we look into this?”