Jennie's Story

Ever since I started having periods I was always in a lot of pain, but I didn't know any different; I thought this was how everybody was. I eventually went to my GP who gave me painkillers and arranged a dilation and curettage (D&C)* of all things! Obviously this did not have any effect. I didn’t bother going back, and over the next ten years my symptoms were kind of manageable on the Pill, then I went onto the depo provera contraceptive, which eliminated it all. However, I was forced to come off this due to the side effects, and this was when the real problems began. I am not the kind of person to take time off because of a bad period, especially when I worked on a gynae ward! I did not want one of my colleagues to investigate me, but eventually the pain got the better of me. I would be doubled over and could hardly walk some days as the pain was so bad in my abdomen, legs and back. Intercourse was virtually impossible. I was newly married at this time too.

I saw an endometriosis specialist in our hospital, and he diagnosed stage 5 endometriosis. I subsequently had laparoscopic ablation, which in order to not have to perform an open procedure, took nearly four hours to do, and I ended up with a uterine perforation. Sadly this treatment had no lasting effect. I spent six months on prostap, which relieved my endo symptoms but the menopausal symptoms were terrible. I took arimidex, which I had a really tough time on, but it still came back with a vengeance.

I started having a lot of bowel problems at this stage, and was referred to a bowel surgeon. A colonoscopy proved that I had endometriosis in the bowel. The only hope of any relief would be surgery to remove this area of bowel. I was warned of the dangers of a colostomy and was marked up for it prior to the operation. This was an emotional time as the last thing I wanted but I couldn't live with the pain. I had a left hemicolectomy, and luckily did not need a colostomy, but I have a nice big scar on my tummy (which I think used to be one of my best features!). For the last two years things have been great, but late last year despite having a Mirena coil, I started bleeding every day. I was put on norethisterone which stopped it, but as soon as I stop taking it, it starts again. I am currently trying a two month period off of the norethisterone and only one week into this it is hell. I can't believe that for all my surgery I am still suffering. I have no children yet and am now thinking that this will not happen.

To top it all off, in November 2007 (the year of my biggest operation) I was diagnosed with MS. The neurologist said that the symptoms usually start from a stress trigger that he thought was probably the surgery! Oh well happy days! At least none of this is life threatening, although it is life altering in so many ways.  At least in my job I can offer help and support to others in a similar position. The endometriosis nurse at our hospital along with my consultant is also setting up a support group in our area soon which I hope to help her with.

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*D&C refers to the widening/opening of the cervix and surgical removal of part of the lining of the womb and/or contents of the womb by scraping and scooping.