Coming off zoladex: Hi I have made the... - Endometriosis UK

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Coming off zoladex

mintymonkey profile image
13 Replies

Hi

I have made the decision to come off zoladex as I can't deal with the side effects. Has anyone experienced side effects coming off it as your body adjusts to new hormone levels and functioning again?

Thanks

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mintymonkey
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13 Replies
Paigealici profile image
Paigealici

I got diagnosed with endometriosis yesterday due to my symptoms im displaying. Im yet to have a laproscopy however this is my next line of treatment. What side effects were you experiencing?

Keke123 profile image
Keke123 in reply to Paigealici

I think it’s worth trying 3-6 months of injections. My pain went to 0 and I could put up with my side effects.

Classic menopause stuff. Hot flushes, memory fog, weight gain, but I was so much happier and my body was finally not trying to give up on me! Finally could sleep at night :)

Fingers crossed your lap is soon. I’ve been waiting 6 months at the moment for one 🙈

Keke123 profile image
Keke123

Coming off zoladex has been the worst decision of my life at the moment. I had a couple of side effects but the pain is so unbearable that i am desperate to go onto them again.

My hormones flip flop constantly. I feel like I’m on a rollercoaster! Periods weekly and pain worse than before. Maybe it’s worse because I hadn’t had pain for a while :/

I am now awaiting surgery and never realised how zoladex basically saved me!

I’m sure they stable out but I’ve been off it since September and it hasn’t.

Everyone is different remember so you might just go back to normal straight away

warney2411 profile image
warney2411

Hi, I was put on it first time 3 years ago for 3 months and best thing ever I thought. I am awaiting a full hysterectomy. Due to waiting list I went back on it in September and this time round totally disagreed with me. I suffered with severe migraines that lasted a whole month and severe mood swings I stopped after second injection. I was gutted that it didn't work this time. Also didn't stop bleeding. Gynae reckons I'm peri menopause and that's why. I'm 39 just. I got diagnosed 5 years ago, had 1 lap and cysts and endo was removed but came back after 6 months. X

RosalieMax profile image
RosalieMax

Hi, I was on Zoladex last summer for 4 months. It really treated the pain and I had 0 pain for the time I was on it. I did suffer from side effects and I found them very hard to cope with; Hot flushes, not sleeping, feeling miserable all the time, headaches.. When I stopped Zoladex I went straight to IVF hormone treatment and that was no problem, I was mainly so happy to get rid of the side effects from Zoladex!! Felt like I got my normal personality back.

Aliburrell80 profile image
Aliburrell80

Hi, I made this decision too. After chronic lower back pain, hot sweats and night sweats..not being able to sleep either. But please do talk to your consultant about Prostap. It's an injection into the arm or bottom ( I have it in my bum cheek as the arm was too painful) it's worked wonders for me. My nurse mentioned it to me and said many people find it more comfortable. I no longer have any side effects, occasional hot flush but that's it! X

Aliburrell80 profile image
Aliburrell80 in reply to Aliburrell80

Ps ensure you are getting 3.6mg of oestrogen medication too as you'll need it to help with bone density x

Ginger24 profile image
Ginger24

I had zoladex for 7 months while I waited for my surgery. I also took it with tibolone hormone replacement tablets - this manages the side effects of the menopause. I still got some hot flushes and forgot little things but it wasn’t unbearable. I would try asking to take these with the zoladex first before stopping all together. Although zoladex didn’t help me fully it did slow down the progression of the growth of the endo tissue for my laparoscopy. It took 4 and a half hours to get what they could out but could have took a lot longer without the zoladex.

Kikibeaks profile image
Kikibeaks

Hi, have you been offered any hrt to help deal with the side effects? X

wendy_mac profile image
wendy_mac

Yes I was on Tibolone but was advised to stop as tibolone can have similar side effects as well.

wendy_mac profile image
wendy_mac

Sorry thanks so much for replying x

wabbit profile image
wabbit

I have just finished my 6 months of injections. The first month was awful migraine nausea n i wondered what id done. The 2nd injection was the same for about 5days, the 3rd 1day and then nothing. My joints began aching at first but by my 6th im great. Im now scared what happens when it stops...

Ive been told that as this has worked i can have it for rest of my life (with breaks) if people have just started persevere best thing ive had.

MrsMock profile image
MrsMock

I took tiblone alongside my zolodex and it did help with some of the side effects. But after my last injection I had a massive surge of flushes and sweats, completely unbearable, so I stopped the tiblone and they settled literally overnight. I think it was just my body's way of settling itself. 3 months on and things have settled. My periods are lighter and less painful and I am starting to feel like my old self, if you are struggling speak to your Doctor. Good Luck and be kind to yourself x

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