Decapeptyl/ hrt: Hi all just wanting to ask... - Endometriosis UK

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Decapeptyl/ hrt

Smiley2022 profile image
26 Replies

Hi all just wanting to ask a question

I have an appointment next week to start Decapeptyl injections

My question is should I start the hrt the same day as my injection or is it best to wait a few weeks or even the following month ?

Thanks

Tina

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Smiley2022 profile image
Smiley2022
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26 Replies
Moon_maiden profile image
Moon_maiden

I had Zoladex but was told t wait two weeks before starting HRT and to carry on two weeks after.

Hope it helps

Smiley2022 profile image
Smiley2022 in reply toMoon_maiden

Hi Thankyou so much for this information

I haven’t been told anything

I will wait two weeks before starting the hrt

Tina x

Moon_maiden profile image
Moon_maiden in reply toSmiley2022

It’s worth double checking with who gives the injection. There is a a a lack of info a lot these days.

I hate needles and used to use Emla cream to numb the area first.

🤞 for you that it helps

Smiley2022 profile image
Smiley2022 in reply toMoon_maiden

Hi thanks for your reply , I’ve had the injections before in 2022 , the needle doesn’t bother me luckily , I more worried about having a flare up as I recently had one that lasted weeks

I’m having the 3 monthly injections this time instead of monthly so not so many injections this time round 👍

Tina x

Moon_maiden profile image
Moon_maiden in reply toSmiley2022

🤞 for you, really hope it works 🙂

Lindle profile image
Lindle

The official guidance is to take it from the same time but after the injection there is a surge of oestrogen before the ovaries shut down which can last two to three weeks. So it’s best to delay until after that. You might get a flare in pain and a bleed.

What day of your cycle are you having it as it should be in days 1 to 5?

Smiley2022 profile image
Smiley2022 in reply toLindle

Hi yes I read about the surge of estrogen to start with that’s why I was worried as I don’t want to risk a flare up

It will be day 5 of my cycle

Thanks

Tina

endowarrior12 profile image
endowarrior12

I’ve been on Decapeptyl for over 2.5 years so any questions I’m happy to help. My HRT started the same day as first injection x

Smiley2022 profile image
Smiley2022 in reply toendowarrior12

Hi thanks for your reply

Did you have a flare up of symptoms with taking the hrt straight away or were you okay?

Tina x

endowarrior12 profile image
endowarrior12 in reply toSmiley2022

The actually injection can cause a flare up initially but it doesn’t last long. The HRT helped with insomnia and hot flushes. I was given tibolone at first but then changed to estrogen patches and progesterone pills and they helped a lot more. I think everyone’s different so it’s just finding the right HRT for yourself x

Smiley2022 profile image
Smiley2022 in reply toendowarrior12

Hi that’s what I’ve been prescribed estrogen patches and utrogestan pills

Thanks x

1Poppy1234 profile image
1Poppy1234

I haven't had any hrt with both my six month courses but have struggled. I've been reading about tibolone after a post on here as it doesn't contain oestrogen and I think that should be better with the endo adeno.

Pureunicorn profile image
Pureunicorn in reply to1Poppy1234

That's what I was on when having the injections and still am now after a hysterectomy x

1Poppy1234 profile image
1Poppy1234 in reply toPureunicorn

Does it help? I get hormone related migraines awful and I think it's probably the oestrogen. Bit bothered it will make that worse?

Smiley2022 profile image
Smiley2022 in reply to1Poppy1234

Hi 1poppy i had the injections last time without hrt but really struggle with menopause symptoms

Tried tibolone for the last month of injections but Made me feel worse

X

Pureunicorn profile image
Pureunicorn

Hi Smiley2022,When I was on it they said to wait 6months before starting the HRT but that was over 2yrs ago now, I would ask when you go for your appointment, good luck x

Thistlegirl49 profile image
Thistlegirl49

I wasn’t given HRT at all due to severity of my endometriosis. I began it approximately 4-5 months after finishing injections. I was hoping it would counter the joint and muscle pain as well as overall debilitating fatigue.

In hindsight I think I’d rather have taken it sooner, but my situation was a catch-22 as it would most definitely have caused flare ups, which had been constant until the injections. I came off Decaptyl after five monthly injections because I simply couldn’t tolerate the above side effects and was miserable. It was a good decision for me.

I hope both work well for you & take the advice of your consultant re the HRT, call them back if you were not given specifics at your last consultation.

Smiley2022 profile image
Smiley2022 in reply toThistlegirl49

Hi thanks for your reply

I know I need to start the hrt at some point because I got bad menapuse symptoms last time as I didnt take the hrt with the injections

( severe fatigue , my whole body ached so bad and also my mood started getting worse)

I was sooooo miserable too 🥲🥲

Think il start hrt a couple of weeks after the first injection

Thanks

Tina x

Thistlegirl49 profile image
Thistlegirl49

I forgot to say I’m on the lowest dose of Everil Conti (Bio specific HRT) - only two periods in six months 👍🏻

Smiley2022 profile image
Smiley2022 in reply toThistlegirl49

Hi again

Just a quick question

How are you controlling your endo at moment ?

Iam waiting for a hysterectomy but the waiting list is 18 months 🥲🥲 and I’ve only been waiting 4 months 😡

So feel I need to be trying something whilst I’m waiting

X

Thistlegirl49 profile image
Thistlegirl49 in reply toSmiley2022

I had an emergency appendectomy in May 2023 and some symptoms have been alleviated by that being removed. Apparently I had endometriosis on the outside and inside of my appendix which is only detectable after removal/dissection. I didn’t know I had endometriosis until then, but suspected it for years.

I am unable to have a hysterectomy due to the high risk of needing a colostomy. (Multiple lesions on my bowel.) Surgery would involve resecting my bowel in multiple places which is impossible. They can only do one resection. I was told surgery would need 3x Specialist teams, gynae/kidney & bowel surgeons. So for now it’s a wait and see approach and will only have a hysterectomy and bowel surgery if absolutely necessary.

I manage flare ups & pain with buscopan, peppermint capsules (for nausea) omeprazole & Naproxen and eat a limited plain diet when they occur, e.g Toast, rice, crackers which works for me as gluten isn’t an issue for me. I have also learned foods to avoid. Individual symptoms vary widely and are aggravated by different things depending on where their endo is and if there’s bowel involvement.

Smiley2022 profile image
Smiley2022 in reply toThistlegirl49

Hi so sorry you can’t have a hysterectomy

You have a lot going on inside 🥲

Glad your managing it the best you can 👍

I’m hoping when it comes round for my hysterectomy that things are straight forward !! I have no idea where the endo has latched itself onto ?

I might wait all this time and not be able to have one !!

Guess I will just have to wait and see 🤔

Do u take progesterone aswell? Or just estrogen

How old are you if you don’t mind me asking ?

Only asking because I’m wondering if things will settle / stop when you’ve gone through menopause 🤞🤞 x

Thistlegirl49 profile image
Thistlegirl49 in reply toSmiley2022

I just turned 50! If they booked you onto the waiting list and you’ve had an MRI & or laparoscopy already, they will know what to expect, try not to worry. My situation is unusual.

Decapeptyl put me into an artificial menopause, but I’ve not gone through menopause fully yet, ultrasound showed I still had reserves prior to starting the injections & that’s proven true now.

Prior to HRT I was taking a progesterone only pill every day, then Incontacted the specialist team for advice & asked for HRT to combat joint/muscle pain, however that could just be part of the decapeptyl side effects shutting down oestrogen.

I was intially advised against HRT because it could exacerbate the endometriosis. I’ve had one bad flare up & bleeding after the first six weeks of HRT. Which was expected. I’ve been taking Everol now for about 4-5 months.

Best of luck with your op.

Smiley2022 profile image
Smiley2022 in reply toThistlegirl49

Hi , I’ve not had an mri scan and my laparoscopy was in 2018 , so quite a while ago

I’m 50 in January next year , not gone into menopause yet either

Il try not to worry 👍🤞🤞

Thanks

Tina x

Smiley2022 profile image
Smiley2022 in reply toThistlegirl49

I’ve been prescribed Everol 50mcg patches twice a week and (utrogestan 100mg to take continuously ) x

Thistlegirl49 profile image
Thistlegirl49 in reply toSmiley2022

I’m on 30mcg as my surgeon feels I may not tolerate higher doses, also changing patch twice weekly.

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