Hi i had a full hysterectomy about two yrs ago, went onto Tibilone HRT, the pain got progressively worse, so my gp said stop taking the HRT for a while to see if pain reduces. I have been off HRT for a month, and only had 3 days of pain, which is great! However the menopause symptoms are bad and I am not sleeping , hot and dehydrated can’t have sex, due to the dryness. So I wondered if anyone found a HRT type of solution that didn’t affect their Endo? I am desperate for help, if anyone can give me some hope
Thank you
Sarah x
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SarahLouise12
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It could have been me writing that post! I had a total hysterectomy about two years ago, kept my ovaries, but the Endo came back only after a few months so I had to have them removed last November. Like you I started taking Tibilone, unfortunately I now have pelvic and lower back pain again.... so frustrating. I was advised to stop taking Tibilone (making my menopause symptoms worse again too) and to go see my GP in case there is any underlying issues first, I’ve got my appointment this morning. I’ll keep you posted how it goes and if I’m prescribed another HRT!
Anyway hope you’re having a good day, and sorry it’s not a helpful reply, but you are definitely not alone with this (seems like) never ending problem.
Hi thanks so much for your reply it’s nice to know I am not alone, I went to the doctors this morning and she has suggested I take a low dose of HRT and see how that goes, I will keep you posted! How did it go with your GP?
Hi, it went ok at my GP’s thanks, she has suggested I have some bloody tests just to rule out internal infection (maybe from my surgery) but it is likely some endo might have been missed ☹️ and since the pain is there while I’m taking or not taking Tibilone she told me to start taking it again, I’m 46 and like you need it to help with my skin, bones etc!
Glad you got sorted at the doctors too, tho I have a friend who’s 52 who also recommends patches over pills like the other reply mentioned. It’s all about finding the best prescription that works for you, so good luck.
And I know what you mean about pressure on your marriage, if it wasn’t bad enough we couldn’t have children because of my endo, I’ve now got to tell him the pains back again, I’ve been struggling to tell him how bad the pain is, especially as we both thought this nightmare was over.
Fingers crossed we all find the right way to handle it.
Take care, and please let me know how you get on with the HRT xx
It's so hard finding a balance isn't it? I found that if I used the patches at a very low dose and very slowly increased the does I was able to tolerate the HRT and it stopped the pain from flaring too bad. The problem is, depending on your age it's very important to take the HRT so you don't want to spend too much time off it. Good luck xx
Thank you so much the doctor has given me a low dose of HRT prescription today, I opted for the tablets version, just waiting for them to come in stock from the chemist! Do you think the patches are better Yes it’s such a fine balance isn’t it! I am so glad that this month I only had 3 days of pain as opposed to 2 weeks! So it’s trial and error! I am 50 and my bones have been weak due to long usage of Zoladex ! It’s so good to hear from someone who has been through this as it feels so isolating and puts a lot of pressure on my marriage !
I'm glad it's not just me. I feel this year has put tremendous strain on my marriage. It's so difficult and sometimes you feel like you're spending your life feeling guilty for one thing or another.
Oh my goodness the patches are a billion times better. Are you in the UK? I believe they always start you on the pills as they are so much cheaper. I found the pills impossible to tolerate. I would be sitting and all of a sudden I would just start wretching - it came on just like a sneeze. After a short while I was moved onto the patches and got on so much better with those.
I started with a very low dose and very gradually increased the dose. As I'm in my early 30's (was late 20's at the time) it was deemed important I was on the highest dose of HRT to protect my bones, heart etc. Once it all settled, I found that I got a lot of relief. Looking to go back onto decapeptyl soon.
Thank you it’s such a strain and you are right, I feel guilty about the pain, the hormones and my drop in libido since I was put on venafalaxic an SNRI to deal with mood swings and anxiety brought on by sudden menopause! It’s a never ending process to find the right balance - good luck and thanks for your reply xx
Hi Sarah! I had a full hysterectomy in Sept 2019. I’ve been on HRT patches which have been great. The ones which have agreed with me are Elleste Solo Mx 40. My understanding is that patches are better for migraine sufferers as a steady release of hormones. I get the odd migraine but no Endo pain. Good luck xx
It’s good to be able to read other people’s experiences.
I was put on Estradot 50 microgram patches 4 weeks ago. I’ve just had to come off them as it increased my cramps to a severe level on a continuous basis. Cramps easing off now that I’ve stopped the patches (on Friday). Felt terrible phoning my GP on Friday for advice, given the pressure on them just now, but the pain was so bad I needed to get advice if I should just stop them!
Has anyone else been on these HRT patches? I’ll hang off getting further advice from GP/gynaecologist until the world gets back to some normality!
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