Hi I am new here. I am on my first month ... - Endometriosis UK

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Hi I am new here. I am on my first month of a zoladex treatment with Tibolone HRT addback.

karrijon profile image
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I have had increased pain, a very heavy and painful period and really bad low mood and headaches, nausea etc. I am wondering if anyone on here had increased pain when they had the first zoladex injection and did this get any better? I can't decide whether to go ahead with the treatment of three months on zoladex or just to stop the treatment and try something else.

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karrijon
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hayls profile image
hayls

Hi

What you've experienced is completely normal when you start zoladex, your consultant should have pre-warned you that it would get worse before it gets better but it appears there a lot of doctors out there that omit that bit of info! The drug causes an initial flare reaction whilst it bombards your pituitary gland and shuts down your hormones, this causes endo symptoms to get worse during the flare up and until the drug has fully overpowered your system. Also it is very common to still have your period the first month, particularly if you didn't have the injection during the first 5 days of your cycle and even then you can still have it the first month. It should settle down in the next couple of weeks, for me it took 7-8 weeks and after that I had no endo pain at all. It is of course completely up to you whether you want to keep going with it or not and it will depend to some extent on what your reasons are for taking it, if you are taking it for pain relief and really struggling and it takes 7-8 weeks to kick in you are only going to be looking at 4 weeks or so of relief which may not be worth it but if you are having it for a different reason then it may be worth sticking it out until the benefits kick in. Some of how you are feeling may also be due to the hrt (but more likely the zoladex), you dont actually have to take the hrt, did your doctor give you a reason for why you should take it from the beginning? the drug is licenced for use without hrt for up to 6 months use so you could try reducing the hrt, after 6 months I took hrt for 2 months and it gave me so much grief as it caused bleeding so my consultant agreed i could stop it. Good luck with whatever you decide x

Impatient profile image
Impatient

The flare stage is mentioned in the patient advice leaflet along with many of the side effects you can expect to go through over the course of treatment. Please please read it and note down all the listed main side effects and let your family know about them too. You can go through a very traumatic time and put the family through your teenage tantrum rages, so they need to be made aware of what might possible be happeneing and what to expect. And also you don;t want to get caught out by suddenly experience a scary side effect like panic attacks or heart palpitations and think something else is going on when infact it is just the drug affecting you.

Google Zoladex Patient Advice Leaflet if you haven't been given it by your GP or nurse.

Ideally you should have read through it before stating treatment- but even if you did not, you should do so immediately.

You can also google Zoladex, GnRH (the type of drug) or Goserelin (another name for zoladex) - there is heaps of info online about these GnRH types of drugs and on this forum too. Use the search box on the green bar at the top of the page and you will uncover hundreds of posts about ladies experiences on the GnRH drugs.

karrijon profile image
karrijon

Hi, thanks so much for the replies. I had expected some side effects and thought I was prepared but the increase in pain has been pretty intense and I wasn't expecting that - I thought it might be for a few days or a week and has been 2 and a half weeks so far. I also thought my periods would stop straight away!

I suppose I am relieved having read that because I had thought maybe this treatment is not going to work on me! I have been put on the zoladex to basically make sure that the endo is the only cause of my severe pain before any more drastic treatment like surgery. Also the reason for starting the HRT straight away was just to avoid any horrid side effects but I have had them anyway and I think I may stop the tibolone for a while and see how that goes. It sounds like being on the tibolone may be slowing down the effects of the zoladex so stopping that may be an idea??

juebaloo profile image
juebaloo

The first month on zoladex can be hell. My dr didn't mention your system being flooded either, I read that on here. It does improve. Nasty side affects but affects everyone differently. I have a love/hate relationship with it but I can now function at least as pain is so much less. I have v low dose of hrt in patch form which I find helps.

michelle2013 profile image
michelle2013

I have just had my second zolidex in a course of three hopefully. I am not having hrt with it unless I can't take the side effects. I started getting symptoms from the zolidex on day 4 hot flushes to start with. Had fuzzy head and forgetfulness and itchy skin and my pain was also more severe. I didn't have one pain free day in the first month when I am normally pain freeabout 5 or 6 days of the month split between after my period finishes before I ovulate and after I ovulate before period. So a total of 5 or 6 days. The first month no pain free days and stronger pain killers been prescribed. I never got a period but I had first dose on 2nd day of period. But my periods are not the issue since ablation it's the pain. I didn't want second zolidex and wasn't going to but nurse persuaded need to give it a chance. I had it last tues still been in pain but does seem to be easing so it's a case of watch this space. Hopefully pain lessons as I asked for something to give me some pain relief while waiting for gynea to give me a date for hysterectomy. My third is due the day is see gynea so whether I have it depends on pain and if I get a date. Hope things settle down for you

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