Jodie's Story

I always had problematic periods. I started on the contraceptive pill in my early teens, alongside mefanemic acid, to help me with the monthly bleeding and associated problems. Due to increasingly irregular and heavy periods, I started the contraceptive injection at the age of 16. This offered temporary relief, mainly because my periods stopped entirely, but by the age of 18 I was experiencing abdominal pain in the absence of periods. I moved away from home at the age of 20 to become a student nurse. I was a frequent visitor to the doctor with pain. At first I saw male GPs who were insistent that I had IBS, but on one visit I saw a female doctor and collapsed in the surgery through pain. She admited me to hospital and I was diagnosed with pelvic inflammatory disease. This soon happened again and I was sent for a laparoscopy.

In my first laparoscopy I was diagnosed with polycystic ovaries and minimal endometriosis. Six months later I had another laparoscopy for treatment, but by then the endometriosis had substantially grown. When I woke from surgery I found that I had been given Zoladex for the first time, and this continued for a long time. This was followed by the contraceptive injection, and then prostap, and although the symptoms were alot better, I was never pain free. Over the next few years I had three more laparoscopies with numerous surgical intereventions and repeated treatments with Prostap, Zoladex and other GnRH analogues, This was in addition to painkillers of increasing strength.

During this time I had seen both my relationships and work life suffer as a result of the condition. I eventually qualified as a nurse after numerous breaks from training as a result of surgery, and have worked for the NHS for the last five years. Although my immediate employers have been great, HR have often been on my case for my absence levels. I met with them and gave them information about the condition, which they thanked me for, but it hasnt resulted in any greater sympathy. With endometriosis being invisible it is hard to elicit understanding from others who often think it cant be anything worse than normal period problems that every woman gets.I lost one relationship partly because of my endometriosis. My ex had very little sympathy for the condition. He felt that the best way to deal with it was to try for a baby, which we did to no success, and he eventually cheated on me.

I met my husband at work and we were friends first. He knew all about the endometriosis and was honest that he did have to question whether he could live without the possibility of biological children before we got together. Luckily he decided that I was worth it; he has been fantastic, especially with the lack of sex, which has diminished over the years as the pain has got worse.With his support, at the beginning of this year we sought a referral to an endometriosis specialist at Birmingham women’s hospital, after my own consultant’s admission that he didnt know what else to offer me.

After a lot of discussion with my husband, family and new consultant, it was decided that a hysterectomy was the only option forward. My consultant was reluctant due to my age, and the fact that we dont have children, and suggested so many things that had never been offered to me before. I wish that these options had been offered to me eight years previously, but by now I had had enough. I felt strongly that endometriosis was ruling my life. It affected my work, my relationships, my social life and my education (I had started another degree while working part-time). I was fed up of thinking about it!

On the 22nd September 2009, I had a full hysterectomy. I feel that it is the best decision of my life. I can finally look forward to graduating next year, travelling and enjoying my life with my amazing friends, family and husband, who have supported me all the way. Many have said that I am too young at 29 to have had this operation, but I feel strongly that it was pointless holding on to an organ that didnt work and bought nothing to my life except from pain and misery. I feel now that I can have quality of life, and until we are ready to look at adoption which we are both keen on, my husband and I are looking forward to our lives together with our rescue dog Jack who is more than enough for us!

My message to others is to be strong, to fight for what you want, and to obtain referrals to specialists. I was lucky in recieving a diagnosis early on, but I genuinely feel that If I had seen a specialist nine years ago, I would not have ended up having radical surgery, which I don’t regret, but would obviously rather have avoided.

>> Back to personal stories