HRT AFTER HYSTERECTOMY : Hey all, About... - Endometriosis UK

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HRT AFTER HYSTERECTOMY

fdennis07 profile image

Hey all,

About 3 months ago I had major excision surgery for my endometrios which involved a full hysterecomy (with ovaries removed) and a bowel resection. I have a temporary ileostomy at the moment so will be having another op in a few months time.

I have been on Tibolone for about a year now as was on it with Zoladex as well. I get on really well with it but have been having quite a bit of hair loss. My consultant had written to my GP to recommend I try Evorel 50 patches but this is an oestrogen only HRT...

I have been under the impression that with endometriosis you should have a combined HRT in case any has been left behind (I have stage 4 and quite severe- they think they got all of it but there is always the risk of trace amounts being left)....

I'm a bit anxious to go on an oestrogen only HRT in case it makes any endo left behind thicken up with the progesterone to help thin it and think there is risk of it turning cancerous also.

Has anyone else had a full hysterectomy and what HRT are you on? How have you found it? Wondering if I should contact my consultant to ask for the combi HRT

Many thanks

Fay xx

55 Replies

Hi Fay hope your recovery is going well. I will be getting a hysterectomy at some point hopefully this year. I wanted to say I am on the Evorel conti patches 50mg and feel a big difference probably from week 4. No night sweats, maybe 1 hot flush a day, feel better about myself in general and a bit more like “me”. I have endo and adeno and my GP never mentioned an issue with having the Evorel conti only. If you find out let us know 😀

Have you got the “balance” app from Dr Louise Newson, it’s great! X

Evorel conti has the progestin in it, so you are getting both. It would be better to be taking Utrogestan though which is the only true progesterone and body identical, you can change to plain Oestrogen Evorel patches and take Utrogestan orally and continuously with it, although the gold standard is Oestrogen gel and Utrogestan, also do ask for Testosterone gel also, it can be the missing link for many women and if you have no ovaries it should be routinely prescribed

Hi. I’m a week post op and have been given everol 50’patches and continuous progesterone tablets (utrogestan) for exactly the reason you state above. The continuous progesterone stops the estrogen allowing any residual endo to grow - this was the advise from the endo team I am under so I’ve decided to follow it. Hope this helps. X

fdennis07 profile image
fdennis07 in reply to Smokey2020

Thank you! I'm so afraid of it growing back after everything I have been through. Think I will call my consultant.

Can I ask what dose of utrogestan do you take? Do you take it every day?

Smokey2020 profile image
Smokey2020 in reply to fdennis07

It is 100mg. Starting at once a day but if my weight increases as it can stimulate your appetite my consultant says can reduce to every other day.

Should have mentioned that consultant advises progesterone until 50 then to stop. I think it’s perhaps that cross over of estrogen only HRT having less risk for menopausal women

Innaminn profile image
Innaminn in reply to Smokey2020

Look into the protective effects and systemic benefits of progesterone (Utrogestan being the only true progesterone) in my opinion the benefits vastly outweigh the risks. I think all women should be allowed to continue it after a hysterectomy, not just those with a history of Endo. Also, I am not sure that the P stimulates the appetite, I think in reality excess O stimulates the appetite especially for carbs and sugar. I had crazy hunger on the O only days until I started taking P continuously for Endo suppression (got my excision and hyster tomorrow). I would actually be interested in taking more than 100 per day, I'm going to see how I feel

I had a full hysterectomy last year and I’ve been told I only need oestrogen and am on Evorel patches which I started at 50mg.

Innaminn profile image
Innaminn in reply to Welf14

No you should continue to take Utrogestan (not synthetic progestins) to suppress any remaining cells. Also, the whole idea that P is only necessary to protect the lining of the uterus is another example of women's health not being taken seriously, there are so many other systemic benefits and protective effects of continuing to take P after a hyster

Guineagirl2 profile image
Guineagirl2 in reply to Welf14

My hysterectomy was 5 weeks ago and I have started Evorel 50 3 weeks ago. My consultant did not prescribethe combo one despite my history of endometriosis.

Hi

I’m almost two years post hysterectomy I’m only 30 so high risk for osteoporosis so needed HRT and I’m on Mylan (Zumenon). For me it’s been amazing as I had awful menopause symptoms after surgery. I don’t get any now. Hoping my endo never comes back as it was so awful and life crippling.

Hey! I had a hysterectomy including removal of ovaries nearly 2 weeks ago and was told to stop tibilone (I was having decapetyl prior to surgery) and start estrogen gel 🤷‍♀️🤷‍♀️I woke up last night in a pool of fresh blood .....is that normal ??

Moonglo profile image
Moonglo in reply to Saliki

Hey Saliki, maybe you should put your question up as a separate post, otherwise it’ll get lost in this thread.

fdennis07 profile image
fdennis07 in reply to Saliki

I think it is normal to have some bleeding after a hysterectomy for a few weeks but should be light (I had some light bleeding for a couple of weeks). Might be best to keep an eye on it or give GP a call to make sure all ok 👌

Saliki profile image
Saliki in reply to fdennis07

Thank you. I was sent to ED and have a scan today . Have stopped bleeding now so hopefully all OK 🤞🤞

fdennis07 profile image
fdennis07 in reply to Saliki

Hope scan went ok!

Innaminn profile image
Innaminn in reply to Saliki

Definitely need to call your surgeon about this to get advice on what to do, if you can't reach them call your GP, and otherwise go to the ER, a pool of blood post hyster should be checked out. Good luck

Innaminn profile image
Innaminn in reply to Innaminn

Also, oestrogen gel is better as it is body identical and transdermal O which make it much safer and also the gel is easier to find the right dose for you as you can add extra pumps if you are still having symptoms (with docs support that is) but you should also still be having Utrogestan and also Testosterone

Hi Fay, you are correct. You do need continuous progesterone as well for the reasons you mention. Ideally micronised progesterone called Utrogestin, as this is body identical. Listen to the podcast on HRT and endo on Louise Newson’s Menopause Doctor website. My g.p was adamant I only need oestrogen replacement as I no longer have a womb. I just knew it was going to cause me problems and sue enough a month after starting it my bowel symptoms returned. I can only think it flared up some remaining bowel endo. I rand my g.p last week and mentioned that I need to be on Utrogestin as I’ve had endo. She immediately recognised the name of the drug as she’d recently done some training and agreed that I need it. The best thing you can do is arm yourself with the facts and tell them what you need. Good luck x

fdennis07 profile image
fdennis07 in reply to Nikkky

Thank you!! I do not want to take any chances with this horrible disease!

Nikkky profile image
Nikkky in reply to fdennis07

So many mistakes are made by health professionals on this issue. I regret not demanding progesterone as I’m in worse pain now. The guidelines have obviously changed quite recently, which is good as long as g.p’s are aware of it. If they say that all of your endo has been removed and you don’t need progesterone, I would question that they can’t be 100% sure they’ve seen and removed all of it x

fdennis07 profile image
fdennis07 in reply to Nikkky

Exactly, we have been through enough already

fdennis07 profile image
fdennis07 in reply to Nikkky

Can I ask what HRT you take and what dose of utrogestin you take (do you have it daily)?

Nikkky profile image
Nikkky in reply to fdennis07

I’ve only just started HRT again 2 and a half weeks ago (so early days still). I stopped taking it for a few months after my pain got worse on the oestrogen only HRT. Unfortunately I suddenly had horrendous menopause symptoms so I’ve started it again. I was prescribed the Estradiol tablet (1mg daily) but I’m just changing to Sandrena gel (as this is a safer than taking a tablet). I’m increasing the dose to 2mg of gel daily. The Utrogestin is 1 x 100mg tablet daily, at bedtime, which seems to be the recommended standard dose

fdennis07 profile image
fdennis07 in reply to Nikkky

Fingers crossed this works for you and your endo doesn't stir up again!

Nikkky profile image
Nikkky in reply to fdennis07

It would be really interesting to hear from women who have had endo and who’ve been on combined hrt for longer. To know whether they’ve improved because of the progesterone or got worse with the oestrogen. It’s so complicated!

fdennis07 profile image
fdennis07 in reply to Nikkky

That would be really useful! There is just so much little information available it is hard to make a decision and then you worry that the one you have made isn't the right one.

Innaminn profile image
Innaminn in reply to Nikkky

So just FYI, I had total hyster and excision of DIE last Saturday with Peter Barton Smith privately and he was happy for me to continue on the same dosage of HRT as prior to the surgery which is 4 pumps of Oestrogel (equivalent to 2mg of Sandrena I believe) and 200mg of Utrogestan, so you may want to consider going higher with the Utrogestan. I also take 1/7th of a sachet of Testogel per day which I highly recommend for energy levels, brain fog, and libido, for many women it is the missing piece of the puzzle that they feel helps them get back to themselves. Interestingly we actually make Testosterone in higher amounts than we do Oestrogen but a lot of people have a block around it, it should be an automatic part of HRT; O, P and T for every woman

Nikkky profile image
Nikkky in reply to Innaminn

Thanks very much for that info. Hope your op went well and you are feeling okay. I have been wondering if I should be on a higher dose of Utrogestan as I’ve just increased the Sandrena gel to 2mg. Think I’ll increase it to 200mg as my pelvic pain has been a bit worse. I’m waiting for an appointment with a menopause specialist so will discuss it with them. Also, did you know that you can use the Utrogestan capsules as a vaginal pessary? It’s used that way in other countries but our health professionals don’t prescribe it that way. It is safe and less likely to cause side effects such as low mood. It is discussed in a podcast on the menopause doctor website. I think the dose is lower if used vaginally though- some women use them every other day. I think I need the testosterone replacement as well but they recommend taking the oestrogen HRT for 3 months before having a blood test for testosterone levels (think that’s something to do with testosterone converting to oestrogen). Wishing you a speedy recovery

Innaminn profile image
Innaminn in reply to Nikkky

Yes, you can use the Utrogestan vaginally but there really isn't any point when you have Endo and no uterus as it only protects the uterus lining when used that way, plus you miss out on the systemic benefits of progesterone. The majority of women will adapt to Utrogestan after a few months as these "side effects" are actually just settling in effects and so not permanent, and often times these symptoms are actually the effects of low Oestrogen (O) as Progesterone (P) "mops up" O and so what women are feeling are the effects of lower available O, not actually settling effects of P. This is why it is better to use O gel and not patches or pills as it is more flexible and so your doctor can supervise you adding an extra pump (or even half a pump) of O when you feel a bit shitty or low which can help you to find the right balance for you. Utrogestan orally is also safe it is the O and synthetic P that you want to avoid taking orally. Lastly, if you are increasing your O then you should probably increase the P due to the mopping up effects I mentioned and the need to suppress Endo. And yes, it is good to have a baseline test for *Free T* done before starting on T

Nikkky profile image
Nikkky in reply to Innaminn

Thank you so much, that’s a great help. I have been trying to find info on whether the Utrogestan is better used vaginally or orally when you’ve had a hysterectomy and a history of endo. I couldn’t find anything on it, so thanks for clarifying. I agree, lots of women seem to blame the HRT side effects on the progesterone replacement but it’s their low oestrogen levels. It’s really quite a change in mindset for me to think of oestrogen as a positive thing when it’s caused me so many problems over the years. I guess we just need hormonal balance and that’s the key. We’ll get there! Thanks again. Take care.

Innaminn profile image
Innaminn in reply to Nikkky

OK great, glad to be able to help clarify that :-) Yes, many women have all sorts of negative narratives about the different hormones which is really unfortunate as our brains are really powerful and so we can muddy the picture with our perceptions. That is why it is important to be familiar with all the science backed positive effects of all of them and to also understand that all new regimes can have some unpleasant and even painful settling in effects (looking at you diet and exercise) but we need to ride these out to give our bodies chance to adapt and often we can have very different feelings later on. I now absolutely love Progesterone, I realised that I wasn't feeling fantastic when on O only before, whereas the combi days I was feeling so much more chilled out which is why I asked to be put on continuous, and then I found out I needed to be on continuous with Endo, and a higher dose and I was delighted. So much better. Anyway, good luck finding your right balance, you will get there 💪☺️

Nikkky profile image
Nikkky in reply to fdennis07

Sorry Fay, it’s actually spelt Utrogestan x

Hi, hope you’re having a good day, I had stage 4 endo, I’ve also had a total hysterectomy and ovaries removed, but I’m still taking tibolone after 20 months! Ive been lucky as my menopause as only been hot flushes, I’m worried now that I should be taking something other than tibolone. It’s interesting reading everyone’s views. I hope we can keep helping each other with advice 🙏🏻 Big hug 🤗

fdennis07 profile image
fdennis07 in reply to bighug

Hey hun, if it wasn't for the fact that I have been losing a bit more hair than normal I would be sticking with the tibolone! I got on well with it whilst on zoladex etc and kept my endo at bay. If I don't get on with the patches, I will be going straight back to tibolone xxx

Innaminn profile image
Innaminn in reply to bighug

Read up on the differences between Tibolone and body identical HRT on Dr Louise Newson's website menopausedoctor.co.uk/ she has tonnes of fact sheets for patients and doctors there. It would be a really good idea if any of you can afford it to see a menopause specialist as unfortunately knowledge on meno and HRT is very poor (Louise Newson is actively trying to change that and doing an excellent job already) and it really helps to get specialist care in this area, especially as it is for life now and what you do now will have a huge impact on your quality and quantity of life. She also is on Facebook and Instagram and she has a podcast, plus she has set up a free charity and created a free app called the Balance app to track your symptoms which can be really helpful for your HCP as well as for yourself to see whether you need to tweak your dosage or not

Sorry I didn’t mention that I’ve also got endo pain symptoms again, not sure if it’s just one of those things where some was left behind, or if any medication made it worse, I’ve been but on the waiting list for another laparoscopy 😔 also having my colon looked at. It feels like a never ending cycle! It’s so hard to know what’s best for all of us. X

Nikkky profile image
Nikkky in reply to bighug

Hi. Can I ask what your returning pain is like and where it is? When my pain returned after my hysterectomy the gynae consulatant said it was from adhesions and there was nothing they could do. I suspected endo was still there and it confirmed it for me when the pain got worse on oestrogen HRT and my endo bowel symptoms returned. I haven’t tried to get this investigated yet as I don’t think I’ll be believed. How did you persuade them to investigate? Last time I tried to get help I was told that it must be a bowel problem. Thanks

bighug profile image
bighug in reply to Nikkky

Sorry for late reply, my pain is mainly in all my pelvic, area and lower back. I was told it could be adhesions too, but after he’d examined my pelvic area he said he would put me back on the waiting list for another laparoscopy but also have a bowel specialist look at me first, I’ve recently had a sigmoidoscopy but the results from that means I need a full colonoscopy now, so I’m not sure what the findings are which lead to the decision for the colonoscopy 😳 other than a few polyps and some odd dark red areas! I’m hoping it’s all normal 🤞🏻 Not got a date for the laparoscopy yet, I guess they might wait to hear the results from the colonoscopy. I really don’t think they have answers to why we still suffer after having removal of endo and full hysterectomy 😕 I would keep on asking your GP or gynaecologist to investigate your pain, it’s important they understand it’s real and it’s affecting your quality of life. Good luck, let me know how you get on. Big hug 🤗

Nikkky profile image
Nikkky in reply to bighug

Thank you so much for that- any info is really useful. I have central, low pelvic pain, which is odd when I know there’s no longer a uterus there, plus left sided, back and leg pain. It sounds like you are being treated well but I assume you’re under an specialist endo team. I’m so pleased they exist now. Sadly they didn’t exist when I was diagnosed 13 years ago and my last procedure was the hysterectomy in early 2017 (this must have been just before the new protocols re: endo where put in place). As far as I know they didn’t even check for endo during my op, so it’s impossible to get any further with it when my g.p and general gynae consultant think I should be cured. They don’t have a clue. If it doesn’t improve I’m going to self refer to a private specialist. I’m peri menopausal now so hoping that any endo lesions die off. Menopause.....that’s another horrendous experience! Best of luck and hope you get some answers and successful treatment x

bighug profile image
bighug in reply to Nikkky

You sound like you have similar symptoms as me, I had my hysterectomy July 2018, I was lucky my gp got me to see a specialist not long after I was complaining of pelvic pains, in 2015/16. I know a lot of women who are still trying to see specialists after many years of suffering. I live up north and it seems we have a great team who specialise in endometriosis. I’m also going through surgical menopause after my ovaries removed in 2019, but I’m not having too many problems with that just hot flushes, it’s the pain that’s my problem. I definitely recommend you either talk to your gp again or maybe try another doctor for a second opinion, so seem to know more than others. And see how you go, if they don’t refer you to a specialist, then try private if that’s an option for you. Good luck, take care big hug 🤗 x

Nikkky profile image
Nikkky in reply to bighug

Thank you. You obviously have a great g.p...good to hear! You’re very fortunate, it took me 10 years to get a laparoscopy and endo diagnosis. This seems to be the norm. I had the usual misdiagnosis of IBS. Plus I didn’t know I also had adenomyosis and pelvic congestion, which confused and complicated matters even further. Never mind-can’t change the past but fingers crossed for a healthier future for us all. Take care x

fdennis07 profile image
fdennis07 in reply to bighug

Oh bless you! I know that a hysterectomy isn't a cure but you have it because you think it is your best chance at a better quality of life.

I had endometrios bad on my bowel and had a resection. I have a temporary ileostomy because of it and will be having another operation in a few months to reverse it.

Hope everything gets better for you xxx

I had full hysterectomy and ovaries removed and stitches to my bowel and bladder, I choose not to go on hrt , 3 years that I had my opp I'm getting on ok just weight gain and the hot flushes ect .

fdennis07 profile image
fdennis07 in reply to Bluesea7

Hey hun, thanks for replying. Do you have to take anything in case of thinning bones? I'm 34 so told i will need HRT for several years x

Bluesea7 profile image
Bluesea7 in reply to fdennis07

I try and eat more healthy now , and I take well women tablets just to make sure I'm getting enough vitamins for the menopause .

Innaminn profile image
Innaminn in reply to Bluesea7

It is incredibly important that you know the impact of not having any hormones, it is immense, you increase your risk of earlier death from all causes, increased risk of osteoporosis, heart disease, dementia and Alzheimers and other neurological diseases and symptoms, symptoms of genito-urinary menopause syndrome (previously called vaginal atrophy) so incontinence, prolapse etc No diet or supplement can replace your hormones, only HRT can do that. Go to menopausedoctor.co.uk and you will find all the science backed info you need on HRT as there are a tonne of myths out there and even doctors don't know enough about it and get their info from the media the same as us but don't believe the scare stories basically. I will be taking HRT for life, menopause isn't something you go through and come out the others side of, the symptoms and effects of hormone loss continue until we die and I see no reason why I should suffer and have a reduced quality of life as I age when HRT is safe and super effective

Oh am I glad I found this as I have been worrying about this. I am 3 weeks out of full hysterectomy and removal of stage 4 endo. Currently still on tibolone until my follow up with my consultant. I’m not having any adverse effects from tibolone or any menopausal symptoms. Slight brain fog but that could well be my recovery.

fdennis07 profile image
fdennis07 in reply to Florrie2

Thats good to hear! I was only looking at another HRT as having a bit of hair loss but that could be due to my ileostomy and not getting usual nutrients! I've been feeling pretty normal if that makes sense on the tibolone. Hope your follow up goes well and let us know what YOUR consultant says about HRT haha

So thought I would give you all an update. Got a letter from consultant this morning to say that there 'is little concrete evidence that any HRT is better or worse than any other' once a total hysterectomy and removal of visible endo has taken place.

Combined HRT has a slightly higher risk for thrombosis and breast cancer in long term HRT studies and compromise is often to change to estrogen only HRT 3-6 months post op.

If priority is to reduce recurrence of endo can use combined HRT but then have to accept the small extra risk of breast cancer etc.

Basically said to discuss with GP and can do what I want lol...

What do you guys think? I'm pretty sure I'm gonna go with combined HRT but will discuss with GP

Hi Fay

My consultant has suggested I’ve to go onto 100mg Evorel patches twice a week. He said no need for progesterone. My 6 week post-op follow up with him has been put back so I haven’t been able to properly question him on this. However, he is a highly experienced endometriosis specialist so I guess I should trust him.

I’m a highly detailed ‘need all the facts’ person so will still bring it up again when I finally speak with him.

I did wonder if it was slightly insulting that I am questioning if he has excised all endo..

😁

Florrie2 profile image
Florrie2 in reply to Florrie2

I did read that it was recommended to have O and P until the age of 50 then go onto O only if you had had endo. I’m 48.5 yrs old so maybe it is an age thing to say O only?

fdennis07 profile image
fdennis07 in reply to Florrie2

Hey! Yeah on the NHS website it says about having both until menopausal age to help prevent recurrence. I am still on tibolone at the moment which is a combined HRT so think I am just gonna stick with this for the time being! X

I’ve actually just spoken to the doctor and she disagrees so I am going on Evorel Conti patches until we get something in writing from my consultant confirming oestrogen only.. I feel like I’m in a hormonal tennis match!

fdennis07 profile image
fdennis07 in reply to Florrie2

Good for you for speaking to your GP. It is hard to have a conversation with mine as he doesn't really know much about endo so feel like every conversation is a debate! Best GP i had was female and she used to be a gynaecologist and so was fantastic! Unfortunately we moved lol and no female GPs at my surgery (not that they necessarily know more than male GPs with regards to endo)

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