zoladex...?

[Pea87]

I am new here :)... I finally had a laparoscopy a month ago and was diagnosed with Endometriosis, they treated it while I was under but now I have to have a course of zoladex aswell...I had the first one today and it was so painful - did anyone else find it? I'm also worried that my body is going to really change now after reading about side effects... has anyone else had zoladex and what is it like??

[Lillil]

Hey,

I had my first dose of zoladex on Fri so a few days ahead of you. Was really worried that side effects were going to hit with a bang in hours.

I know to expect pain to be really bad in first two weeks and then apparently side effects start to kick in.

The implant in the zoladex takes 8 days to start dissolving at a faster rate so Am expecting my pain to get bad then. Have also been waiting for a withdrawal bleed but still nothing yet, although had twinges for days as if about to happen.

I actually have felt a bit better at times. Probably from sheer amount of vitamins i am taking and also started the endo diet so maybe cutting out refined foods is helping a bit or maybe psychological!

I had a hot flush last night, but am sure they will get worse and been feeling emotional. I feel like saying it's not as bad as I thought it would be but I know things haven't had a chance to kick in yet! I think emotional is partly as 29 and all my friends have had or having babies, whilst i'm having menopause. Plus if one more person tells me oh we all have to go through it or it's not too bad who hasn't got endo think i might scream at them...it's not the same i'm injecting something that is harming me into my body!!!ahhhhh!!!

Keep each other posted on getting through this journey.

I hope yours is a smooth one and brings you some relief.

xxx

[Amb43 in reply to Lillil]

Hi just wondering how you are getting on now, I am just about to start monthly Zoladex injections with Livial add back. x

[Lillil in reply to Amb43]

Sorry this is my third attempt to reply it keeps crashing! :/

The above feels like a long time ago. Ive had my fourth injection this morning.

It has been a journey!

I think it depends what you want from it as to whether I would reccommend them.

I think from your previous posts you have said you are pretty low and for me the reason I went ahead is because endo was consuming my life. I was off work, mostly bed bound and couldnt drive, make own meals etc and in Constant pain with severe fatigue. I also didn't have many treatment options because of family past medical history.

Have you looked into how it works etc?

My top tip is to do tons of research. From what i have read the ladies who found it unbearable or stopped mid treatment were those who werent prepared. My gynae was honest with me and said the first month would be hell and i wouldnt get any pain relief until the end of month two.

I have had nearly every side effect listed and some quite severely, but i havent been able to go on hrt because of medical history. My side effects have included an initial flare up of pain, severe nausea, migraines, bad joint pain/arthralgia in hips, wrists ankles and one elbow, initial weight gain-7lb, now lost again, loss of appetite, more emotional, fatigue- some days better than others not as bad as when pain was severe pre injections, severe hot flushes, cold sweats, insomnia at times, memory loss just silly things like can forget how to spell things, can be more emotional, times of loss of appetite other times ravenous, dry skin.

Overall i am glad ive been on the injections. After five months off work i am back! I can drive most days, can even go for short walks. I have more energy in general and by end of month one it was like a cloud had lifted and the pain faded. I still get pain but no where near before. Now i maybe take painkillers twice a week and often its related to side effects of drug rather than endo pain.

Ive had to go onto two anti sickness meds because of zoladex and had some of the worst days of my life whilst ive been on it. However getting some quality of life back has been worth it and i feel my body needed the break as it couldnt cope with the pain any more.

Im scared stiff of finishing the drug and it all growing back but would never stay on it long term no matter how good its been!

My tips for getting through it is be honest with people around you about what the treatment is like. I find most people havent understood until you tell them its intense treatment and its a cancer drug they seem more able to relate with what it would be like for you. Do loads of research so you can make an i formed decision. I wasnt worried about things like flushes was more worried about bone density etc but had no idea how much flushes would effect me. Invest in a fan. Write a diary, helps with frustration. Treat yourself to something small after each injection and see it as a milestone. Plan to do nothing for two days after your injection. I take the following vitamins and if i miss them due to nausea etc my symptoms really increase; supermarket own menopause vitamins, calcium and vit d for bone density loss, magnesium for fatigue, evening primrose oil and star flower oil for hormone balance, soya isoflavens for hormone balance and sage for flushes.

If you want to ask any questions please feel free to private message me.

Good luck, hope it brings you some relief xxx

[Pea87]

Hi, thanks for your reply, I have never actually been able to speak to anyone else who's going through the same thing as me so it's nice!!

They didn't really explain that much about the zoladex to me to be honest, I even thought it was just a regular jab until I turned up for it! The nurse did mention I might get hot flushes and tiredness though. Do the side effects disappear once the course is finished I wonder? My course is for 6 months. How long is yours for?

I know it's really hard when some people just don't understand how bad the pain is.

I suffered for 11 years with it (I know unbelievable) before my GP finally did something. It is some relief to have it diagnosed and hope that the treatments will help it...

Hope you also get relief and hope the pain/side effects aren't bad...

Oh and you shouldn't worry about being 29 and not have a baby

xx

[sanchia46]

I took two courses of zoladex, I had no side effects and was pain free

[Lillil in reply to sanchia46]

Oh this sounds fab! Xxx

[Lillil]

I had read loads of horror stories on here about how bad side effects can be and how ladies were refusing their second jab because it was unbearable. I was considering not having them at all. Then I asked on here if anyone had any positive stories and it seemed their were loads of those too! Seemed that unprepared people eg people whose gynaes didnt tell them what to expect had a really hard time so I'm hoping my research will help me!

A lady on here told me to google zoladex and read the manufacturers instructions which i found really useful and also knowing my gynae said not to expect pain relief until towards end of second month. I am initially on three month course and if it works they will e tend to six months. They generally don't let you have it for longer as not recommended by manufacturer due to side effects such as loss of bone density.

Lots of ladies recommended taking various vitamins and supplements. Not sure if it is psychological or because injection starting to cause action, but every evening, about time ive been taking vitamins ive had hot flushes and been tearful plus had an increase in pain. My pain is usually bad anyway in the evening, I think fatigue builds up. Anyway within a couple of hours of having vitamins am feeling so much better in myself.

Im taking a menopause multivitamin,evening primrose oil combined with starflower oil, vitamin d and calcium (because of bone density loss), soya isoflavins and magnesium. I have also been advised to get sage apparently helps with flushes. It was expensive but got on 3 for 2 at tescos and figured would be worth it.

When the side effects disappear is individual I think, the same as pain and periods returning. Some ladies are 8 weeks others are months and I have heard some say are ongoing.

Oh also, I wasn't advised at first but to check you know zoladex isn't a licensed contraceptive and you can't be on other contraceptives at same time so you have to use a barrier method during and for 12 weeks after injections finish.

Think they are most useful things I have found out so far. Oh and also apparently there is a special hormone cream. You can take if you get vaginal dryness.

Did they speak to you about hrt?

Today my pain was bad when I woke up. Mostly in my hip and back plus some ovary twinges. I also feel like I am glowing on the inside! but cool to touch. Still bloated as if my period but still nothing.

When you say treated endo what did you have done? What stage etc?

My op was 23rd Jan so we are very close in experiences, you right nice to speak to someone going through same thing at same time xxx

[Zalakia]

Hi, I hope you guys have a more positive experience with Zoladex than me, I lasted 2 injections, side affects for me were awful. I was taken off the zoladex injections & put on Visanette, slight pain with intermittent bleeding but I feel much more human on this medication. Good luck. X

[Pea87]

Thanks for your replies everyone. Sounds like zoladex affects everyone differently (or not at all) so guess I'll just have to wait and see...fingers crossed... :/

Lillil - Sounds like vitamins help, I might try that too.

They said it was mild to moderate endo, and they use laser/heat type of treatment to basically destroy it. The surgeon said to me it should improve immediately. When I had the diagnostic surgery they asked me if I want to sign a form to say if they do find it, they can treat it, so I did. I was just so nervous about the op I didn't want to have to go through it again to treat it!

Hope that helps

x

[loopylou55]

Hi, I too are on my 2nd zoladex injection with Livial. My joints are aching like crazy (like a flu type ache), appetite has gone through the roof, eating anything and everything i can get my hands on (not good for my weight) and occasional nausea, headaches and hot flushes. The most severe thing for me is the joint pains i am experiencing but know it's normal so trying to bare with it..only another 4 injections to go...sigh xx