Stopping HRT today with no tapering - How shit is this going to feel and for how long?

[SoThatsTheWayItIs]

Currently on 50mg oestrogen patch and 200mg daily of progesterone tablets. I have severe endometriosis so following an ablation last year consultant advised to keep to this regime. I'm 49 and still having regular periods but have spoken with GP today due to period starting 3 weeks ago and bleeding hasn't stopped. Not really heavy bleeding just like a light period.

GP has put me on two week pathway for hospital appointment and advised I need to stop HRT today until I have been seen. I'm feeling shit and just dreading doing something that is likely to make me feel even more shit. Am also waiting for blood tests for coeliacs disease so hanging on by a thread with keeping on top of work (self employed).

Any wise advise for managing this? Anyone ever been advised to stop suddenly? I know it will be different for everyone but honestly feel like I'm hanging on by a thread most days as it is and the thought of having any more physical symptoms to deal with is tipping me over the edge.

I had to stop suddenly when the pharmacy ran out of my tablets. The Rage was the main symptom that came back. Luckily I live alone, so nobody was in the firing line. Hope you get some answers quickly, it’s horrible waiting.

I am sorry you are going through this and hope it isn’t cancer.

My experience is with sudden erasure of estrogen from my system but not stopping HRT. So during radiotherapy for breast cancer, they started giving me monthly injections to chemically induce menopause. So within 3 days I went from peri into full menopause. Then on top of that, a week after the first injection, I was started on an aromatase inhibiter to reduce my estrogen levels from the low menopause level to zero.

It sucked and still sucks. Hot flashes several times a day that last a good 15-20mins that then get much worse at night. I am talking dripping with sweat. Brain fog, forgetfulness, clumsiness. Everything aches all the time. I stiffen up if I sit too long. Moustache has developed combined with thinning hair. Urinogenitury issues with my fanny as well.

So I would imagine you would quickly get similar menopause type symptoms by stopping HRT. I read they were approving new medications for hot flashes and so on that are nonhormonal?

That's a hefty dose of progesterone compared to oestrogen?

I hope everything is fine going forward.

I ran out of hrt when my dad was ill and I couldn't get home. 5 days in, I was bursting into tears no matter what intense emotion I was feeling, which I hated. I also had hot flushes so much that I stood in cold showers every evening

I had a heart attack and had to stop HRT overnight. I was off work for a while so I think that helped balance coping with the side effects. I’ve always found mood to be the worst thing and I’m on sertraline for that. Yes, hot flushes aplenty, thinning hair, sleeping difficulties, zero sex drive. All still going on 6 years on.

What were your symptoms before starting the HRT? Have you been on this dosage for a year with no issues until now?

I would assume all your symptoms would come back. I also have endo, been on HRT for 7 months including the continuous progesterone and I still have periods. For me the hot dry flushes stopped within 24 hours of starting my HRT and that was the final symptom that pushed me over the edge to start HRT.

The continuous progesterone is to protect our bodies from having unopposed oestrogen feeding the endo. I believe that there is a likelihood of breakthrough bleeding from taking continuous progesterone but usually settles withing 6 months of starting (from a leading endo gynae on podcast). This is why women who have periods, but no endo, are on the cyclical progesterone.

Breakthrough bleeding can be the HRT or something more sinister and they don't want patients to dismiss bleeding as HRT. I really feel for you if you are feeling the benefit of HRT to suddenly stop it.

Just for info, I am on 2 pumps of oestogel which I think equates to your 50mcg patch but only 100mg of progesterone daily via oral Utrogestan.

I stopped during covid because of supply issue, it was alright tbf I did have some blips, I was still having periods, but had my last just after my 50th birthday, good luck with everything.

I had to stop my HRT suddenly too.
I was fine...hopefully you will be too x

@SoThatsTheWayItIs Just to reassure you, the risks of endometrial cancer when using HRT are minute. it is lower than for most women not on HRT.

Also, your GP doesn't have to stop your HRT. There is guidance online on this by the BMS and stopping HRT is one option but it's not mandatory. There is also more recent guidance on the investigation pathway - it's a scan within 6 weeks (not 2) for women on HRT.

I think it's alarmist to tell women it's the 'cancer pathway'. That is guidance for women who bleed post menopause and it's great they are being seen quickly. However there are many reasons for odd bleeding, especially on HRT and when you are still having your own periods. Bleeding on HRT is very different form bleeding 10 years after a last period.

I've stopped HRT twice. The first time I went cold turkey (this was after being on it for 10 years) and symptoms kicked in after about a month.
The second time, some years later, I tapered it over 3 months. Symptoms back within 3 weeks. (Both times I stopped it was my choice.)

Hopefully you will get your scan and it'll all be fine.

Yes it was advised by the consultant last year due to ongoing bleeding whilst I was waiting for laparoscopy and ablation. Following that I had two polyps removed and the laparoscopy highlighted pretty severe endometriosis. Consultant advised to stay on this dose.

It took ages for my symptoms to come back. About a month maybe two then the ants with electric feet started crawling all over my skin again all night long and I thought sod this and went back on hrt again.

Prior to HRT it was mostly low mood, fatigue and insomnia. I think with hindsight a lot of issues were the undiagnosed endometriosis. Other than very heavy periods I didn't actually have many endo symptoms prior to starting HRT. Even now that it has progressed to bowel, bladder and everything is fused together I get relatively little pain compared to some.

Originally I was on sequential patches and they helped a bit with peri symptoms but if I'm honest I don't feel much better for being on a higher dose. Am also having investigation for coeliacs so wondering if most of my shitty symptoms are not actually peri!?

Thank you for this I appreciate the reassurance, naturally the mind wanders to worst case scenario. I'm hoping my endo history and the fact nothing sinister came up during my laparoscopy and ablation last year is a sign it is something else.

My only concern with the scan is that last time only the polyps showed up and not the endometriosis despite it's advanced stage. I had the option of a second surgery due to the bowel and other organs being affected but I decided to go with wait and see as since the ablation my periods are pretty light and I don't get a huge amount of pain. Perhaps that was a mistake?

Endo symptoms could be presenting as other things, it is the reason it takes so long to diagnose because it overlaps with other things. For me I never had painful sex which is a classic symptom or heavy periods but I did feel like I was going to pass out when I emptied my bowel. I also have chronic fatigue.

I am wondering what your possible coeliac symptoms are. Endo belly is a thing, so you bloat and can look about 7 months pregnant. I do this, when my children were younger they were amazed and how big my belly got over the course of a few hours and it has nothing to do with any food I eat. Endo can also explain a lot of coeliac symptoms. But better to test and find out.

Endo can be seen on an ultrasound but you need someone who knows what they are looking for. Mine was also missed but I did have cysts that were seen and it was over 20 years ago.

From your symptoms of low mood, fatigue and insomnia, I am no expert but they all fall under peri. Low mood with endo is usually from being in pain all the time which you are lucky not to have.

Yes prior to diagnosis I was told it was IBS and since diagnosis I have put a lot of my symptoms down to endo, particularly as the bowel is involved. It was a thread on here that made me wonder about coeliacs apparently there can be a link between the two. Aside from the usual bloating, bowel issues my other symptoms are frequent bad headaches, mouth ulcers and joint pain. Always seem to feel on the verge of coming down with a bug.

Good chance it is not coeliacs but I want to try cutting out gluten regardless but you need to be eating gluten to test for coeliacs. If it comes back negative I'm going to try going gluten free anyway for a bit. I thought the fatigue would improve once my periods were under control and with taking HRT but it's as bad if not worse than ever. Clutching at straws at the minute to know how to help myself.

Presumably, the OP was referred to the 2 week cancer pathway because endo carries higher risk of gynecological cancers. Bleeding for weeks is not normal even with endo, so should be looked at urgently.

In short, the guidance you posted for women on HRT is for women without chronic conditions like endometriosis that carry with them higher risk for cancer.

I had to do this for an operation, the night sweats came back almost instantly but no other symptoms. I think I was meant to wait 6 weeks or whatever it was before going back in it but I only waited around 4 weeks.

I've been doing a bit of research this afternoon and it doesn't feel clear cut that stopping HRT is the right thing to do. Some of what I have read would suggest that this is a typical approach if you don't have endometriosis but not necessarily advisable if you do with discussing with the consultant who advised the dose in the first place.

To be honest my GP surgery have been quite crap for the whole endo journey and although during my phone appointment the GP was nice and is doing the scan referral he didn't seem that clued up about HRT or Endo and initially said he would refer for a scan and then phoned back later to say he had discussed it with another doctor and decided I should stop taking it.

I'm going to keep on the HRT over the weekend and call back the surgery and ask them to seek clarification from the consultant gynaecologist. If they can't/won't then I'm tempted to book to see him as a private patient while I wait for my scan date.

@SoThatsTheWayItIs I do feel that there is a lot of information available online, sadly endo and peri/menopause info is thin on the ground but I do follow on social media some GPs who cite papers from peer reviewed medical papers, an endo surgeon who performs endo surgeries pretty much daily and a research lab working on women's health, mainly endo.

I had to fight to get continuous HRT. I had to go back with printed research from the British Menopause Society etc, it was hard to get what I needed and even then she told me I would have breakthrough bleeding and "be all over the place" hormonally because I still have periods. Neither happened thankfully. Usually a highly trained menopause nurse deals with HRT but because I have endo I fall outside the norm so had to book to see a GP.

Sadly there does seem to be links between endo, coeliac, EDS, fibro and a few others.

I feel that we need to arm ourselves with information, I got a lot of help from reading this board and I am grateful for MN.

Hi, when i stopped, it took a good 4-6 weeks before my symptoms actually came back properly. They kind of came back in gradually, starting with the hot flushes. I think everyone is different.

@SoThatsTheWayItIs I would absolutely keep on using the HRT. your scan is likely to be relatively soon. You aren't going to make anything worse in a short space of time.

I've just got back from seeing the consultant gynaecologist. I paid for a private appointment (He did my original laparoscopy and ablation in a private hospital on the NHS pathway).

He told me to stay on the HRT as coming off would just make me feel bad and probably increase the bleeding and he said there was no point in making myself feel any worse and it has no impact on the scan or what happens next . He said regardless of what the scan shows I need to have a biopsy to rule out cancer but he is fairly confident that the bleeding is hormonal. I had a biopsy a year ago when he did the ablation and all was clear. He has also recommended having a mirena coil which should stop any bleeding.

He is writing a letter to my GP to ask for me to be referred back to him via NHS pathway for the biopsy and mirena coil so even though I still need to wait for the scan hopefully the process for the biopsy referral will get put in place and I can continue under his care.

£250 lighter this evening but very glad I went to see him. Not necessarily out of the woods yet but at least I feel that the plan makes sense and I have confidence in the advice I've been given.

That's a great outcome op.

I am always a bit 😕when GPs tell people to stop using HRT before a scan.

I've had tons of gynae investigations privately incl biopsies and hysteroscopy and no one ever told me to stop the HRT.

Yes I'm glad I booked to see the consultant. I think GP's just follow a generic guideline tick box with these things. Mine doesn't seem to have much knowledge about HRT or endo let alone the two combined!