Endo stories

“It’s only now I look back and connect all the separate endometriosis symptoms, that I see it had a far bigger impact on my life than I ever realised.

“It stopped me doing physical and social activities, it made me miss school, college and then work.

“The endometriosis pain which remains most vivid in my memory is a searing, scraping agony, deep within my womb. It would radiate, causing me backaches, bouts of dizziness and even nausea. But I just thought it was normal period pain.

“It wasn’t until I was 35 that I had my ‘red flag’ moment. After three years of trying to get pregnant, the doctor suggested endometriosis as a possible cause of my infertility.

“We didn’t know for sure until I went for a laparoscopy. As I came round from the operation, the doctor said I had six months to try and conceive, after that time, the endometriosis would probably have grown back.

“Sadly, we didn’t manage to get pregnant in those six months and, two years later, we found ourselves on our third round of IVF. Thankfully, that final round worked. And nine months later, my amazing, feisty daughter was born.”

“When I was about 35, I kept getting endometriosis pain down my right side, from my hip to my ankle.

“Over time, the pain started to get worse to the point I was having trouble sleeping. Then it became so bad, I struggled to leave the house.

“As well as the pain was the bleeding. I would put the largest size tampon and a heavy-duty pad but, some days, I would go through them both in minutes.

“Luckily, during a routine smear test, I spoke to the nurse about my heavy bleeding. She thought it sounded like fibroids and told me to get a referral from my GP. I ended up having a laparoscopy. That’s when I found out I had endometriosis all around my sciatic nerve.

“That was all about 15 years ago now and, since then, I’ve gone through the menopause. Now, I can wear white trousers, I can wear skirts. I’ve got my life – without pain. My right side is still much weaker than my left and I am always trying to improve my strength. But I am so much better than I was.”

“I’ve had endometriosis symptoms for as long as I’ve had periods… and I started when I was nine.

“From really early on, my periods were so bad that I would shake in pain on the floor. I couldn’t go to school when I was like that.

“As I grew up, the pain became like a deep ache from my lower back to my knees. It felt like my bones were throbbing and I sometimes struggled to walk.

“I’d never sleep the night before my period came. I was so bloated it was too uncomfortable, and stabbing pains in my stomach would keep me awake as well.

“My ‘red flag moment’ happened when I was visiting my aunt in her hospice. I found out that she’d had uterus problems too. One of the last things she did was asking me to promise her I’d go to the doctors. I kept my promise.

“I’m really fortunate because I get private healthcare through my work, so I got a referral from my GP and, within a couple of weeks, I was seeing a gynaecologist. It’s the most I’ve ever felt listened to and understood. They were so kind and gentle.

“After that, everything happened really quickly. I managed to get a cancellation for a laparoscopy, and within 10 days, I had my diagnosis.

“My advice to you is to get familiar with the symptoms. Keep a note of dates and specifics and always ask questions. Don’t be afraid to be forthright. Don’t be embarrassed by any of this.”