Claire Reynolds' story

I always knew that something wasn’t right. I started menstruating at 15 and had a terrible time. My periods were irregular but when I did have one I was crippled up in pain, vomiting and changing sanitary protection every thirty minutes. I often had time off school. My mum told me that she had suffered the same but doctors had told her pregnancy would probably resolve it. She said it wasn’t worth going to the doctor because I would be told the same.

I had my appendix removed at 16. The surgeon told me everything was normal, just squashed. I wondered why, but was too young to question it! Now it all makes sense; I was suffering with endometriosis.

At 17, I went to the doctor as I couldn’t take any more pain. I started taking the contraceptive pill to regulate my periods. I continued to go to my GP for painful periods and to try and find the right pill. I think I tried them all, until I found Ovran, which really suited me. Unfortunately this was later withdrawn from the market.

"The doctor noticed

something strange -

he said I had

two uteruses"

When I was 20, I was referred to hospital with painful periods and a high temperature. The doctor who examined me noticed something strange – he said I had a bio-curnurate uterus (two uteruses/wombs). I didn’t understand and was desperate for someone to explain or draw me a diagram.

I was sent to a genito-urinary clinic. I was so ashamed of this. I felt they thought I had a sexually transmitted disease. They thought I had pelvic inflammatory disease due to my temperature. I was strapped up in stirrups and numerous swabs were taken, all of which were negative. I was an inpatient on a gynae ward for two days and sent home with no diagnosis.

When I was 23, I had an emergency laparoscopy. The surgeon told me everything was normal, except my double uterus. About two months later, I went back to see my GP with painful periods. She said: “well you have endometriosis and this is documented on your discharge summary.” They had found a small amount of endometriosis by the pouch of douglas (between vagina and bowel). I was so cross, the surgeon did not tell me -  why? I still don’t know!

I was referred to an endometriosis specialist, and started a nine month course of Zoladex, which was tremendous. I was advised to start a diary-free diet which made a huge difference to my pain. I lost two and a half stone and began to have a normal life!

Two years later, I had another emergency laparoscopy. This time, even though I had a diagnosis, I was told I must have a stomach bug.

At my next visit to the endo clinic, the consultant gave me leaflets on Endometriosis UK. He said he would treat me as if I had endometriosis but thought my diagnosis and level of pain could be insignificant. He suggested Zoladex again, but unfortunately this didn’t help me.

In July 2004 I joined the Endometriosis UK. I have only rung the Helpline once when I was quite upset. The lady listened to me and I think we learnt from each other. In April 2005, I was sent a letter about a group in my area. I was very pleased and initially went to every meeting. I found it helpful to meet others like myself and compare notes. There have been some helpful talks and meetings. During this time, I began to feel better and manage my own condition.

I self-discharged from the endo clinic in 2007 and decided to come of the pill as I felt better. Unfortunately I ended a long-term relationship as my partner said he didn’t want children. I may have fertility issues due to the endo and double uterus, so I couldn’t risk being with somebody who might not want children. It was a tough decision!

From the end of 2007, I felt like the pain was returning and in June 2008 I had severe pains again (the same as always, like my insides being rung out). The doctor said that he would book an urgent ultrasound but that it would not show anything. However, it showed a cyst on my left ovary, and it was believed to be endometrial! Of course I didn’t want this, but I was relieved that the doctors would believe me. I was admitted to the hospital again for pain control. In July 2008, the left cyst was drained and it was discovered that I had severe endometriosis. The consultant removed the endometriosis from the left side but thought that it may be too dangerous for him to continue, as the endometriosis had wrapped itself around my bowel and right urethra (which explained my bowel and bladder symptoms). He scheduled my next operation alongside two other surgeons in case of any complications. I was given Triptorelin, a hormone injection, to dampen down my hormones. An endometriosis specialist nurse had just appointed to the hospital, and during my ill health she has been fantastic!

While in hospital, I read an article in Company magazine about endometriosis message boards and joined up! It was a huge source of support. I have made one friend so far through the boards and I hope that we will remain in contact. I have given her some advice based on my own experiences. 

I continued to suffer while waiting for my next operation. I had nausea, although I was never sick, and abdominal pain over my appendix scar. A bloated stomach meant I couldn’t wear any of my nice clothes and had to wear maternity style clothing. My GP was extremely supportive.

In September, I had my fourth laparoscopy. I was so relieved and woke up feeling a completely different person. I felt the same as when I was 13! The doctors came around and told me the operation was successful and all the endometriosis had been removed and my anatomy was now normal looking. I had another hormone injection and will continue to be reviewed.

I hope that after years of pain and suffering I will now be able to live a normal life again, have a long-term relationship and maybe have children! Everything would then seem worth it! I feel that I am a stronger person as a result of struggling with endometriosis and I can now stand up for what I believe in.

I feel the knowledge of endometriosis is increasing. Now, when I say endometriosis to someone, they can sometimes explain what it is, the symptoms and the life that is lead by a sufferer (interestingly this is usually men). The knowledge must have improved because of the work of Endometriosis UK. Thanks!