zoladex help: hi all. I was only diagnosed... - Endometriosis UK

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zoladex help

Lmk72 profile image
10 Replies

hi all. I was only diagnosed with endometriosis last year after at the age of 51 after a hysterectomy 6 years ago. Retained ovaries.. Although I always suspected I had it due to my horrendous periods.. I started on Zoladex in January this year which I have not tolerated well which I have recently stopped after 5 implants as my Blood Pressure has been very high and my bloods show that I have a low white cells count Borderline cholesterol levels… I have a healthy lifestyle and BMI ….just wondering if anyone else has had anything similar. My GP /Gynae seem to think it may be because of Zoladex It maybe that it works wonders for some people but just not me!!

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Lmk72
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Moon_maiden profile image
Moon_maiden

Hi

Pretty similar, I was diagnosed in 2020 at 51, suddenly in 2019 everything went ballistic and pain everyday. I was diagnosed after being gaslighted by GP for a year and going private. He knows I haven’t forgiven them for that yet 🤣. Once I’d had first lap I went on Zoladex and it pushed my BP up as well. Had hysterectomy later in 2020, and three ops since for adhesions, gallbladder and appendix. Pretty sure I’ve probably had it since a teenager due to monthly symptoms but ignored it.

How are you feeling at the moment?

Lmk72 profile image
Lmk72 in reply toMoon_maiden

I was due 6th zoladex last Friday which was stopped due to my BP being so high. But zoladex hasn’t agreed with me since the first one Works for some not for others ! They can’t operate on me as it would be complicated due to previous abdo surgeries and ovaries are now “kissing ovaries “ and are posterior Pain management for me but definitely no more zoladex My BP has been as high as 222/134!!! On hypertension meds now Not nice that you are going through the same but nice to k ow someone that understands 😊

Moon_maiden profile image
Moon_maiden in reply toLmk72

Zoladex didn’t agree either but I stuck with the six just in case 🤦‍♀️😂

You must have a lot of adhesions as well, have you got fibroids? I had those as well, made surgery complicated for hysterectomy.

You should find your BP starts to reduce once the hormones are out the system, that was very high. I stopped the BP meds when it eased, don’t think GP associated one with the other at the time, took me a while to realise.

Have you found a painkiller that works? I try not to resort to Oramorph but do most days. I take Duloxitine, paracetamol and sometimes with use Diclofenac or take naproxen.

Here if you need to chat. 🙂

Lmk72 profile image
Lmk72 in reply toMoon_maiden

Thank you so much. I had an emergency section with my youngest and abdo hysterectomy so lots of scar tissue along with endometriosis so my gynae things ant op will be a huge risk. I am trying to find the best pain relief but nothing seems to take it away completely and some days are unbearable.

Moon_maiden profile image
Moon_maiden in reply toLmk72

I know the feeling, I’ve tried everything I think, pain clinic say they can’t offer anything else and won’t attempt nerve block to the abdomen.

Keep trying you might get lucky, be great if you do find something 🙂

Sunset-lady profile image
Sunset-lady

Morning. I'm very similar. Diagnosed at 50 after a failed hysterectomy due to stage 4 endo. I'm on zoladex every 9 weeks as it runs out. My cholesterol has gone up - it was quite high to start with which makes me think it was something to do with my thyroid and perhaps my gut microbiome. I try to take very little estrogen now and higher progesterone (natural utrogestan) and zoladex is working for me as I hemorrhage constantly without it. They don't want to operate as it could result in a stoma bag so zoladex is the treatment plan until menopause. It has completely changed my life - I'm very tired a lot of the time and I know the bleeding for 2 years has taken a toll on my mental health. It's mad that there is nothing else on offer for this disease.

Lmk72 profile image
Lmk72 in reply toSunset-lady

Pleased zoladex is helping you. It’s been horrid for me My cholesterol has increased and is now upper borderline ( also underacti e thyroid) and my white cell count has dropped Since starting zoladex I have had an infection 10 days after each implant so knew it didn’t suit me from the beginning and my BP was very high Still hypertensive but it’s slowly coming down. I do think that we should be made aware of side effects as some are quite horrid And it is quite a strong drug to take although it does help others. Good to be able to chat as sometimes you think you’re going mad!! Endo is definitely a hard one to have I just remind myself in the bad days how lucky I have been to be able to have children when others that have it struggle or can’t

Sunset-lady profile image
Sunset-lady

Your underactive thyroid was probably there to start with. I'd read about it. Look into estrogen dominance x

Lmk72 profile image
Lmk72 in reply toSunset-lady

I’ve had an under active thyroid for 11 years But endow was only diagnosed last year after a scan found 2 endometrioma s and endometriosis. Radiographer was shocked that it had not been detected when I had my hysterectomy !!

Sunset-lady profile image
Sunset-lady

Yeah the more I read about thyroid the more I see how it's all connected x you were lucky they could do your hysterectomy x

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