Zoladex- what to expect- will it ruin chr... - Endometriosis UK

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Zoladex- what to expect- will it ruin christmas?!

Hi Ladies,

I've just posted a long one about what's going on for me so I'll keep this brief as I'm just looking for some advice/info for starting on Zoladex. I have an unusual situation- it's possibly a mix of endo, cysts, fibroids and some other weird stuff they're not sure of. I'm getting surgery in a few months to have a look and to remove what they can. It was suggested that I go on zoladex while I'm waiting for surgery as it might help my symptoms but it could also help with surgery as it will shrink things and reduce any vascular risks.

I get my first injection next monday, which will be mid cycle for me- is this ok? I've not been told it's to be taken at a specific time in the cycle.

I'm also not sure what to expect. My periods are not an issue at all- I have light, short periods (sorry for those who have it bad), I'm expecting these will just stop. My main issue is extreme fatigue and back pain, I also have abdominal/pelvic pain. I have been told I can take a low dose HRT but will need to stop this a month before the surgery, so part of the time will just be full on menopause.

I'm just wondering how quickly will I start to feel the menopause symptoms? I'm a bit worried I'm going to be a sweaty, raging hormonal mess with a headache at christmas! Are the symptoms constant or is it like a flush that is intense that passes? I've had some pretty brutal hormonal headaches over the recent months while I've been ill and they've been really bad, for those who've had headaches, are the lifted with the HRT? Does anyone have any advice for how to make it more manageable?

Thanks!

13 Replies
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Hi Weekari

What a position you are in, damned if you do and damned if you dont.

My interpretation of my hrt effects on me (combined patch evorel conti both estrogen and progesterone) being a person who could take a migraine at the drop of a hat, the constant supply of hormones ie no dips no peaks has had a really phenomenally great affect on my headache scenario..a steady supply has been amazing for me, really put mine to bed.

Post hysterectomy unfortunately I was feeling insomnia and sweats (like a cold sweat over me) and mentally unhinged just 24-72 hours post Op so STALKED my GP for the prescription my endo surgeon had written me.

Some people are really hormone sensitive and I felt like a rabbit in the headlights and "not covered" by the blanket of hormones that I had pre surgery.

Everyone is different but if your a headachey person you will undoubtedly be hit when that last month comes when you have to be hormoneless pre Op.

The thing is, if your surgery is booked you should probably go ahead in terms of shrinkage to try the Zoladex as your case seems to be one where those nasties could benefit from a zap, my endometriosis wasnt detected on MRI in May 2017 ahead of my 2018 hysterectomy whereby I was riddled with it. As I was having "it all" out the surgeon afterward assured me the surgery was made essier for him hence not having to shave ovaries of endometriosis in an attempt to keep my ovaries etc. If anything can slough away at the growth, bulk, sheer mass of these nasties go ahead and do it for a better surgery outcome.

Remember how intricate it is in there and all the ligaments amd blood vessels etc, give your surgeon the best chance!

Put a sign around your neck at Christmas Im wearing my "Bah Humbug" hat and people can know to stay well clear of me whilst I get my thyroid and hormones sorted out.

You will need a wide birth.

Hormoneless if you are similar make up to me will be tough on you and those around you...buy hey ho there is ALWAYS wine Weekari!

Lots of love

Helly xxxx

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Yes I'll definitely be self medicating with wine! 😂

I thankfully don't seem to be too sensitive to hormones. I used to bio identical progesterone cream for 3 cycles and it was a fairly subtle effect on me, whereas I know other women can have a huge effect. That's when I experienced headaches, which I have never really had a problem with in my whole life. I only had them for the first 3 days of each cycle as my body adjusted to the increase in progesterone. Hopefully it will just be something like this but I have been worried that I would have headaches the whole time. When I have taken the contraceptive pill in the past, I haven't had any render side effects from that either, so hopefully that means I am not too sensitive and I won't be too bad. I have to be hopeful! I know that I can't take a high dose of HRT, as that will take away the benefits of me using the zoladex . I think it is just to reduce some of the worst side effects.

I'm just hoping it's not horrendous as I I think it would be beneficial for my surgery, to make it easier for them to remove things and give me a better outcome.

I'll soon find out I guess!

Xx

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Hi Weekari,

I had the injections for 3 months and the side effects did not kick in for me for the first month so fingers crossed it is the same for you and you get to enjoy Christmas :-) xx

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Thank you.

Do you mind me asking if you took any hrt?

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Hi, can I ask where you heard about starting the Zoladex at a particular time? Is this true as I started it on day25 of my cycle X

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Oh, I'm also not sure about this either. No one has said if it should be started at a particular time, that's what I was asking. I'm assuming it can be started any time as its not been mentioned. I'll be on day 17 when I start. I'm sure they would say if it was meant to be at a specific time. Surely?

How had it been for you so far?

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I thought it was a bit odd to start before the period as the lining would just be there (mines really thick). But I guess they know what they’re doing *hoping* . I’m just having chills from time to time. Goose pimples and just feel like I’m cold all over. So hard to describe. I’m on Tibolone too so maybe that’s counteracting the side effects. The doc said it builds in your system, so the first month isn’t probably going to be as effective and the following month. Let us know how you get on x

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I know, we do just need to trust that they do know! 🤞🏻 😂

I was told the first week can be hard as the body initially produces more estrogen to try balance it before the ovaries stop producing it and its like week 2-3 before the more menopausal symptoms will start but hopefully with the hrt that won't be so noticeable. I'll be taking it too. It's daunting!

I'll definitely post about it. I don't really have any friends to talk about this with so sharing on here keeps me sane!

Good luck!

Xx

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I didn’t know that, thanks I’ll brace myself for that then lol... Xmas.

This group has been my only outlet and great way to learn. I’m the same and family don’t really understand. Thanks for the luck, you too xx

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Hi Weekari,

I’ve been following your posts and I’m so glad you’ve at least got a plan of action now with some experts and will hopefully get to the bottom of all this.

You remind me of me!! In that you will throw yourself into finding out information and natural treatments.

I’m also about to start the natural bio identical cream in the next week or so (although from what I’ve read on your journey you stopped that due to headaches etc) I’ll have to wait and see how I get on with that as I do get hormonal headaches on and off now myself. I’ve also reduced toxins around me by buying natural household products etc and take supplements including cbd and like yourself I have noticed a great improvement with the cbd.

I do understand that due to your unusual situation it’s not always feasible to stay on the natural treatments path, and I think your doing the right thing by having a diagnostic lap first before making your decision about what surgery you may need after.

My last surgery was nov 17 for stage 4 endo to be excised, but it has come back and the treatment they have offered me is hysterectomy/removal of ovaries and endo excision. Prostap/ or coil. I have declined all for now and asked for an mri scan of upper and lower (as I now suspect it has spread to my diaphragm as well) I have mri booked in for 20th Dec. My plan is to continue with natural cream /diet/supplements:reduce toxins for now and give it 3 months. But like you I suppose depending on mri etc I may have to have surgery again especially if it is in the diaphragm.

For headaches, have you had a look on you tube at some of the points in the body that you can apply pressure on to reduce headaches....I’m not sure what it’s called but worth trying maybe. Apart from drinking plenty of water, I don’t really know what else to suggest on that one.

I do hope the Zoladex doesn’t cause you too much probs, I’d imagine it will take a few weeks to kick into your system so you should be ok over Xmas at least. X

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Thanks for replying. We do sound quite similar! 😊 I've really tried with the natural approach and wanted to avoid a medical intervention but it was after reading my medical notes and seeing they've not been sure if it's cancerous that I thought I needed to step things up. Crystals and veganism are not going to be enough! After having my mri explained to me, I can see that it's gone too far now. The masses in my pelvis are huge and the consultant doesn't know what they are. They've pushed my uterus right over to the left and it's sitting horizontally, it's bizarre.

I'm still doing lots of natural things-I'm now on to drinking a half pint of juiced celery every morning. It's supposed to cure all ails! 😂 I am a trier! I hope that once they do whatever they need to do surgically, that my lifestyle will help me heal and keep me from getting too sick again. 🤞🏻

I was continuing to use the cream but only stopped because I'll be doing the chemical menopause. My headaches weren't too bad. Well, they were bad but only lasted a few days, when I started the cream each month. Other than that, I didn't really feel the cream did anything. It may not have been a good quality cream or something? I've had my estrogen and progesterone levels retested but don't have the results yet so that may shed some light as to whether the cream was actually doing anything.

I really hope the cream is effective for you. It sounds like you've had so many interventions, it can totally understand why you'd want to try this before going down a more surgical route. Are you being seen in a BSGE centre?

That's a great tip for YouTube videos for headaches. I'll have a look. Thanks!

Xx

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You certainly are a trier I’ll give you that!!😀.

Hopefully it’s a large cyst or something that they can remove and not cancerous. They won’t know for sure until they get in and have a look I suppose. How awful for you though to if gone through all that and only found out by reading your notes!! I really don’t have much trust in doctors these days I have to say.

Yes I think that’s a good plan what your doing with the experts and then once/if you have surgery, you can then keep up the natural side of things to help keep things at bay. ( that’s exactly what I’ve been telling myself if i have to have more surgery)

I did go private last time and went to BSGE centre this time.

I was amazed at how many illnesses are caused by inflammation. So the supplements I take and certain foods etc all help control it.

Thank god you complained eh!!..... I’m sure you’ll get through all this now, your finally getting somewhere, one day you’ll look back and be a much stronger person.

I’ll keep my fingers crossed for you and keep a lookout for your next update. X

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I have had 4 zoladex for stage 4 endo.

The injection is not a problem at all as I use a topical cream to numb the skin a few hours before.

My nurse is fantastic!

My consultant advised me to use hrt patches to control the side effects which has really helped.

I am hoping that the endo will have improved as last treatment on 21st January.

My husband was very supportive and asked me to give it a try for a month and if I didn't like it discontinue it.

It was the best advice.

Please do what you feel is right and works for you.

Wishing you good luck.

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