PERSONAL STORY: PAM BARKER

I've had 'problem periods' since I was about 14/15yrs old. When I was seventeen I was told I had IBS. Over the years the problems increased and I visited my doctor many times and was diagnosed with many different things - urine infections the most common and I was even checked for Pelvic Inflammatory Disease on more than one occasion. After many years of pain the doctor finally suggested I have a laparoscopy and I was referred to a gynaecologist, this was in June 1998 and I was then 24.

After the laparoscopy I was told I had endometriosis. I was told the very basics and not much else. I had never heard of it. I did my own research and found out a lot of information from the Web. After a second visit to the gynaecologist it was suggested that I try a course of treatment - six months on Synarel (nasal spray form as I have a needle phobia). This proved to be quite successful - only while I took the medicine - as soon as I stopped the pain started to get bad again.

I was told at one point that one of the best cures is to get pregnant! This is certainly not something I am ready for and am not prepared to bring a child into the world on the say so of some ill informed doctor. At the time of being told this I was in the process of splitting up with my husband and that was certainly the last thing on my mind.

Last year I started to have increased problems - constipation, diarrhoea, severe back ache, my periods started to get erratic, bad pains on my left-hand side, not just at the time of my period but all the time, I felt ill all the time. The pain got so bad I went into hospital in November with suspected appendicitis, after seeing two consultants and finally a gynaecologist it was decided I didn't have anything wrong with my appendics and I was referred for an ultrasound scan. This showed I had a cyst on my left ovary.

I found this out two days before New Years Eve. I was supposed to have another scan in January, but the hospital messed up and my own doctor ended up having to chase both the hospital and my gynaecologist. By now I was getting severe pain, which was starting to keep me off work, and also had a permanent bladder inflammation. I finally had another scan at the beginning of April and was told a had a 5.3cm endometrioma (chocolate cyst) on my left ovary and my gynaecologist told me I had to have it removed as it was so big, he also told me it was quite likely that he would have to take my ovary too.

So on 4th May I had the op, I was told very little about it beforehand and was quite shocked to discover it was actually quite major surgery. I just wish the doctor had prepared me first. The cyst had ruined my ovary so that was removed, the cyst also ruptured during the op, so I was in a bit of a mess. The cyst had been sticking my organs together and that was what had been causing me a lot of the pain. I was told the endometriosis was extensive and it was also on my right ovary, the implication being that the right ovary would eventually go the same way. I was in hospital for five days.

It's now almost two weeks later and I'm still very sore and have to be off work for some time yet. I have to wait six to eight weeks before I can see my gynaecologist to look into any further treatment.

In the meantime I am now more than ever having to face up to the fact that having children may not be an option for me in the future. Also that I will probably be having further surgery and there's not very much I can do to stop it. At the moment I'm finding it difficult to stop crying.

I'm lucky I have a wonderful boyfriend and family who have been very supportive, but I'm glad I also have the opportunity to see all the support out there on the internet too, it's good to know I'm not the only one.

Pam Barker
Email Pam