Endometriosis UK
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Zoladex

Hey, I am 23 and have been on zoladex for 4 years now- I have suffered with endometriosis since I was 15. I am currently having a 3 month break of the injections (consultants choice) and I feel awful. My body is so achey and sore to touch, feel generally down. When on the injections I feel fab.. Has anyone had experience of feeling like this after stopping the injections?

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Hi ZoeJayne

I believe Zoladex is the same as Prostap, so I'll base this on my experience of that.

I started Prostap in March when my first operation got cancelled there and then, I was wrote up for 3m's and they began to work pretty much straight away which was amazing, and such a blessing given how had my pain and symptoms were prior to that, it was awful knowing I was only allowed 3m so I begged my specialist to let me have another 3m as apparently it's only safe to give you them for 6m at a time with a break in between.

So I had my last injection on the 1st Sep. My pain symptoms returned within a month and my period returned after 2m.

I then had surgery on Tuesday and have now started a new course of 3m.

I think it must be down to your body having a break from the medicine causing a temporary menopause and all your hormones starting to kick back in etc as I was exactly the same, I felt suddenly weak and achey and just down right rotten after feeling bloody fantastic for months!

Can I ask how come you've been on them for 4 years? My specialist gave me a hard time getting prescribed them for 6m instead of 3m as he told me all the dangers of long term use etc.

I'm just generally interested, as I know my endometriosis will return, and I'll eventually be in the same boat again and need new surgery etc, so if people are being prescribed these injections long term, I'd like to understand why so I can use this argument with my specialist so to say.

I'm sorry I couldn't be much help xx

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My dr has said I can be on it for as long as I want (30+ years) because of the life changing effects it has for me. I have to have a bone scan once a year but I also take livel a hrt to add some estrogen into my body.

He says that it’s not worth stopping as it’s just the best thing that has ever happened since being diagnosed.

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I believe it's only safe to have 6 months courses if zoladex at a time so it's a concern if you've been on it for 4 years. It causes bone density loss so if you've been on it for a prolonged period and feel achey ask for a bone density scan. You may need the break for the calcium to rebuild back up.

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You do need to have a break from Zoladex every now and again as it weakens the bones. Are you on calcium supplements or HRT?

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I am on hrt.. I have been back on zoladex since having my little boy who is now 4. The injection has been agreed by all of my consultants on the terms I have bone scans every 6 months (which results have always been fine). The new agreement is I have the injections for 9 months and then have a 3 month break which is what I am doing now. I feel so fab when on the injection, but I currently feel so ill, very achey, body is sore to touch, didn’t know if this could be side effects from not having zoladex anymore.

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Hey yes Ive felt rubbish after stopping my injections and HRT , my joints have been aching and Ive had knee pain which Ive never had before.Im hoping is passes in next month X

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Sorry to hear that your struggling. I'm still on zoladex and have experienced the same thing when I had a break which they suggested. I've managed to get put on zoladex without a break and as long as you understand the risks to your bones it's possible that you can stay on it if your consultant agrees. I would suggest making another appointment explaining the problems you have when not on zoladex and ask to be put on it permanently

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I have been put on it permanently hence having it for 4 years, I’m really bad tbh as I haven’t ever looked into it and all the side effects. I just know it works so never ever question any of it. Just struggling as being on it for so long - I feel a little better today. Thanks for the advice.

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It effects your joints and mood. The best thing to advise would be to take calcium tablets for your joints and as I know it's difficult try and do small a of exercise to keep the muscles and bones strong.

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I've been on Zoladex now for just over 7 years without a break or hormone replacement. I have DEXA scans every 2 years and my consultant is planning on trying to take me off it in about 3 years when I'm 52 to see if my body is in the menopause, if not I'll be straight back on it. Endometriosis has caused me a lot of damage and in 2010 I nearly died because of it, was in hospital for a long time, blood transfusions etc. My story is complicated though as I was born without a cervix but have a uterus, anyway long story short I was having periods each month from the age of 14 and it was all building up in my abdomen, it caused organ failure, I now have bowel disease, collapsed lung surrounded by fluid that they can't remove as it's stuck like glue to my other organs, that was a very painful experience when they tried to remove it. They can't operate to fix my bowel as everything is literally just stuck together in my abdomen by massive adhesions and they'll only operate in an emergency situation if it becomes life threatening . I can only eat a low residue diet as I can't digest food, it's not nice at all. The Zoladex gives me a bit of relief from it all but the main thing I don't like is the mood swings, I scare myself sometimes at how angry I can get at stupid things. I still have a positive outlook though and I think my sense of humour gets me through the dark days :)

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Sounds horrible. It really is a nasty thing to have. I am going to try and stick at this break for 3 months as I am only 23 and think it’s a lot to have. Glad you have a positive way of thinking! X

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Hi, I've been on Zoladex for the last 5 years and can't cope without it. I saw my consultant recently as I was finding it wears off too quickly and am now having it 3 weekly instead of 4weekly.

I also take Arimidex, a tablet that blocks oestrogen and have been on that 11 years now.

Previously, have had multiple surgeries, pretty drastic, have no womb or ovaries and have had endometriosis removed from all over the place.

I think it's appalling that you are being denied something that helps you so much. I feel so poorly, weak and in pain when my Zoladex is wearing off and also have low mood.

Endometriosis is a really serious complex condition. I never understand why they seem to worry about giving Zoladex - I know it's bad for the bones but most medication has side effects. They wouldn't deny insulin to a diabetic would they?

I hope you can soon get your Zoladex back

Having a break is hopeless as you will then take time to get back to where you were.

Good luck, press your case! Why should you suffer?

Morag

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To add to my previous reply, why are some doctors still under the impression that the menopause / hysterectomy is a cure. I had hysterectomy nearly 14 years ago, my endometriosis is as aggressive as ever!

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I’m 23 and have been offered a hysterectomy twice. They told me I wouldn’t ever have babies, I got diagnosed at the age of 15 and fell pregnant at the age of 18 after having a laparoscopy to remove some of the endo. Since then I have been offered a hysterectomy to help but after thorough consideration have declined twice.

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You are absolutely right to decline because it really isn't the answer. I so hoped it would cure me. I also had lots of endometriosis removed from bowel, bladder, ureters, etc but it always fights back - evil disease!

Best of luck!

Morag

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Hi all, I'm pleased to finally see some positive comments about Zoladex. I had it on and off for about 3 years following the removal of a chocolate cyst (for the second time) and suffering from debilitating endometriosis pain for about 20 years. In my experience doctors are wary of prescribing Zoladex long-term, but after visiting the specialist at UCLH, I felt like I'd won the lottery when he agreed that I should have it (Prostap) until my natural menopause (another 10 years or so). It does come with risks (mentioned in previous posts) and it's not for everyone, but it gave me my life back. I'm happy to live with bone density scans and HRT instead of horrendous pain, disabling back ache, enormous amounts of blood every month and paranoia that the chocolate cyst they found 2 years ago would grow and burst yet again. The cyst is still there, but hasn't grown since I've been on Zoladex/Prostap.

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I'm horrified people are given this drug for so long. All circumstances are different but it shouldn't be taken for such long periods of time. Scary stuff. Part of me wishes i could've coped with the side effects and continued but the consultants within the gynae dept all had differing opinions on time frames people should take it for. I think there should be a blanket length of time because of the risks. I was getting mixed advice everytime i went to see the doctors! X

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Sorry to hear you’re horrified by zoladex. Believe me, being on zoladex is 100% better than the horrendous, debilitating symptoms from endo. I was literally disabled for more days in the month than “normal” during my worst time; and I was terrified that my third choc cyst would grow and burst yet again. I speak from over 20 years of suffering. This is a serious option for many people, although not to be taken lightly. In my case, I exhausted the IVF pregnancy route and decided I never wanted periods again. The problem is that more research is needed and better information given to “specialists”. For example, my endo gynae (from one of the best hospitals in the country) was pretty ignorant about zoladex and would have pushed me towards other options that would not have suited me at all. The coil makes me shudder as I’m fed up of people poking things up there, yet I respect it might be the solution for someone else, and progesterone pills brought back my period and started to affect my mental health from the worry. After going over his head to an endo specialist in UCLH (listed on the BSGE), and after lots and lots of tests, the specialist decided to support my desire to go on Zoladex until my menopause. That was 2 years ago and with HRT and monitoring, I am a new person. A no-brainer for me. 😊

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Sounds like it works for you whichvis amazing. I really wish i could've continued because my pain is totally unbearable but literally my mental health has to come first. My mood was altered so much through it that i tried to kill myself. My mental health team and the gynae team agreed it just wasn't going to work. Now all of my pain is back, it's horrendous, I'm starting pain management and I'm not coping but my moods/hormones are more settled now I'm off zoladex. I'm gutted i had all the side effects from it because being virtually pain free was amazing but when it got the point that my hormones were that messed up, i had to put my mental health first. Xx

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Hi Leese16 so sorry to hear of your suffering, I can completely understand the pain and frustration you must be feeling. I can see that you’ve got some dedicated teams helping you, and I’m glad you’re not giving up. I find it amazing how powerful hormones are, they are so underestimated. Please, please don’t give up - is your gynae team part of the BSGE bsge.org.uk? I asked my GP to refer me to my chosen team after a not-great experience with my local hospital and they listened to me and understood my needs. If the team is, then I’m sure you’re in good hands - hang in there and don’t let anyone make you do/take anything you’re uncomfortable with. I wish you the best xx

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