Off Zoladex - feel awful! Please help!

[G3miniStar]

Hi everyone, I really need some support please. I had a lap in October last year that diagnosed stage 4 endo, and then severe post-surgery bleeding. I had a course of Zoladex as an attempt to stop the bleeding from December to May, last dose in May 2021. I also have a Mirena coil, fitted during surgery.

Over the past month or so, particularly even in the past two weeks I have felt awful and I'm sure it's getting worse- worse than I ever felt even on the Zoladex! I have no energy whatsoever, wake up constantly during the night and can't sleep properly, I have such a cloudy head I can't think (I'm struggling to even type this), I've had three migraines in the past week (usually I'd have them maybe once a month), feel sick some mornings and a band of tightness round my head. I feel like a zombie all the time.

I've spoken to my GP who says they basically don't know as all standard blood tests are normal and to wait for my first UCLH appointment in August, which I know isn't long to wait. But I'm at my wits end! Please any advice would be gratefully appreciated! x

[Nikkky]

Hi, have you had blood tests to check your hormone levels? Your symptoms of cloudy head, migraines, head pressure and insomnia are typical of menopause. It could be that your oestrogen levels are still low from being on Zoladex. I guess it takes a while for hormones to get back to normal levels. Hopefully someone on here will be able to advise from their experience x

[G3miniStar in reply to Nikkky]

Thanks Nikkky, no they haven't done a hormone blood test but that's a good idea, thank you. My hormone levels were on the borderline even before the Zoladex so that would make sense x

[Nikkky in reply to G3miniStar]

It could well be menopause then.....how old are you? I’ve had those same symptoms continually for the last 4 months but didn’t realise until a couple of weeks ago that it was down to the menopause. I’ve just started on HRT and already feel slightly better- actually able to function a bit more. Look at the menopause doctor website (it’s great for up-to-date information) and if you type ‘questionnaire’ in the search area you get a checklist of menopause symptoms. It’s amazing the other vague symptoms I’ve had for a couple of years are actually menopause symptoms. Your g.p should agree to put you on HRT without even doing a blood test as they’re supposed to just go by your symptoms. Especially as your bloods were borderline (remind your g.p of this). Also, if you’ve got or had endo you need to take micronised progesterone (Utrogestan) as well as body identical oestrogen. I was only given oestrogen initially (as I’d had a hysterectomy) and my bowel endo flared up. Look at the fact sheet and podcast re: HRT & endometriosis on the menopause doctor website. It’s really helped me just educating myself as the g.p’s are not very knowledgeable on it. Hope that helps x

[G3miniStar in reply to Nikkky]

I'm 32 so I'm not sure they would put me on HRT. I asked for Tolobone (almost wrote Toblerone lol) during my Zoladex and my GP said no unless I had authorisation from my consultant which I couldn't get. Sorry to hear you've suffered! I'll check out the Menopause Doctor! x

[Nikkky in reply to G3miniStar]

You are young for peri menopause but it’s not unheard of and if your bloods were borderline last time maybe you should ask for them to be repeated. They’ll do the blood tests if you’re under 45. It doesn’t matter how young you are- if you are peri menopausal and suffering with the symptoms you have to be given access to HRT x

[Sarah2901 in reply to Nikkky]

Hello, how are you doing now? Im in the same boat now, i think my consultant wants to put me back on the zoladex but now with hrt , I was previously in it for 9 months without the hrt. I hope your doing a bit better !

[G3miniStar in reply to Sarah2901]

Hi Sarah, thanks for the message. I'm afraid 18 months down the line and feeling the same despite being off Zoladex for over a year. I'm now being investigated for Addison's Disease because my Cortisol level is low, but I had to fight so hard for it and basically show my GP the NICE guidelines for Chronic Fatigue before he would do it and I've had to go private for an endocrinologist - honestly it's been a year in hell feeling like a zombie every day not being believed or told to 'just get used to it' and now my endo is coming back too.

I was told by the endocrinologist that messing with hormones can increase chances of autoimmune disease, especially if like me you're already predisposed. Have they checked your thyroid, cortisol and gluten tolerance? All can be wonky due to constantly imbalanced hormones from endo treatment x

[635703]

Please look here for guidance and they offer an 8 week educational course. Listen to the testimonial info. She has great reels up on Instagram and you can lay down and rest and listen to the podcasts.

Lots and lots of love 💪🏻💛 You got this EndoWarrior and your EndoSisters are here 😘DM’s are open if you need a Sister x

This is a screenshot of a Podcast for The Endo Life with Jessica Dudffin.

[evilpunkypie]

They should give you hrt I'm the same age and have had 4 prostap injections upto now..along with tibolone..I didn't even have to ask about hrt the consultant just gave me a prescription for it x