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Endometriosis UK
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Zoladex and your experiences?

Hi,

Would any one who is on or has been on Zoladex be willing to share their honest opinions with me? Happy for you to private message me.

I have been given the options of bowel surgery with hysterectomy or going on Zoladex for 6 months to see if it shrinks my endo and symptoms. I may have read very mixed reviews on it and understand everyones body reacts differently to it.

I have stage 4 endo deep infiltrating the bowel and the bowel is stuck to other organs, my ovaries are currently ok but I dont want to try for a baby for at least 12 months (and once my excrucitaing hip pains have been reduced) and I wont be going down the IVF option out of choice.

Any brutally honest opinions would be greatly appreciated right now especially anyone who found it affected their work.

Current symptoms include (which also sound like the side affects of Zoladex)- excruicating hip and groin pains so no longer able to exercise, hot sweats at night, brain fog, little sleep, chronic fatigue, no sex drive, painful bowel moevements with ibs type symptoms, agony for 3 days of periods although periods are not heavy.

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It’s like being between a rock and a hard place isn’t it?

The endo was affecting my work in that I narrowly missed conduct & capability procedures (I negotiated going part time).

Zoladex/Tibolone has given me my life back - I’m virtually pain- and period-free. At the beginning I had hot flushes but now I don’t even get symptoms. I just have to keep checking my bone density levels with scans, that’s it. I’m not going to pretend this will happen to you, but from the choices you’ve been offered, at least you can stop taking it. There’s no return from a hysterectomy.

You don’t say how old you are but from what I’ve heard, it can take several months to get your period back after stopping Zoladex so factor that in when making a decision.

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Hey, thank you for your response.

Sorry to hear that about your work and yes my biggest fear is it affecting work and i am to go away on a weekly training course every month from Jan- April which is going to be hell away from home comforts especially if i start on Zoladex in Jan! Work is very flexible at the moment so i am working from home 2 days a week which is a massive help.

I am 34 and I dont want to try for a baby for another year and only if hip pain is reduced. The intimate side of my relationship has been affected past 3 years so we wont even try for a baby until this pain is reduced and we can have a comfortable sex life again- tho i read Zoladex can cause low libido although i have no libido so that is another concern that it wont come back. i know people say pregnancy can reduce the symptoms of endo but im not willing to have a baby just to try that theory.

Is Tibolone an HRT? I dont recall what one he said i would be put on so i will check and look into Tibolone. My hope is if it reduces the hip pain i can execise again which will help mood and bone density but if that pain remains I dont think i would stay on it if my pains didnt ease. How long have you been on it for and how long do you intend on staying on it for? I completely understand it can have different effects on different women so really appreciate your honesty. :)

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Glad to hear your work is flexible, do they know about your condition? It might help in case you start to have problems in future. There’s an info sheet for employers you can download from the endo UK website.

I’m a bit of an anomaly with Zoladex - I’ve been on it since 2014, with a couple of short breaks to have IVF. After failing to conceive I decided I didn’t want any more periods, and luckily my BSGE specialist agreed to let me take it until my assumed natural menopause. So I’ll be on it for another 8 years or so, unless I experience any problems (and so far I’ve been lucky).

Yes, Tibolone is HRT. It’s exactly like taking the pill every day. Initially I had stiff hands and occasionally a pain in my hip but I genuinely don’t know if that’s from the endo treatment or my diabetes 🤷🏻‍♀️

Regarding libido, I haven’t had a problem in that department, in fact I think I’m more sexually active because I don’t have pain or worry about my period. Again maybe I’m an anomaly! 😂

It sounds like you’re at a good age to at least explore the Zoladex and step back from pregnancy/sex pressures. Let yourself heal and get your life back. X

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My manager knows about my endo but havent updated with what treatment i need as only found out tuesday and need decided first what i go ahead with. Thanks- i'll have a look at the info sheet.

Oh wow so you are on it for the long run! Sorry to hear IVF hasnt worked for you, its a cruel disease endo x

That really is what im hoping that the crippling endo pains go and if that means I actually get any kind of sex drive back even a low libido will do me!! 😂 ( she says laughing thro tears 😂😂). All i want is a healthy, painless (or reduced pain) relationship with my very understanding bf.

Thanks again, & if you dont mind i will follow you as I may have a random question spring to mind! x

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No worries - I wasn’t sure I wanted kids but I know for certain that I can’t have them. I’m happy and my hubby’s very understanding, we spoil ourselves instead of children!

You sound very lucky to have an understanding bf, good luck with your journey!

And do ask, although I might not know the answer! 😂

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Too damn right with what you have both been through together spoiling yourselves is the least you should do :) x

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I have the same endo as you. I went on zoladex approx 12 months ago. Definitely take it with HRT (tried without & felt rubbish) and I’m on Tibolone like Moonglo - my gynae Dr said it’s the best one for endo sufferers. I have opted for hysterectomy & bowel resection as when I came off the zoladex it all came back and also I’m 41 and have been told having another baby is very risky.

Zoladex has definitely given me my life back however I still get a lot of bowel symptoms but more manageable. Libido is rock bottom & my mood is very low. I have gained weight and I’m already big but I wouldn’t be without it.

Oh my endo symptoms didn’t disappear when I was pregnant as I think I had pain from the ligaments stretching & endo bleeding. However my endo did not return as bad for several years!

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Thanks for the reply. Yes i am starting to think i really need to ask my Dr which HRT he has suggested so i can look into this Tibolone.

Did they keep you on it 12 months straight or did you take a break? And did they do any MRI scans while you were on it to see if the endo was still in the bowel? I am dubious about the whole its meant to shrink the endo as i would have thought id need another lap if hes to see if its still there.

Im sorry to hear that about trying for another baby and having the bowel & hysterectomy surgery is such a big thing that we have to face, i hope it all goes ok when you have it done x.

I am glad to hear you feel the Zoladex has given you your life back, it such a shame there are sacrificies involved though. I do worry about libido and mood if i go on it but i really really hope it means i can be physically active again which i know for me works wonders for my mood and anxiety etc for now tho i am trying reflexology and acupucture to relieve me of some stresses and lift my mood.

x

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I’ve had a MRI recently and my bowel endo still there but no worse than scam a year ago! He basically said the endo still needs removing but is not actively bleeding each month as no oestrogen feeding it! I do feel I have a “cycle” each month as have increased pain & very hormonal! I don’t bleed but feel like I may.

I did have a months break after 2 months as I hadn’t been on HRT but gynae dr put me straight back on it.

Good luck xx

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I guess it is to stall the endo from spreading until i want to go ahead with the bowel & hysterectomy. The shock was from initially being told I would need bowel surgery to then finding out it would also involve a hysterectomy. I think Dr thought i would be keen on IVF prior to hysterectomy but I just dont want to put myself or bf through that.

Thats interesting to hear that you still feel like you have a "cycle". Oh the joys of this never ending endo!! x

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I’ve been very lucky and went for ivf assessment only to fall pregnant a few weeks later without ivf. I had an ectopic 3 years later which they said was a result of the endo! It’s such a big thing and you have to do what you think is right for you & your partner. I’m almost relieved to be waiting for a hysterectomy, ovaries & bowel sort out. Sadly I don’t think it’s the end of pain but may give me some relief.

Good luck with your future xx

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