Zoladex...worried: Hi all, My consultant... - Endometriosis UK

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Zoladex...worried

Katie22x profile image
18 Replies

Hi all,

My consultant wants to put me on Zoladex for 6 months to help relieve some of my symptoms/control growth on endometriosis.

I have stage 4 and have had two laparoscopys, most recent June last year.

Just looking for any advice/your experiences please, I’m very anxious to start it and not sure what to expect.

Thank you ☺️

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Katie22x profile image
Katie22x
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18 Replies
princessk09 profile image
princessk09

Hey, I’m on zoladex, half way through treatment and the only good thing is it’s stopped my periods. However, you have to take into account that everyone is different so experiences differ.

I get hot flushes a lot which can be embarrassing when they happen in uni in front of everyone and I have also lost control of my bladder especially at night but I’m gonna see my doctor over that as I may need to stop.

You may get lucky and not have any side effects but it’s at least worth a try to see how you get on. Xxxx

Katie22x profile image
Katie22x in reply to princessk09

Thank you for your reply, it just helps to hear from others who are on it too.

Has it helped your pain? Xx

princessk09 profile image
princessk09 in reply to Katie22x

Yeah my periods were the worst of my pain but I have started to get the dull ache again in my ovary area but it’s nothing like it was before treatment, it’s tolerable now. I dread getting periods again haha xx

Tanyac2017 profile image
Tanyac2017

Hi. I was on that for 6 months. It was the best thing I done.

I had endo and was waiting for my hysterectomy.

The side effects I had hot flushes. Especially at night. I put on weight (well I blamed the injection) but that was it. Advantages no periods which for me was great as no more pain.

Def try it and see how you go. Least try for 3 months

Good luck. X

Katie22x profile image
Katie22x in reply to Tanyac2017

Thank you, that’s really helpful and makes me feel more positive about it x

Peren profile image
Peren

Hi Katie. I like you was really concerned about starting Zoladex, the reason being that I had seen so many horrid stories. I had the treatment and was totally fine. I did have hot flushes and night sweats sometimes but this is nothing to be embarrassed about. I was quite open with my team at work as to what was going on which helps. Before I started the treatment I was explaining to my husband how worried I was due to all the negative stuff online and he made a very valid point. If you have a serious negative experience you are way more inclined to post about that than a non experience or even a mildly positive one, he’s right. Also if you start the treatment and you find it’s not right for you, you can always stop

And not have the next shot.

Best of luck! X

Katie22x profile image
Katie22x in reply to Peren

Thank you for your reply and helping to put my mind at ease. It’s just all a bit overwhelming and I appreciate the support on here. That’s very true, you’re more likely to post about something negative. X

Mrsrestell profile image
Mrsrestell

Everyone is different, but it’s the best thing I’ve done. I have my hysterectomy on 4th April and I was prescribed this to ‘test drive’ menopause. I can honestly say that I’m my experience it was so much better than not having it (with similar to you - stage 4 aggressive endo). I take Tibalone too to counteract some of the menopause symptoms. I was having hot flushes etc before taking zoladex (I guess i was perimenopausal already), so having some kind of regularity of my hormones actually helped. I’m also tired and have gained some weight, but I think this will change post surgery when the issues have all been removed and I can move about again freely without a tennis-ball sized cyst in my abdomen.

As everyone else says, you don’t lose anything my trying it and seeing how you get on. You can always stop X

Fitzy3121 profile image
Fitzy3121

I've had zoladex for three months. Overall it's been a huge improvement. The main side effects for me have been hot flushes, difficulties sleeping and some mood changes. However I have now started hrt which my consultant feels will control these. The positives still outweigh the negatives for me. It does start to wear off when the next injection is due and some of my pain returns but it's not as bad as before. And no bleeding at all!

Keke123 profile image
Keke123

Everyone’s experience is different. Give it a good try (for the 6 months) because it’s the best thing that’s ever happened to me.

My pain became so manageable by just a couple of ibuprofen if even any were needed. I sometimes had a hot flush but any side effects were nothing compared to losing the pain every day!

I became myself again, happy, sane (due to not having to struggle every day).

I’ve just been off zoladex for a couple of months because of surgery but starting again Monday as I can’t wait to feel normal again!

I got suggested zoladex years before I went on it as a last resort as other treatment hadn’t worked and I would just give it a good shot. A lot of people here complain but it also works for a lot of people so you could be one of the lucky ones :)

Horseyjules profile image
Horseyjules

Hi I started on the zoladex injection last September for 3 mth to see if it helped my symptoms and it did but I got really bad night sweats and hot flushes. In the last month I got given hrt which worked a treat. I was then off the injection and symptoms returns to have been put back on both awaiting hysterectomy. I agree everyone is different put it did give me some relief. Just waiting for this new one to work 🤞. You can always stop them if it's not right for x

Smileyblonde profile image
Smileyblonde

Hi. I had 6months of zoladex and they were the best months ever. Apart from a few hot flushes and teary moments I coped well. Anything is better than the pain of endo. I did have achy joints as well but that made me more determined to get up and exercise. Everyone is different I suppose. I just had surgery 5days ago. A full hysterectomy with removal of ovaries so I no longer need the zoladex. Zoladex gave me back my life for the 6months I used them and I’m so grateful. All you can do is try everyone is different good luck xxx

Horseyjules profile image
Horseyjules in reply to Smileyblonde

Hi sorry to but in. How are feeling after surgery. I'm on the Waiting list and a bit nervous x

Smileyblonde profile image
Smileyblonde in reply to Horseyjules

I was nervous I’ve 4 kids and that’s all I was really worried about. The pain from endo was so severe I kept telling myself that I would be able to cope with anything else. Surgery was fine I had it done laparoscopic hysterectomy but tender and very groggy. 1 wk over and I’m still tender but up doing things and I’m tired yeah very easily but I rest when I want. I’m more worried now about wats next. Started my hrt and I’m determined to get back to being happy again. If I’m honest I think the surgery was super easy compared to what is coming next. But just keep talking and setting goals. Hope all goes well for u xx

elenaO profile image
elenaO

Hello there,

I had massive fibroids (9 in total and just one was 8cm in diameter) and I had zoladex for 3 months to help shrink them for keyhole. I have to say I got virtually no symptoms, only in the second half of the 3rd month did I get the odd hot flush but nothing to write home about. Also it worked! I didn’t change weight, felt nothing really and was super effective. Everyone is different of course, and you have to the best thing that a doctor you trusts suggests. I would say don’t worry and think of the positive effect it will have. Good luck x

EndoBattle profile image
EndoBattle

Hi Katie,

You have had a few excellent reply’s already. I just wanted to add mine as I have had a few more side effects than most. Same as Mrsrestall I am on Zoladex prior to having a hysterectomy booked for the 17th April also on tibalone to help the hot flushes and see if I can tolerate HRT after my hysterectomy. It took 4 months before I felt a difference to my pain and one of the side effects Of bad pain and swelling in my joints hips, knees,wrist and hands has plagued me. Swelling in my hands and the pain in my hands, wrists and fingers does wear off as the day goes on. I also have put on weight. Having said all that I would still recommend Zoladex. Compared to the pain I was in it has been worth the side effects and it has put my mind at rest that a hysterectomy is the right way to go. I wish you all the best and really hope you have good results with Zoladex. Claire xx

KDA0510 profile image
KDA0510

Hi Katie, I have been on zoladex twice (I have stag 4 endo). The first time was in 2017 for 5 months in preparation for my first round of ivf. And the second time is now currently, as I prepare for my 3rd round of IVF.

And I echo some of the other ladies, it's one of the best medical decisions made for my body. It stopped the endo growth and because of no periods it meant I didn't have to experience the painful cramps/backaches I used to get.

The only side affect I get is the hot flushes, but to me that's manageable. I'd say its definitely worth seeing how you get on with it for 4 weeks; I think you'll know by then if it's for you or not.

Good luck! xx

Katie22x profile image
Katie22x in reply to KDA0510

Thank you! Everyone’s replies have been so helpful, I really appreciate it. I’m seeing my GP next week to arrange the first injection. Like you say, I might as well give it a try, and fingers crossed it gives me some relief. Xx

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