Started Zoladex today: Hey all, I've been... - Endometriosis UK

Endometriosis UK
49,434 members41,114 posts

Started Zoladex today

fdennis07
fdennis07

Hey all,

I've been really struggling with my endometriosis for the last couple of months to the point that I've been signed off work. I always get really severe pain on my period and bleeding is so heavy that I have leaked a couple of times at work (have to change sanitary towels every half hour at times). I've also developed a chocolate cyst on my right ovary which is just over 5cm and I'm having to take tramadol and liquid morphine every day to help with pain :(

I was due to have an appointment with endo clinic next month but everything is on hold due to coronavirus. After speaking to GP, we decided to start zoladex to put me in temporary menopause to help with symptoms and hopefully stop cyst from getting worse until I am able to have a review at my endo clinic (hopefully things will be up and running again soon...).

Had my 1st injection this morning and I've read that the first couple of weeks can be bad in terms of pain and bleeding.

How has everyone else coped on temporary menopause and any advise with regards to work as I would like to go back soon, thought likely on reduced hours? I'm thinking of asking for a fan on my desk to help with hot flushes.

Any other tips?

Thanks as always fellow endo warriors :)

14 Replies
oldestnewest

I’ve just replied to someone else on this 😊

Had two so far, haven’t had any effects and had period a couple of weeks after the first one, which seemed ‘normal’

Pain that I had before is still around though.

On HRT two weeks after starting.

I’d be surprised if there wasn’t a fan available at work if there’s no aircon

I use Emla cream on jab site to numb it first.

Hiya. I’ve been on decapeptyl for 7 weeks now, the first two weeks were the worst. For me, I found it extremely difficult to urinate. It hurt every time. But after a few weeks this went away. I have had no bleeding nor pain. Just constant hot and cold flushes and my emotional are a little raw. I can go from crying to happy to angry and back again haha. I live in a lot of layers now and keep my fan with me all the time. I have a large cyst and am waiting for it to be removed. It has helped. I hope it helps you too and calms it down :)

Thanks so much :)

I started mine almost 4 weeks ago, I already have the marina coil which they put in while giving me a laparoscopy and removing the endo.

I started Zoladex because I’m going to have a hysterectomy once covid has passed.

I haven’t had any bleeding and pain has been minimal, I started to get some side effects 3 weeks in of headaches and hot flushes but it does not outweigh the good it’s doing in controlling the pain. Although my consultant did say it could take 2 injections to see any difference.

I have my next one on Thursday.

I had 1 and for 2 weeks i didn't have any symptoms and then I came on my period. Then after that I started to get hot flushes but wasn't awful

I had to stop taking it because it was being used for 3 months to prepare me for excision surgery but as surgery is delayed they just took me off it and now i am on the back to back pill called Zoeley- only been on it for 9 days so not had any side effects yet and no longer have hot flushes.

Good luck :)

Hi there I too have been on zoladex 10 years ago and have recently completed a course of another type of injections similar to zoladex (sorry forgot the name), so two mini menopause inside 10 years. I am making contact because of one major troubling side effect you need to know about and you need to get meds for it. Since I had treatment, I have endured severe back pain with the feeling that my spine is both locking up and collapsing. Don't be a twit like me and ignore it, invest in some vitamins to help your bones. I'm 44 in two weeks but the way things are going, I fear I will be like my mum with oesto-arthritis and end up in a wheelchair. My recent side effects of meds was getting upset a lot and hot flushes at night together with poor sleep and weird bad dreams. 6 weeks before I finished recent course of injections, familar pains came back again. I have all symptoms except for bleeding. I'm due to see consultant in June but again I'm guessing like u I have been pushed back cause of coronavirus. I also expect to have a repeat ultrasound, cause like u I had an ovarian cyst, which blood test said was negative for overian cancer. It was on my right side like you. But please get tablets for your menopause, get the vitamins type you can get at your chemist ok, hopefully it will help you. Good luck and speak soon xx

Hi sorry to hear you’re in so much pain 😢

Zolodex made all my symptoms disappear completely BUT I found the menopause symptoms just as difficult. I had constant headaches, hot flushes / night sweats and mood swings. But I also know a lot of women didn’t have any of that and just had a nice pain - free ride so I think it’s dependent on your body. I went on HRT to help with the menopause symptoms but that brought my endo symptoms back. Hope you get some relief soon xx

I have had my second zolodax injection a week ago. I got my period after my first one, but the injection was after I ovulated. I had pain during my period as bad as before but rest of pains have subsided. I would be due on again in the next few days normally (fingers crossed all that's stopped). I've been having some ibs symptoms but bearable. I'm guessing it can't undo damage already done. Re side effects, I've been get some hot flushes but not bad. Main issue is struggling to sleep. I'll be starting HRT next month. I also walk daily to help prevent bone loss. Weight bearing exercise is crucial. Good luck xx

I'm about to have my 6th month injection soon. Life is a little more manageable than before but it's not gone away completely however an add back of HRT really helped my symptoms as a couple of months in they really got going🤣 nothing major just hot flushes (and you dont want those in the heat) but I am too awaiting a total hysterectomy so will be on these until a years time. I am hoping each month will get better 🤞 it works for you!

Hi. I am 53 and I have been on long term Zoladex for about 8 years. The doctor prescribed Tibolone which is a synthetic HRT and deals with the hot flushes and sweats. I have no periods. Good luck with your treatment.x

Hi

I have been on it for 15 months. I love it, it's given my me life back. The plan is I stay on it for 6 months, til I'm 47 and hopefully 🤞 menopausal. When I first started it, I had a period, which I was due for, 2 weeks later. It was heavier than normal but the pain was more like "normal" period than endo pain. My moods were pretty shocking for the first few wks - short tempered, a kind of brain fog, couldn't explain myself and understand things as clearly as usual. This passed. Hot sweats started about 3-4 wks in and have remained, though not as bad. The flushes are manageable and far better than pain. I was given tibilone - a HRT suitable for endo straight away. Buy a hand fan and water spray.

There are side effects and risks with the drug, I was worried about effects on my bones but I couldn't live as I was. Watch your diet, take up a weight bearing exercise and see how you go. Best of luck.

Hi I’m so sorry your having a horrible time. I’m 37 and have been on Zoladex since October I had one a month for 3 month now I’m on a higher dose every 3 months. I was so worried about taking it after reading about it but I’ve been ok. I did suffer a bit hair loss the first month but that’s stopped thankfully 😅. I was getting really horrendous headaches which was due to the zoladex putting my blood pressure up. I’m normally quite sore the week before I’m due an injection as is obviously wearing off. I have hot flushes but there not to bad and I’m very stiff But overall compared to what I was feeling it’s been a saviour. I’m only on them for a year so don’t know what the plan is long term but with it giving me very high blood pressure not sure if they will keep me on it. Hope it works for you and helps get your life back. Xxx

Hi, They say what they need to say. My own experience of cysts. Zoladex will hold or shrink the cyst.

Getting the change on the Zoladex took a couple of months. It was at 4mths I felt different and slept better with less problems.

It is the best thing for you at the moment.

I wish you the best.

💕

I am in my 30s and had a total hysterectomy for endo about 5 months ago. Before that I had been on a variety of progesterone pills and also the mirena and jaydess. Had 6 mo the of zoladex leading up to the hysterectomy. I had minimal to no bleeding which was fantastic. First two months weren’t too bad but I did start getting nights sweats around month 3. One thing I would say is that I found in the few day’s leading up to the next injection I found my mood to be extremely low. Doing some research around this I found people that had horrific mood swings and depression related to zoladex. I was given some add back estrogen in the form of patches and this helped tremendously. Overall I do think zoladex is a good option for those who are waiting on extensive surgery for endo. It definitely helped my pain and bleeding

You may also like...