pain whilst on zoladex

[SK2021]

Hi everyone

I just wanted some advice regarding zoladex, I have been using it for the last 9 months for my severe endo but for the last month or so I have started flaring up again I’m always in pain having to take painkillers daily around the clock. I felt fantastic before this last month best I’ve felt in years.

Has anyone experienced similar? Can you just suddenly stop responding to zoladex?

Any advice appreciated thank you!

[claudia_91 Moderator Endometriosis UK]

Hi SK2021

Sorry your symptoms are flaring up after being on Zoladex, that's really disappointing. I haven't taken it myself, so can't comment on that side of things. Hopefully others can. Please contact your consultant if you're concerned though.

Hope things improve, sending strength!

Take care,

Claudia

[Catlover3]

My daughter was on zoladex but her surgeon changed her to Depoprovera instead. She is so much better with no spotting at all. It has stopped her stage 4 endo from getting any worse and with major revision surgery to remove scar tissue she is now pain free for the first time in years.

[SK2021 in reply to Catlover3]

Hey thank you so much for your response. I will look in to depo provera x

[Keely88]

I was on Zoladex for a year and constantly had pain, they just kept saying it would work in the long run. They then changed me to prostap which was much better and really helped, I did still have some pain but it was definitely not as bad as it had previously. They don’t like you being on it for a long time though so I was only on it 6 months. I will say with prostap though the hot sweats were unreal, they had to increase the HRT 4 times and I would still wake up dripping wet. The amount of bedding I went through was unbelievable. I hope things are sorted for you soon.

[SK2021 in reply to Keely88]

Thank you for your reply! That’s exactly what they keep saying to me that it’ll work eventually but I’ve had 9 injections now. X

[Silverskylark]

Hi, I'm on Zoladex and on my second round of it. First round I was on it for 15 months and so far this time round I've been on it for 7 months. I have experienced flare ups through both and have had various painkillers to try and control them. They ease the pain but never really get rid of it completely. I found a TENS machine helped sooth it a little. My pain is mainly lower back and around my right hip. I also get the usual stabbing pains. I hope you find a way to cope with the pain and maybe a chat with your GP or consultant will help too. It's better to make them aware and if there is anything they can change then perhaps that can be put in place.

[SK2021 in reply to Silverskylark]

Hey thank you so much for your reply! That’s good to know I’m not on my own experiencing pain whilst on it. I was hoping for a pain free life but no such luck eh x

[Silverskylark in reply to SK2021]

It's a shame it affects some of us like it does, it would be wonderful to be pain free. I hope you find some respite and relief. xx

[635703]

I’ve been on it a year now with Tibilone HRT and had full blown periods with pain. Had a hysteroscopy and biopsies with a Mirena coil insertion. I am still spotting but it’s only been a few weeks, but Mirena’s work with my body brilliantly for 17 years since my diagnosis.

Asking for a Mirena coil could be an option to discuss with your Endo Gynecologist. 2 mins of sharp pain at insertion could change your life like it did for me!

[SK2021 in reply to 635703]

Hey thank you for your reply. I had mirena removed due to it not being effective for over a year. I also bled non stop on zoladex so I’m using norethisterone daily alongside it. It’s quite scary that we’re experiencing this bleeeing even though we’re going through a chemical menopause x

[635703 in reply to SK2021]

They don’t know why. Based on my gut feeling and no science. I wonder if it’s the cells bleeding and shedding?-

[JOSANDY40]

Well myself once on Zoladex for many yrs. In the early few mths it was up and down but I don't think its the drug.

I found all the yrs I took it sometimes the pain would flare up 5days before the next implant was due.

8 wks is not a long time to be on it. It needs to stop Estrogen made cos the pituary gland in your head needs to tell the ovaries not to make any!

In the 1st 6months there was my body adjusting with the menopause, hot flushes at night and change in mood, some low times. All hormones with a few headaches!

It certainly improved my ability to work and live a more normal life.

I started to enjoy sex more after all the systems calmed down.

I did put on alittle weight, went up a size on trousers.

Apart from that it was all good.

Wishing you the best.