Had tried to keep this short & sweet but didn't manage it sorry!

- I'm 38
- Married to Shaun, our 15th wedding anniversary will be in September this year (he is my angel sent by God to help & support me through the nightmare of endometriosis
- Have1 dog - Kes who we adopted from Battersea almost 10 years ago when she was just 6 months - We have no kids endomeriosis took that away from us years ago, although everyone did keep saying miracles do happen, it would definitely take a miracle now as I had a hysterectomy December 2007 which I'm slowly recovering from.
- Now I know all about endometriosis I can trace symptoms back to when I was 15, it stopped me doing things (although not many things back then) from 16 when I was put on the pill.
- Came off the pill 3 years later & periods became a nightmare often leaving me in bed for 3 days each month.
- At 23 went back on Pill 3 months before wedding 7 months later had to come off them as they caused me menstrual migraines which would put me in bed for 3 days every month & my blood pressure went sky high, told never able to go on pill again & was on beta blockers for a year.
- At 24 I had to give up my job as I wasn't coping (despite the fact I'd been doing jobs like it for 4 years by then.) We decided I'd take a few weeks off & then get a part time job whilst we were trying for a baby (ttc- for short).
- On 25th birthday I had to come home from my part time job early because I felt sick (was start of a period) we had friends round dinner & I managed to get through it with the aid of some alcohol, I was ill & in pain all weekend & when not well enough to go in to do my 5 hours on Monday we decided I should go see my GP. GP wasn't there so saw locum who was concerned by where my pain was (had already lost appendix at 17) that it might be an etopic pregnancy as we were ttc'in at the time. So she sent me to the local hospital. The dates of things get a bit fuzzy from there for the next 6 months or so as I had 2, 3 day stays & ended up in A&E for pain relief on adverage every 2 weeks! I should add that my pain was no longer cyclical but daily & was very glad when one night the on call reg introduced me to coproxamol (a drug that is unfortunately no longer availible.)
- At one point I was told I had PID (Pelvic Inflamatory Disease) & because this has been noted I had 5 different courses of anti b's none of which worked because every single swab they had done had come back negative. I only found this out after one night in A&E when I explained to a very nice female reg that I had PID & therefore needed more anti b's, she went back through my notes & told me that every single test they did came back negative, it was then it was decided that we should look into my mums past medical history, not an easy thing as she died when I was 11, rather than go into all I will just add that she had an incredible & sad medical history but none of it lead to anything that was hereditory & could be effecting me.
- In the end after many trips to A&E & the GP I had my diagnostic lap, the registrar who was doing it & had 'looked after' me on my 2, three day stays told me before I went down for the lap that he wasn't expecting to find anything (ie; its all in your head). However he was proved wrong, & while I sat with my hubby in a sedated state from the anesthetic I was told that I had mild to moderate endometriosis & because some of it was on my bowels there was nothing they could do surgically so it was a case of trying the various medications that were available!
- Neither myself or hubby were happy with the poor info we had been given & hoped that we could find some more information on this rare disease(please note I no longer think that it is rare that was just what I was made to think by the doctor who did my op), so we went to the library hoping to find a book or maybe two that may have a paragraph or chapter on it if we were lucky. It turned out that in our local library in 1995 there were actually 3 different books solely dedicated to endometriosis so it was not as rare as we first thought! My hubby read one of them & I the other two & we both gleaned information from them that we still both use & refer to today.

To speed this bio up as it is far from the short thing I'd planned on writing here is the next 10+ years in a few sentences, I hope to come back one day soon & add more meat to them in to hope that reading my bio may help someone else in the future.

- All the medication apart from Zoladex part of the GnrH group of drugs made me so ill I could do nothing but lye on a sofa or bed & throw up & a reg at my local hospital kindly informed me that if I ever did get pregnant I spend my whole pregnancy like that (Nice hey!!!)
- My local hospital wouldn't pay for me to go on Zoladex (it was during the time of self funding etc etc) so my GP who had only joined our practice a couple of weeks before my diagnosis & read up on my notes & got it pushed forward, had a cousin who worked at Queen Charlottes & as no-one in the GP's practice had ever worked with Zoladex they weren't happy giving it to me without the hospital supervision (the local hospital had taken me of their books saying only to get reffered back if I wasn't pg in 18months times!) My GP was more livid about that than I was! Anyway she managed to get me reffered to Queen Charlottes & I can only say that the difference of seeing them was like going private (but without paying). I was put on a drugs trial for Zoladex & seen once a month when I had my injection & given a thorough check up.

I stayed with them for 6 years & had about 4 laps with them, (yes they could operate on the endo that wasn't on the bowel & when it became necessary they would operate on my bowel with the assistance of a bowel surgeon) so different treatment to what I had been given before. The first lap with laser surgery improved my pain greatly & so when it got bad again after 18 months without treatment & ttc we I had a second. There was improvement but nothing like the first time & whilst I'd not been on any treatment the endo had grown so fast that there was more of it when my gynae went in the 2nd time than when she had gone in the first time, so 2 months after the 2nd op as the pain was so bad & my quality of life was so poor we put ttc on hold & I went back on the Zoladex this time long term for 3 yrs, half way through my pain spiked & I had my 3rd surgery with laser which brought my pain back to a manageable level once again (the endo had grown back but a lot slower this time & although there was a lot there by normal standards there wasn't as much as the time before & there was a major bonus the endo on my bowel had shrivelled up & died off). However another lap with laser & a 3rd round of Zoladex & a mirena coil later things got to a stage where they only thing they could offer me was a hyst which my then gynae didn't feel would do the job & so after much searching on both our parts we decided I'd be reffered to the JR in Oxford who not only had an excellent team but also worked with a Professor from Belgium once every month or so & my first & second surgeries there were excision surgery with him, again there was small improvement in my pain after both surgeries more after the 1st one than the 2nd & we realised that at least half of the pain was down to nerve damage from the years of damage caused by the endometriosis & surgeries.

So in the end we decided after all else was exhausted that I would have a total hysterectomy there. I went into it knowing that its not a miracle cure & there was no guarantee that the pain would improve let alone go totally but I would not have to suffer the pain & embarassement of flooding every 3 weeks any longer. To date pain wise I'm in a little less than I was before the surgery & only time will tell the rest, but for me it had become time to take this measure & except how little or much it has to improve my life. I know it will be at least another 6 months before we can say how successful its been but both myself, my gynae & GP are optimistic that there will be further improvement. The end for now...