PERSONAL STORY: JANET RICHARDS

I had painful heavy periods for as long as I can remember. Things got worse so gradually that I didn't really notice how my life was becoming governed by pain. Then, in my mid twenties, the pain started with ovulation each month and continued for 2 weeks. I started to use up annual leave to get me through the bad days but my sickness record was getting worse...

I missed a period (unchartered territory!) and hoped I was pregnant. My GP said I wasn't, but sent me for a scan as I had terrible pain on the left side. I was given a Lap which showed adhesions and was told I had PID. The pain returned later that year. I had another lap and was told the adhesions were now so thick my left ovary wasn't visible.

I was put on the waiting list for a laparotomy to divide the adhesions. Following on from this operation the pain returned. I was now told nothing more could be done for my pain if I wanted to have a baby. My records were closed and I was now on my own. 18 months later I couldn't walk becuase the pain was so intense and went to casualty. I was given an ultrasound scan and told that I had large cysts consistant with endometriosis. When I told this to the consultant he told me I had misheard and that I didnt have endo.

At my follow up appointment I was told the only option was a hysterectomy. In a severely debilitated state I agreed to this. The hysterectomy lasted 4 hours. My whole pelvis was 'frozen' with adhesions. My bowel was perforated and I suffered heart failure and spent 5 days in the High Dependency Unit. Since the hyst 18 months ago I have been in daily pain. The chronic pain I had before the hyst returned last August.

I was told it was IBS.

I refused to accept this and started researching my symptoms. Everything was consistant with endo. I had to pay to see an endo specialist - my hospital refused- and he has now confirmed that he could actually feel the endo at the top of my vagina. But due to all the previous surgeries further treatment would now be hazardous. None of my previous operations treated my endo. I have lost the chance to have children and have suffered castration.

I am determined to try to prevent this happening to other women. I intend to be as vocal as I can about the failure of the NHS to diagnose and treat my disease. Watch this space......

Janet Richards