Zoladex - scared to come off it!

[Dancer1992]

RANT ALERT;

I keep being told by my gynae that I will need to come off Zoladex injections at some point. Obviously I’m aware of this, I’ve just become so dependent on them to live a semi-normal life. Obviously not the life I imagined but that’s endo for you! Kicks you down!

I’ve been off Zoladex injections before.....literally awful, I can’t cope with the endo symptoms. I came off for a while, moved away tried to live my life on painkillers. Came back to the country basically begging for them, because of them! as I couldn’t cope, couldn’t work, would cry at work, sleep all the time when I wasn’t at work. Didn’t eat.

Gynae keeps pushing for me to have a child ASAP. I don’t want that right now and I feel like it’s my decision to make. So trying to stick with the Zoladex......waiting for the day again when they say no. Hopefully never but I know this time will come.

Anyone come off Zoladex and found a better alternative? Just want to have a back up plan.

Been on all pills....don’t work!

Xxxx

[Moonglo]

Don’t let them bully you. If you’re not ready for children that’s your decision. My gynae was pushing for me to come off zoladex so I went to a BSGE clinic and he agreed to keep me on zoladex for the rest of my fertile life. I was 40 at the time with no kids. Obviously you have your own circumstances and they will challenge you so you need to be very clear about what you want. You just need someone to listen. Best of luck xx

[Dancer1992 in reply to Moonglo]

Thank-you this is really helpful to know! Really appreciate the response!

[Dancer1992]

Thank-you for your reply, I have already had this unfortunately 3 times and they couldn't get it because of where it is.

[Moonglo]

UCLH in London. Fantastic service, I had to travel from Cambridge and they did everything (tests, scans and consultation) in one day. Xx

[Moonglo]

Lindle, with all due respect I find your comment quite judgmental. It wasn’t recommended, I had to fight for it because it was the best option for me. The specialist asked me what I wanted, which floored me because that’s the first time anyone has bothered to ask.

Having your ovaries out causes lots of other problems (copied from breastcancer.org

joint and muscle pain

chest pain/heart palpitations

muscle spasms

insomnia (difficulty sleeping)

recurrent urinary tract and yeast infections

urinary incontinence (difficulty controlling the urge to urinate)

emotional effects such as anxiety, depression, and mood swings

Prophylactic ovary removal may have other long-term risks yet to be discovered. Doctors do not fully understand how the loss of estrogen could impact heart health, mental functioning, memory, and other aspects of women’s health.

At least you can stop the zoladex, you can’t go back once your ovaries are removed, and it’s not a cure.

[Moonglo in reply to Moonglo]

I am aware of the risks and I also take HRT and regular dexa scans. I assume Dancer has also been made aware.

[Moonglo]

Thanks for clarifying Lindle. I think Dancer should have that discussion with the expert and see if it’s suitable for her. I don’t believe it treats endo either but it has certainly helped in the six years I’ve taken it.

[Moonglo in reply to Moonglo]

To add I’ve suffered from recurring choc cysts that kept bursting. Zoladex has proven to shrink the latest one I have from 3cm to 1cm within 3 years. If I have to be a guinea pig for this treatment then so be it. Choosing between zoladex and ovary removal is not a choice for me.

[Marie2377]

I am in the same boat. I read on this how women have been given the zoladex over 4 years the only this is they have to have a scan every year to check their bone density hadn’t changed significantly. I was on it for 8months in 2015 I have had 2 ops and now I am back on zoladex prescribed until the end of the year. I am under pressure to have kids and then I guess the next pressure will be a hysterectomy but I have read on here that women still suffer with endo especially on their bowl post hysterectomy.....I will have to ask my consultant about having zoladex over a longer period because pain killers isnt the way for me and neither is a hysterectomy. Really crap condition to have plus I have adenomyosis so 🤯

[EndoPie]

I had my first injection Aug 2019 and I’m supposed to have them for 1 year. I have also been prescribed Livial. It has been fantastic: no periods, no pain, bloating considerably reduced. I do get hot flushes and some sleepless nights, but much preferable to the pain I used to get. I too am worried about coming off it. Although I was 50 when I had my operation and started treatment I was not menopausal. I’m dreading periods starting again if I stop the Zoladex...it’s interesting that I’ve seen comments from people who’ve taken Zoladex for much longer than a year and I might push for that! I would also be interested to hear about alternatives or indeed any reasons to stop Zoladex.

[Dancer1992]

I think I have been on and off then for around 4 years. They eventually stopped

Working as well and I became an emotional wreck.

Now I’m off them, I desperately want to be back on them. I’m back on Cerazette, that doesn’t work but I got spoken to about Danazol which is another option but the side effects are worse than zoladex.