Norethisterone after a hysterectomy

Hey lovely ladies,I was wondering if any of u after having a hysterectomy due to endometriosis have had ther hrt doubled in dose every second day(elleste solo 2mg,every 2nd day 4mg)and also been given norethisterone 5mg one tablet a day,if u have how have u been on it has it helped or made things worse? So far all I can find is women been given the norethisterone to help stop bleeding continually or before something like a holiday&sane as iv had a hysterectomy taking everything I dont bleed&when I looked up women&hrt only find one's who have changed to a different hrt but not ones who have had ther dose put up...hoping someone has had this before after a hysterectomy&to treat endometriosis&lol hope I'm not the only one this time

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  • Hi - as far as I am aware estelle is only available as 1mg and 2mg so are you are you being given 2 x 2mg every other day? The usual dose is 1mg with 2mg for women with risk factors for osteoporosis, but ultimately the actual serum levels of oestradiol are what matter. So what are your oestradiol levels?

    I haven't come across a progestin being given for women after TAH and BSO as it is given to those with a uterus to protect against endometrial cancer. Combined HRT has a higher risk for breast cancer than oestrogen-only so as far as I am aware it would normally not be given.

    As we know a hysterectomy is not a treatment for endo unless all other treatments have failed unless the uterus itself is diseased which I assume to be the case and the important factor is that all endo was excised at the same time.

    But back to the estelle, I don't know why they are giving you such a high dose but assume your oestradiol levels are within reasonable limits which should be under around 400 pmol/l.

  • The hospital recommended me to take a combined HRT after my hysterectomy. I'm not saying they were right though. I was on tibolone already so stayed on that. The registrar I saw pre-op said that tibolone wasn't the best after a hysterectomy and I'd see someone post op to discuss what would be best. I didn't see someone until I was getting discharged, they recommended combined HRT on my discharge sheet. The the HRT nurse phoned me at home and when I said the discharge sheet said combined HRT she said the tibolone I was on would fit that so if I was having no problems it would be best to stay on that. My GP who is also a gynaecologist also seems to think tibolone is fine.

    I know that tibolone is broken down by the body into the progesterone and oestrogen rather than being two different hormones to start with.

    So it seems the medical profession is a little confused on the matter!

  • Hey NW248,thanks for ur reply...yep would seem a lot still don't kno everything they should&that we end up knowing more than them.iv had tibolone before when was on zoladex injections&both were a nightmare so hopefully ur ok on it or find something else 2help,iv been on elleste solo 2mg since my hysterectomy almost 2years ago but was still really unwell&in loads of pain so had another laparoscopy in sept&they found Endo so last week was my appointment after bein discharged&said if I wanted try takin 2 hrt tablets every second day&1tablet on other day&then also 1norethisterone 5mg tablet a day so lol we shall see how that goes as nothing else has ever helped

  • Hi lindie,thanks for ur reply...i had my hysterectomy almost 2yr ago&have always been in pain&unwell since I was put on elleste solo 2mg a day straight away&cos was still in lot of pain&unwell they done another laparoscopy Sept&found Endo on vagina wall&outside of bladder&adhesions 2the left including the bowel,since then its the same old story nothing changed still in pain&unwell so at my follow up appointment he suggested if I wanted 2try 2x elleste hrt tabs every second day&on other day jus take my usual one tablet(been 2mg a day since hysterectomy) but also on top of that take one norethisterone 5mg tablet a day as well but when I tried lookin up info couldn't find anything of this for after a hysterectomy but lol don't mind tryin something new as long as it doesn't make me worse

  • This sounds very much like me. After I had my hysterectomy and ovaries out and was unwell on HRT they upped the dose on some strange assumption that my oestrogen levels were too low but it just made me worse so they kept upping the dose. But this is ridiculous when they know you have such extensive endo left in. The reason they have you on a progestin will be to try and counteract the effects of the oestrogen on the endo but doubling the dose will just feed it more. They are just stabbing in the dark. Have you had your oestrogen levels checked since the hysterectomy as it should be checked at least every 6 months. If not it is important that you get it checked - your GP should already be doing that. But with the endo you have in the places you have a hysterectomy was never going to cure it unless it was thoroughly excised at the same time. You need referral to a specialist endo centre - click on my name and have a look at my post on how to find one. x

  • Yeah lindle think cos I wasn't expecting him 2say something like that I was actually thinking he was gonna say have atrial coming off hrt altogether but I kno I'm too young for that(40 soon) but wasn't till I got home I started thinking like u said would this not jus add 2it&make it worse again&it was only ablation they done in Sept but had 2laugh when one of the docs said hopefully u get some relief for up to 3years lol I don't think iv ever had any relief after any laparoscopy never mind 3yrs 😳😂 and only blood test I usually end up with is for my iron levels cos ever since I was young they'v always either been really low or said was anemic but iv never been told I should have blood tests after a hysterectomy for oestrogen levels so thanks for letin me kno that i'l phone my docs&get that arranged.i looked a while back but couldnt find a specialist in my area but the consultant I see does specialize in Endo but dont excise they only do ablation xx

  • Hi - any gynae that ablates what they can, leaves the complex stuff in and then says it will shrink away after a hysterectomy whilst giving you double dose oestrogen replacement is not a specialist in endo. Doesn't it sound awful when put like that? All gynaes call themselves 'specialists' when they probably did half a day on the topic at med school. Excision specialists do a minimum of 2 years' advanced training. Wherever you are in the UK the requirements are that you must be seen in a specialist centre. What area are you in?

  • I am on kliovance which has 1mg estradiol and 5mg noresthisterone and I find this great..my hot flushes are away and so is the weepyness I had the first week..it's all going brilliant I'm even being brought down to a really low dose of the antidepressant I was on before! You really shd maybe query as to why you have to up your dose every two days..have you had many hot flushes and how are you feeling after the hysterectomy? X

  • Hey Caroline81,thanks for ur reply...aww so glad 2read this lol really was beginning 2think I was the only one tryin something like this&glad ur tablets are working well for u&managing 2get down a dose on ur antidepressants too...not had too many hot flushes but still been in loads of pain&ill since my hysterectomy almost 2yr ago so had another laparoscopy in Sept wher they found more endo&adhesions so this was all suggested at my follow up appointment last week,i'l see how I go fingers crossed it works lol will celebrate if it does cos will be the first thing that ever has worked since I started havin problems from 12yr old

  • Awe I'm sorry to hear your still in pain with it all..I know that a hysterectomy doesn't cure endo but I'm hoping I get a break for a while at least..I've changed my diet and I actually have started meditation just to relax me..I'm going to try to take more herbal remedies for things as I don't want to take tablets..I'm only on hrt and a low dose antidepressant and I really don't want anything else going into me after years off drugs...but I really hope this starts helping you!!! Sending you my love and hugs xxx

  • Thanks Caroline81 yeah I was the same had tried everything&this was last resort in hope that it would at least calmed the pains down&knew before even bein offered it that a hysterectomy isn't a cure but most people that read abt all say lots of positive things abt havin ther hysterectomy's&dont regret it at all so lol don't let me put u off&like we all kno everyone is different in how they respond to different things.thats good that ur tryin lots of different things to try&help u&hope they all work for,yeah its not nice feelin like ur always takin medication&that they have some sort of horrible effect on so sometimes nice to get a break from them all...aww thanku 💞 hugs for u too&hope everything works out for u too xXx

  • I've talked to a few girls who had the hysterectomy and it has helped them and also like yourself hasn't.. so I'm hoping that it helps me too and I just get a break..but I really hope things start to get better for you..xxxx

  • Your issue is not really to do with what hormone medication you are on but about having been treated inappropriately for your endo. You have severe endo that was not excised and a hysterectomy was never going to treat it. Taking HRT can only make matters worse. You are being treated against NHS protocol and need to be referred to a specialist in the condition in a BSGE centre for excision of the endo.

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