Endometriosis UK

Long term Zoladex use

Hello folks,

I was diagnosed at 21 with endo and went through all the usual treatments such as being on the pill without a break, coil, etc etc. None of them helped and the situation just got worse and worse and the GP just wasn't listening. I started having problems with chronic constipation and after a fight got referred for a lap where they then told me my bowel was glued to the back my womb and left ovary to the front of my womb. I also had a large patch of endo on my bladder.

My local hospital didn't have a clue so I asked to be referred out of county to a centre of excellence, UCLH in London. I had a lap and they said I'd need a bowel resection. I was put on Zoladex for 3-6 months while I waited for the surgery. I had the surgery and ended up with an ileostomy for 6 month while my bowel recovered. They tried taking me off the Zoladex but my body couldn't cope without it and I was symptomatic again very quickly so they put me on it for 12 months. After the surgery to reverse the iliostomy I developed a bowel obstruction and infection meaning a 10 day stay. I continued on the Zoladex and everything settled down, I was able to come off all pain meds, senna and laxido etc and my bowel habits returned to normal. They then tried one last time to take me off the Zoladex and unfortunately my body reacted badly, I was in agony within 6 weeks and my bowel just shut down. I was put back on the Zoladex and inject every 28 days, I have add back hormone and a dexa scan every 2 years. At my last scan I had lost 6% bone density in my lower spine and was put on adcal tablets.

I'm now 40 and have been on the Zoladex roughly 12 years. I haven't really had bad side effects except complete loss of labido, hair growth in the last couple of years (I mean a whisker or two) and the reduced bone density.

My question is, is anyone else out there who has been on Zoladex this long? I don't know if I'll ever be able to come off of it. Will I ever have a normal menopause? I don't like to be so dependant on this medication but trying to come off it scares the hell out of me as it completely changed my life. Before I was in agony, constantly on pain mess even as far as prescription pethadine and very depressed. Since going on it I have my life back, gained two degrees and a career in the NHS, I'm pain free except occasional joint pain (i am getting older though).

I don't know if there's been any developments in long term treatment since my surgery 7 years ago but if anyone has any advise I would appreciate it.



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