Newly diagnosed endo. Sort of. - Endometriosis UK

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Newly diagnosed endo. Sort of.

Hi. I wondered if anyone has any advice? I'm 44, been having lower abdo / groin pain for the last 8 years, worsening in the last 2. Been off work since April. At first it was thought to be kidney related so I had lots of scans etc for that but all clear. Finally my GP suggested endometriosis. I saw a gynae doc yesterday.

She said I almost certainly do have endo but because I have a high BMI and am a bit of a weird shape (all my excess weight is on my lower abdo, I have stick arms & legs, no bum!) she's not happy to do a lap. This was upsetting because I've lost 8 stone in the last year but it's clearly not enough.

Anyway. She's prescribed Zoladex injections and Tibolone to counteract any side effects. My first injection is next Monday.

I'm worried. Worried that the treatment won't work, and that it will ause hideous side effects. I need to get back to work, I need to stop taking so may painkillers. At the money k have a morphine patch, am on morphine tablets, codeine, tramadol and oral morphine when needed. Because of all these opiates I cant drive, can't really function, I have a job which involves looking down a microscope, making important medical decisions etc abdo just can't do it at the moment.

Can anyone who's had the Zoladex tell me what to expect? I know every treatment is different for every patient but I'd love to hear some experiences.

I've been told to only take the Tibolone if i get side effects.

It's all a bit of a leap into the unknown really.

I'm glad I've found this forum :)

Sorry this is so long!

5 Replies
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Hey

Have they fully explained the zoladex to you? I fear not, if I were you I would read as much as you can regarding this drug before you make an informed decision.

This may be useful endometriosis-uk.org/sites/...

x

Reply

Thanks for that link. No, not a full explanation. Too much to discuss and not enough time really. She said that it will put me into a premature menopause which, if I DO have endo, will help. If it makes no difference then it will be assumed that I don't have endo.

I have, and will continue to read up about it but at the moment I'm definitely going to have the injection, I don't know what else I can do, I can't function on all these painkillers, I have to try something else.

Do you think it's worth trying to see my GP before I have the injection to discuss it more?

Thank you again for replying x

Reply

I had decapeptyl, which was similar. The first few weeks are hard, as you can get a hormone spike before you go into the menopause, but don't take this to mean that it isn't working. The side effects weren't too unbearable, and TBH I was in such a mess before I went on it that it was an improvement. Unfortunately, I only had about 6 weeks pain free before I started having bleeds and my pain came back. I am still glad I tried it - it gave me a few weeks of respite and it was worth it for that.

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I am currently on Prostap which I understand is similar to Zolodex in that it causes a temporary menopause. It's been great for me, it's massively reduced my pain and I'm feeling an awful lot better than I was before. I'm taking it while I wait for a lap next month just to get me through because my pain was very bad before I started taking it X

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Thank you :) I've read up a bit more and am feeling a bit more optimistic about it. I've read that the injection hurts, I'm not looking forward to that but if it works it'll be worth it! :)

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