Has anyone had stiff painful joints then a hysto and been ok after op? Please help as due the big op in 6 weeks and not sure whether to go.

[Margo45]

Hi, I've had 3 lots of zolodex treatments and suffered v badly with stiff and painful joints, I'm due a hysto in 6 weeks at Addenbrooks and I'm so frightened as I keep hearing awful things about Livial hrt which is what they are going to give me. I wonder if anyone on here has had the same op and the same problems on zolodex and found the op has been a success (incl being on Livial). I was also given mini pill which made me feel dreadful, suicidal actually. I was given eastradot whilst on first lot of zolodex which helped with the joint pain but gave me terrible headaches, and insomnia. Really don't know whether to have op or not. Please help. X

[cupcakegirl]

Hi Margo

I take it they're also removing your ovaries if they plan to give you HRT?

If so, it's very likely that the symptoms you had on zoladex will be similar to what you'll get after a hyst and bilateral oopherectomy (removal of both ovaries). HRT may help with these and you may need to try a few to see what works for you.

However, a hyst is sadly not a cure for endo - quite a lot of ladies who have a hyst find their endo returns afterwards. No-one is really sure why - for some women, the endo seems to return when they start HRT. For others, it returns even if they don't take HRT. This means the endo is much harder to treat, or even to get doctors to believe you. The hyst can cause lots of adhesions which also cause pain. I know of some women who are much worse off after a hyst and theres little that can be done to help them.

There are of course some ladies who improve after a hyst. Your best bet is to ensure your surgeon removes every trace of visible endo (although of course there is likely to be endo that is not visible) and take the lowest dose of HRT possible. If you're close to menopause age, speak to your gynae to see if you have to take HRT since it may increase the chance of your endo returning. Having said that, the HRT will protect you from problems like osteoporosis so you have to weigh up all the pros and cons.

Have you tried every treatment possible, and tried excision surgery with an endo specialist? If all your treatment has been with a local hospital gynae who isn't an endo specialist, you may find that there's a lot more an endo specialist can do for you.

Obviously endo is outside the womb so removing it won't improve things unless you have adenomyosis. Removing the ovaries should help since its the oestrogen that feeds the endo, but adding some oestrogen back in from the HRT could trigger it. That's the theory anyway but there are women who've had all traces of endo removed along with their ovaries and it's still come back even without HRT. No- one understands how or why this happens.

I don't know your medical history or the extent of your endo and what treatments you've tried in the past. I know you've had three courses of zoladex and I wonder if your consultant might agree to you going on this longterm with HRT instead. There's little research into longterm use although I had it for two years and I know others who've been on it for longer. It should produce the same effects as your surgery but most importantly it's reversible. I can't tell you what the risks are in terms of longterm use compared to the risk of a hyst and ovary removal but it may be an alternative, especially if you're close to menopause age already.

I really feel for you as its an incredibly difficult decision. I know now that my severe pain is caused by nerve problems more than the endo so surgery wouldn't really help me. I've run out of medical and surgical options. Even before I knew this, I would never have had a hyst because I know too many women who are much worse off afterwards. There are probably a large number of women who feel much better afterwards but we're unlikely to hear much from them as they no longer need help from others.

I think you should try to speak to as many post hyst ladies as you can (ideally at least a year post op) and see what's happening with them. Do your research but ultimately trust your gut instinct - figure out exactly what your concerns are and try to find answers to them, but if it feels wrong or you're not ready for it, don't do it. If you decide you're ready despite the risks and think its your best bet, go for it,

Good luck with whatever you choose

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