2 zoladex treatment’s in and tibolone add... - Endometriosis UK

Endometriosis UK

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2 zoladex treatment’s in and tibolone add back

Salvia
Salvia

Hi, I’m giving zoladex a chance having rejected it a year ago. The first month I felt excellent until i had a very big anxiety mood swing followed by a heavy bleed with flooding about a week before the next injection was due. This 2nd month is different. I feel low, depressed and prone to anger. I also have terrible aches deep in my joints, particularly fingers, toes, knees and spine. Today I can’t get out of bed as I feel weak all over with a head that feels like it’s been sucked dry of it’s contents, empty ache, ringing ears, and unbelievable fatigue. Is this par for the course? I just don’t know how I’ll cope with my life if this becomes normal? Forgot I feel nauseous too.

Went for an ultrasound last week as my pain hasn’t diminished and endo not visible but fibroids and uneven womb is. Does zoladex help fibroids?

Really difficult to know what to do. My husband is finding it all really stressful as my mood has changed and it panics him when I can’t function. Is it worth persevering?

4 Replies
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so sorry to hear how you're struggling. I have endo but it's within a fibroid (I think it's also in a few other places but the drs think my mains issues are coming from this fibroid that has endo in it). They have suggested I use a chemical menopause for 6 months- I don't know which one it will be that they are suggesting but I've been reading up about them to try and decide whether to try it. I have read that it can shrink the fibroid and endo- apparently it's quote successful at reducing fibroid size. Though this is just temporary and usually they grow back once it's stopped. It's helpful for reducing the size before surgery or other treatments.

Do you know what the aim is with this treatment? Have they said what will happen once you stop taking it?

It sounds like your husband's reaction isn't that helpful? You don't have much control over how this is going to make you feel just now- it's just going to be a few months of ups and downs and it's best to just go with the ride as much as you can.

Deciding whether or not to persevere is a big decision. It really depends on what potential gains you might get out of taking this and whether it's worth the risks and side effects. That's what I am trying to weigh up just now. It's not an easy decision. I'm getting pulled towards taking a more natural approach first though and maybe keeping the injection as a back up plan if that doesn't work.

Good luck. x

I was treated with Prostap which I believe is similar to Zoladex. After the second injection, I suffered so badly with anxiety attacks and was convinced that I was going to die. I was in and out of a&e due to the symptoms which included irregular heart beat, breathing difficulties, severe pins and needles and searing heat in my head, dreadful chills, nausea, debilitating exhaustion ( I could go on). I got so bad that the docs referred me to a mental health crisis team which was frightening because I've always been very rational. The injections completely messed with my head. I am now on Duloxetine for anxiety disorders and propranolol. 6 months on and after only 2 injections I'm loads better but I'm still not quite myself. I wanted to go on the pill to treat my endometriosis and I was told that because I was 43 I was too old. Frustratingly, I am now on the pill and it has worked a treat. I take 3 packs back to back and then have the normal break where I have a period which doesn't cause me any problems. I would never ever EVER touch Prostap again. I wish you all the very best and hope that you find something that works for you, by the sounds of it, Zoladex doesn't agree with you and I would stop before it takes greater hold. Xxx

Salvia
Salvia in reply to Ncarruthers

Thanks for your reply. I’m really bad today and realised I’ve been getting more depressed over the past week. I already have a mental health diagnosis and tried to explain my fears having heard about possible depression and anxiety. In fact I rejected zoladex when recommended 1.5 years ago with the support of my gp and psychiatrist.

This year I came back to see a new consult gynae who I liked and who I trusted and he was much more open to my questions and was truthful about how it matters got be very hard to take. So I gave it a go.

now I know why I should have trusted my instincts.

I’m so sorry youve experienced such bad side-effects and have been left with anxiety. I hope more than anything that it goes away. Thanks for sharing. I’m going to cancel the next implant.

Hello Salvia,

What you are describing (including the anxiety, low mood, joint pain and fatigue) are all established side effects of Zoladex treatment and are associated with the oestrogen-deficient state the drug induces.

Below is a link to the manufacturer's "Summary of Product Characteristics" and also the less detailed "Patient Information Leaflet". It might be worth asking your husband to have a read through these with you as it could help him see that the problems you are currently experiencing are linked to the treatment you have been prescribed - that really helped my other half.

medicines.org.uk/emc/produc...

Oestrogen fuels the growth of Endometriosis, which is why suppressing your body's oestrogen production is effective in suppressing the disease's symptoms. However, your body requires oestrogen for many other functions including the metabolism of your "happy hormones" (serotonin and dopamine) and also maintaining bones density etc., which is why Specialists usually prescribe a dose of "add-back" HRT alongside Zoladex treatment. However, every woman's body is different and some need a higher dose of "add-back" HRT than others. Similarly different women find different brands and formulations of HRT suit them better than others - it's all a bit trial and error. And of course some women find that Zoladex and other GnRH Analogue/Agonist treatments don't suit them at all with or without "add-back" HRT.

Have you advised your GP and prescribing Specialist as to how your Zoladex treatment is making you feel? It is their job to help you manage any side effects associated with any treatment they have prescribed and are administering in order to ensure that you get the best possible therapeutic outcome. That includes supporting you with the mood changes that Zoladex is known to cause and any impact that might have upon your day-to-day sense of wellbeing and your interpersonal relationships. I found it helped to have a copy of the manufacturer's "Summary of Product Characteristics" with me when I spoke to mine so that I could draw their attention to the relevant sections concerning the various side effects I had started to experience. It helped save time and also kept the discussion focused.

I hope you are back to feeling like your old self soon, x X x

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