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Endometriosis

Katherine, 22, lived with unbearable pelvic pain for nearly a year before she found out what it was.

The pain

I was diagnosed with dysmenorrhoea (severe period pain) when I was 17. It went away for a while, but the pains returned when I was in my final year at university. This time it wasn't just during my periods. If you imagine the worst period pain you have ever had, and multiply it by 100, you will have some idea of the agony I was in.

The bad diagnosis

In October 2002 I went to see a doctor as I was desperate to know what was causing my pain. I was told that I had wind and was given some painkillers. After four hours I was still in pain and I ended up in Cheltenham General Hospital. Over the next five days a string of doctors diagnosed me with all kinds of problems. They thought I had indigestion, then gall stones, then irritable bowel syndrome, then appendicitis and finally a trapped nerve in my abdomen. Over the next two months I went to see several doctors. A few of them were really cold and unsympathetic, and I was infuriated when one suggested that the pain was all in my head and gave me anti-depressants. I had good reason to be depressed, but I wasn't.

I was really fed up and my parents encouraged me to seek private help. It cost me quite a bit and involved me forking out £10 in taxi fares every time I went to the hospital. I went to see a gynaecologist (specialist in women's health) who made me feel very uncomfortable and never suggested I had endometriosis, but told me I had polycystic ovaries, which is associated with endometriosis and fairly common. 

Feeble remedies

Pain specialists recommended a number of solutions before they really knew what was wrong. I had all sorts of tests that resulted in acupuncture and injections, which were supposedly pain free. They actually hurt like hell and did little to lessen the pain. The specialists also gave me scans but none of them were showing the problem. I really hated the ridiculous diets they made me go on. I went on a low fat diet when they thought I had gallstones and I lost almost two stones. Everyone was worried about me because I was so thin. The second diet forced me to give up dairy products, caffeine and chocolate, which made me feel miserable. I was also told to detox by drinking some nasty prune syrup with water to clear my insides, and drink aloe vera. I was never told why any of these diets would make a difference and I didn't notice any change. Unfortunately, I was also encouraged to spend a fortune on calcium magnesium tablets, which were a complete waste of money. Finally I was advised to get a TENS machine which provided me with some long-awaited pain relief.   

Finally some results

I actually found out about endometriosis when I was chatting to some girl friends. They suggested that I should check some websites. I took their advice and was amazed how accurate the symptoms were to mine. I found a gynaecologist who was almost certain I had endometriosis in October 2003 and I had an operation booked within 10 days of meeting him. I was in so much agony that I thought I was going to die, it was pointed out to me that endometriosis isn't fatal, but I wasn't prepared to wait 21 weeks on an NHS waiting list. Instead I paid £2410 for private treatment. My parents and I were so fed up with misdiagnosis; we were willing to risk having a laparoscopy (the procedure that confirms endometriosis) with the hope that it would end my suffering. 

The future

I have now graduated from university to the surprise of my friends and pain specialists. I have never been one to give up and so with the help of assignment extensions I passed everything. On the health front, some days are bad, but some are good. I have been told my body needs at least three months to heal and so taking painkillers is part of my daily routine. I had a small amount of bleeding immediately after the operation and I have a scar on my navel but it's healing well and is now barely visible. I have also been taking the pill to avoid periods as they are still particularly painful and they interfere with the healing process. I am anxious about disclosing my endometriosis on job application forms, as I don't know how employers will react. Luckily, people have been sympathetic so far, especially women. I can't wait to know the final outcome of my operation and I still can't believe how little gynaecologists seem to know about my condition.

What is endometriosis?

  • Endometrial cells make up the lining of the uterus (womb) and they are shed monthly in the menstrual process (known as having periods). For some women these cells grow out of control and end up in the lower abdomen, the stomach, the fallopian tubes, the ovaries and the bladder.
  • Unlike the cells in the womb they have no way out of the body so they stay where they are and continue their cycle causing inflammation, internal bleeding and scarring.
  • Women with menstrual abnormalities, heavy bleeding or frequent periods, short cycles, early puberty, are more likely to get endometriosis.
  • The only way to remove the cells is through an operation. 
  • There are no official figures for the numbers of women who suffer from endometriosis. Some figures estimate that 15% of women in their reproductive years have the condition, but 10% is a more common guess. Nearly 90 million women worldwide has been proposed as a conservative figure. 

Interviewed by Helen Williams


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