How effective is zoladex for reducing your pain?

Hey ladies. I'm wondering what the overall experience of zoladex in reducing your pain has been.

I was on it several years ago, for 5 months and it worked quite well... No periods and little pain. Hot flushes were bearable in the scale of things.

Currently I'm in severe daily pain, but I'm waiting to be reffered to a new specialist (I also only had surgery 5months ago to remove severe endo, but my surgeon didn't 'get it all')

I'm desperate to dull the pain which has become constant and debilitating in the last 6 weeks, whilst I'm waiting to get proper treatment.

I don't do well with hormone pills and do not want the coil, so see zoladex as my only real option, other than stronger painkillers (currently on solpadol and naproxen), which will probably make me less able to function with side effects.

All advice and experiences welcome X

6 Replies

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  • I assume you are being treated in a BSGE centre. The NHS contract for treatment of severe endo confirms that medical treatment is not effective for severe endo. Much of the pain is caused by adhesions and/or nerve involvement and since this is not caused by oestrogen it is not relieved by its withdrawal. Additionally deep endo becomes unresponsive to hormones. The only treatment is excision.

  • No, this is my problem. I wasn't at a bsge center, but my surgeon said he would excise the endo and I thought he would be skilled enough to do this well. I know he left endo untreated as he told me at my recent follow up appointment (which was gutting to me), but I'm in the dark as to exactly what he did and didn't do.

    I had surgery primarily so we could do more IVF ( by removed big multiple endometriomas). I started the cycle last month, but the drugs had a huge effect on my pain levels and yesterday we decided to abandon it. I have been through IVF before with my endo 4 years ago and it was bearable. This time it wasn't as obviously, despite 2 surgerys , my endo is much worse.

    I'm now waiting for all my medical records and surgery notes/photos and then paying privately to see a specialist (I've researched and found one, who although he moved last year from a bsge center, is highly skilled and highly recommended)

    So it will be months before I get surgery and I have to somehow cope in the meantime. Hence taking painkillers constantly for the past 4 weeks. I will reluctantly be asking for stronger ones today from my gp, but this means I may have to go sick from work. So will try anything that can lower my pain whilst I'm waiting for surgery (which I know is the only possible successful treatment) I know zoladex does nothing to cure endo, but if it helps with period pain and everyday pain then it's completely worth being on it temporarily. Hence my post to ask other ladies on here.

  • Have you joined my new Facebook group for UK women - EndoRevisted. We have nearly 400 members in a month most from here?

    facebook.com/groups/1148144...

  • Yes, joined the other day as you responded to a previous post of mine 😊

  • Hi, I was like you and thought zoladex was brilliant last time round. I had it three years ago and like you I only had hot flushes to deal with. I am currently waiting surgery for endo in the bladder and have had 6 injections of zoladex whilst it has eased some of the pain the other side effects have been bad, severe bleeding , continuous headache and really bad hot flushes so bad I have to change my clothes. I have also now had my knees playing up. V strange. Its so bad that you had surgery and are still in so much pain, I hope you find a consultant that helps you soon. Take care Sam X

  • Samy.... Oh blooming heck, I'm so sorry zoladex has not been a good experience this time around for you. Good about pain relief but the rest sounds awful.

    I do worry my body will react differently as well. My endo and pain is much more severe now and I have since developed M.E. Which throws my body into chaos daily anyway. I'm doing the monthly injections just incase they don't suit me.

    Are you having add back HRT? I have declined for now but know I will have to have it if I'm on it for longer than a few months.

    I'm starting injections on Monday (gulp)

    I tried decapeptyl last year and still had my periods on that one so decided to try zoladex again.

    Yes, I feel hard done to about the surgery not improving things, and that now things are so much worse... It's cruel luck.

    I wish you buckets of luck with your up coming surgery... Hope it goes well and things vastly improve for you xx

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