zoladex side effects : hi all. So I’m lying... - Endometriosis UK

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zoladex side effects

Lovethemoon profile image
15 Replies

hi all. So I’m lying here awake again so thought I’ll add a post. I’m on month 2 of zoladex with the 3rd injection happening in less than a couple of weeks. And I’m really not convinced by them! I don’t think I’m any better off! Ok so my deep pelvic pain and erratic bleeding has worn off, however it’s been replaced with every menopause symptom I can think of. It’s been replaced with such a heavy dull ache in my joints. By the end of the day my pelvis, back, knees, ankles all are excruciating with the restless legs which keep my awake at night. Plus the constant night sweats. The hot feeling that just makes me feel irritated and quite panicky. So at this point I don’t know what to do! Should I speak to my endo nurse and see if there is a different hrt I should be on? Do I carry on with the injections for the full 6 months? Life doesn’t feel that much easier being on them and I can’t see how these menopausal symptoms will ‘get easier’ and these doctors always promise 🙄

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Lovethemoon
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15 Replies
Mindfullness4791 profile image
Mindfullness4791

I'm sorry to hear you are feeling so rubbish. I felt awful on Prostap too. They added in HRT but that flared it all up again. I think Tibilone is the best option as it is a low dose. What HRT are you on?

Lovethemoon profile image
Lovethemoon in reply to Mindfullness4791

Yes I’m on tibilone x

Mindfullness4791 profile image
Mindfullness4791 in reply to Lovethemoon

They added estradiol gel and it made mine really flare up. It really is like being between a rock and a hard place 🥹 x

Keke123 profile image
Keke123 in reply to Mindfullness4791

I’m on livel

Sunset-lady profile image
Sunset-lady

Hi, why are you on zoladex? Are you waiting for a hysterectomy?

Lovethemoon profile image
Lovethemoon in reply to Sunset-lady

I’m not. I have small amounts of adenomyosis in my uterus and thickening of some of the vaginal ligaments, again more adenomyosis and they don’t want to operate so put me on zoladex to try and suppress and give me some time off without pain! Their answer is I’m 34 and may want more kids so just biding my time before getting pregnant 🙄 which isn’t the answer for me. I don’t want anymore kids. I was lucky enough to have one and I’m happy with that 🙂 don’t understand why they always think having a baby solves it!

Goiaba profile image
Goiaba in reply to Lovethemoon

Omg that is ridiculous!!! If you are sure you want the hysterectomy, speak up and fight them. I am 30, was in the exact same position as you and it took me about 2 years to find a doctor that would do it. To the point I started taking my husband to appointments with me because they would only ‘believe me’ if he was there to validate what I was saying.

How can they expect us to bear and raise a child in that much pain? I couldn’t even have sex to make a baby, for starters!!! This makes me so angry and I’m so sorry you are in this position. I had severe adeno and I was never told prostap would help with that? Just it would just slow my endo down. They did offer me the mirena coil which is supposed to help with adeno but for me it did nothing as it kept growing.

I know it might sound crazy, but exercise helped me a lot with the menopause symptoms and pain. It was a colossal effort at the beginning, but once the endorphins kicked in it made a massive difference.

I hope you find something to help and a serious medical team that listens to you. The hysterectomy was the best thing that happened in my life in the last 4 years and I could t be happier, so suck it drs who think they know me better than myself!!!!

Keke123 profile image
Keke123

are you taking hrt? Make sure you get one that works for you. I went through about 6 before I found one that works perfect and I have no menopause symptoms and my pain has gone from a 9 to a 2/3. Life is now liveable

Cupcake87 profile image
Cupcake87

Hello! Sorry to hear you’ve developed more symptoms. My understanding is that zoladex flattens your normal hormones (effectively putting you in a chemical menopause to trick your endo symptoms into stopping); so you should have been put on a HRT gel or patch to help give you just enough to prevent or at least manage the menopausal symptoms.

So please do reach out to your endo nurse. I do believe it is possible to manage your endo symptoms with zoladex, and then the menopause side effects with the correct HRT treatment.

Best of luck!

Lovethemoon profile image
Lovethemoon in reply to Cupcake87

Thank you 😊 I am taking tibilone every day. So whether or not it’s the right hrt for me so I’ll speak with the nurse x

JulesUK profile image
JulesUK

I had zoladex which did take the pain away whilst I was on it. I did have some side effects but for me taking the pain away out weighed the side effects but it sounds like that isn’t the case for you. I’d definitely speak to the doctor and see what your options are. For me long term the Mirena coil has been the most effective treatment by far.

anonymousunicorn profile image
anonymousunicorn

I am due my 5th injection on Monday. This post sounds exactly like me a few months back. Stick it out a little longer if you can 🤞🏼 for me it was within the 3rd month that I felt the menopause/HRT balance out (I am on Tibolone too)

bunmum2 profile image
bunmum2

Yes talk to your nurse, but also see a good/preferably recommended medical herbalist and discuss trying Vitex Agnus castus - I had a bad time with the zoladex injections, and lasted three months until deciding to try the herbalist route instead, so glad I did as this herb helped me just as much as the injections did minus the side effects. I was on Vitex agnus castus for about three years until I was post menopause. Or, you could try Wellsprings natural progesterone hormone cream to counter estrogen dominance which may cause the endometriosis- google it and have a good read up about symptoms etc. Good Luck xx

Sunset-lady profile image
Sunset-lady

Hi, they often give Zoladex to women who are waiting for a hysterectomy but you must be in so much pain they've given it to you. It dies put you into medical menopause but you are on add back HRT to help. You can only stay on zoladex for 12 months so it's not a long term solution (although I have heard of women being on it longer). If you have a hysterectomy then you'll be in surgical menopause but probably on a much higher dose of HRT with progesterone because you have endometriosis. Why don't they try the coil? Lots of women swear by the coil. I would have loved it but it won't sit in my cervix. I agree with bunmum2 about looking for herbal route. I'm seeing an acupuncturist who specialises in fibroids and endometriosis and she's helped tremendously. Zoladex is a life saver for some women but not for others. If you don't want more children then push for a hysterectomy. Be very clear about why you want one. They'll try to put you off and go on about risk of prolapse etc later down the line but keep pushing. Zoladex is usually the last hurdle before they offer you a hysterectomy so keep focused on the pain. The NHS have a national policy about pain and they will keep asking you about it. If you tell them it's terrible (which it obviously is) then they'll react appropriately. Good luck x

Vasiliki99 profile image
Vasiliki99

menopausal is painful .........i got menopause cream spray herbs still i think it helps small amount i wish u the best

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