Hysterectomy after long term zoladex? - Endometriosis UK

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Hysterectomy after long term zoladex?

Keke123 profile image
10 Replies

Hi there,

I’ve been on zoladex for coming up 6 years now and it’s the best thing I’ve ever done for my endo. I have little to no symptoms but the one thing I can’t stand is being attached to my drs every 4 weeks. Can get tricky with work and holidays.

I want to opt for a hysterectomy and just wondered if anyone has done this and if the side affects are the same as the zoladex?

I am very fortunate and all of my side affects are very tolerable. The odd hot flush after I get the injection, little brain fog but that’s really about it. I am massively worried that it’s not really the same even though essentially it is, and I’m going to become much worse.

I have frequent bone scans so they are all good.

For added info, I’m 32 and not really interested in having kids.

Any advice appreciated :) even normal hysterectomy’s to stop endo advice would be good too :)

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Keke123
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10 Replies
JulesUK profile image
JulesUK

Sorry I can’t help with the question but just to ask do they no longer have the three month zoladex injection? That was something available some years ago when I had zoladex and may be more convenient for you?

Keke123 profile image
Keke123 in reply to JulesUK

sadly no. They have said it’s only for prostrate cancer the 3 months and my endo dr said for women the 1 month one works much better and he won’t let me change.

Something also about licensing too my nurse said as she looked into it for me (think she was getting fed up of me there every month 😂) and apparently it’s not licensed to treat women. Odd really.

JulesUK profile image
JulesUK in reply to Keke123

I did have the option but that was about ten years ago. I did also find the three month one wore off before the time was up to have the next injection. Can I ask you what type of bone scan you have as I haven’t been offered one and it’s something I feel would be useful. Did the GP refer you? P.s I opted for the merina coil and it’s been great for me.

Moonglo profile image
Moonglo in reply to JulesUK

It’s called a dexa scan - yes it’s the GP that refers you

JulesUK profile image
JulesUK in reply to Moonglo

thank you.

Moonglo profile image
Moonglo

Hey there, long term Zoladex user here too - I’m using the three month one, so I’m not sure what your doctor has been checking. It’s possibly because Zoladex is ‘normally’ only licensed for 6 months, but clearly we are the exceptions.

My use of it was formally approved by my London BSGE consultant in 2016 (following on-and-off use since 2013) and now I have the freedom to choose between the monthly or three-monthly one. Age could be a factor as I was 40 when he approved my use of it - perhaps thinking I would be on my final decade of ‘fertility’.

I’m also curious about having a hysterectomy and have been wondering whether I’d get different symptoms to the ones I get currently (like you, mild). Following to see other replies, although you’re welcome to message me if you want to chat over it further.

SK2021 profile image
SK2021 in reply to Moonglo

Hi just wondering did you use add back hrt with the zoladex?

Moonglo profile image
Moonglo in reply to SK2021

Hello! Yes, they put me on Tibolone once the Zoladex use was approved. It’s a synthetic type of HRT and I haven’t had any problems.

SK2021 profile image
SK2021

hi just wondering did you use add back hrt during your treatment with zoladex? My consultant prescribed me hrt but I find that every time I try taking it my endometriosis flares up massively! Any tips to protect your bones to prevent osteoporosis in the future? X

Keke123 profile image
Keke123 in reply to SK2021

I went through about 5/6 before I found one that suited me so go back to your dr and ask for a different one. Livel or something like that is the one I use :) hope that helps

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