HRT choices and dilemmas - WWYD?

[thaneofglamour]

I have posted a few times across the year about this but never put my whole story together. Like many women, the advice I can get from my local HCPs varies in quality and is often reactive to health problems in the 5 minute slot, rather than in depth (they are not anti HRT though - definitely not so there's that) and even the specialist HRT nurse is a bit stumped. Buckle up : long.

I really am just after advice- or to hear from people with similar issues.

I first went to GP about 18 months ago (aged 51) just because I felt the time had come to go on HRT. My periods were very regular but had become heavier and I was getting night sweats and sleeplessness. Been suffering from sleep anxiety and stomach and nausea issues for about 8-10 years (may be unrelated, who knows?)

HRT number one - prescribed Elleste Duet on lowest dose. Pretty much fine. Night sweats zapped.

Three month consultation with HRT nurse - decided to try patches. I think this was mainly because tablets aren't all that popular to prescribe any more for lots of reasons always discussed on this board.

HRT number two - Evorel Sequi 25. All fine . No problems, until...

About two months into this I got a breakthrough bleed. No biggie , I thought, especially since not PMB. But reported to a (different) GP (as leaflet advised) who reacted to this by sending me for a scan and telling me (I now know wrongly) to stop the HRT. This scan led to confusion because she had noted me down as post menopausal so the scan recorded the womb lining as too thick (8mm) . After some umming and aahing they decided against a hysteroscopy. So, this was a 5 month break from any HRT. In this time, I developed constant nosebleeds (had had a few whilst on patches) but no one seemed aware of the link to hormonal fluctuations and nosebleeds despite me telling them!

HRT number three- 5 months later, to my relief, HRT nurse put me back on patches but at a higher dose. I proved to be horrifically allergic to these (assuming the adhesive)Nosebleeds abated quite a bit. I looked like a sunburnt giraffe.

HRT number four - Another GP (who specialises in menopause) suggested to try the gel 'because you must be allergic to the adhesive in the patches'. Even more allergic to this! Lenzetto spray suggested but not prescribed because reading suggests people can be allergic to that too. I never got round to the Utrogestan bit do have no idea whether I'd be OK with it.

HRT number five - Elleste Duet but 2mg (higher strength). This phase has been awful except for nosebleeds and night sweats stopped. In the second half of the month I have been sick every time (which also happened when not on HRT). I mean really really sick : vomiting, bedridden, urgent care , days off work sick and have had really horrible flooding, very bad 'PMT' and terrible ovary pain (and shingles, raised BP and raised cholesterol, just for added fun times). I think the tablets are to blame for a lot of this but can't know without giving them up. Another scan suggested womb had thickened a bit more (9.2) but not alarmingly and have gynae referral but it's in mid September- at which point I plan to push for them to eliminate endometriosis. (I have had Ca 125 tests come back clear)

So, three days ago, I thought 'sod this' and decided to try a month on patches and see if I am sick in the second half of month. I had some 50s left over. I know I should have expected it but I'm still allergic...

I guess these are my choices:

1. Decide painful allergic reaction and red rashes is better than being really ill every month and put up with patches (assuming I am right that the Elleste was making me sick)
2. Try Elleste 25 patches again which I had no allergy to, bizarrely, but perhaps put up with some nosebleeds and more symptoms (who knows, maybe upping the doses was wrong?) And maybe discover I am allergic to those now too.
3. Mirena Coil is a no go for me for a range of reasons before that gets suggested.
4. Push for going on continuous HRT which at least should stop heavy monthly bleeds? But what kind, since I seem to be allergic to life.
5. Give p on HRT altogether, have nosebleeds 5 times a week and some night sweats and lose all the other longer term protective benefits. (I have never really had any other major symptoms) Then I will find out if am post menopausal or not, at least.

I am making light of this a bit. I've found the whole thing bewildering, confusing, distressing and depressing - and am constantly anaemic due to either nosebleeds when HRT less or flooding when on current HRT. I love the work Davina and co have done but they do make going on HRT seem really stress free and straightforward and I seem to be not able to get it right and to have reached an impasse.

Would welcome anyone's two pennies worth!

Can I just start with this
This scan led to confusion because she had noted me down as post menopausal so the scan recorded the womb lining as too thick (8mm)

For reference- women on sequential HRT (post meno) aren't expected to have a endo lining as thin as post-meno women not on HRT. Up to 10mm is considered acceptable when using sequential types and the thickness varies according to the time of the cycle. Obviously when it's close to a withdrawal bleed, the lining will be thick (er.)

Lenzetto spray is not gel. It's a spray .

Gel is Oestrogel . It is a GEL.

I hate to sound simplistic, but to be honest, you need to try Oestrogen gel and Utrogestan.

Faffing about with tablets isn't going to work. And longer term they have a higher risk of clots so rule those out.

One reason is you can't taper the estrogen dose yourself. The other is you're limited to the type of progestogen in them (most usually Norethisterone) .

You should start on a low dose of gel- one pump which is half the 'normal' dose. And stick with that for a few weeks. If it doesn't help your sweats and sleep, increase it to 2 pumps.

You will need to take Utrogestan for 12 days per cycle. If this wasn't through a GP, some consultants would advise using only estrogen for a few weeks to get the dose right before introducing any progestogen.

Does this help?

I'm happy to discuss by PM without putting all my personal experiences (16 years on HRT with a consultant) out here.

Hi jingling, I obviously wasn't very clear but I did try the gel (it was after this that Lenzetto was suggested but abandoned. I was so allergic to the gel it made me ill...

I did know that about the lining. It was the GP. The senior partner had to get my notes corrected.

Are all your symptoms linked only to HRT?
Those kinds of violently allergic reactions are very unusual.
Do you have a history of allergies?

The most important thing is to use a low dose that doesn't provoke a reaction.

You've not tried Femoston from what you've said.

It's a tablet but the progestogen in it is almost as body-identical as Utrogestan.

OR - why don't you go back to the other types that worked okay?
Elleste Duet or Evorel sequi?

If you can't use gel/spray or a higher dose patch, the only things you've used that were 'ok' are you best option.

Tablets are not perfect but it's only once you get to 60 that the blood clot risks kick in more ,.

Have you seen a ENT consultant about the nose bleeds?

Did you ever try estradot patches? When they were having supply issues I was prescribed an alternative (maybe evorel but I can’t remember). They were a lot bigger than estradot and made me itch - but estradot has always been fine. But given you reacted to spray and gel maybe it’s not the adhesive.

Menopause Matters website does seem to suggest allergic reactions to the patches are reasonably common. It makes no real sense that I seemed to not allergic to the 25s, admittedly. I am allergic to latex anyway and to most sticking plasters but not any thta claim to be hypoallergenic which Evorel claims.

I don't want to go back to lowest Elleste because I don't know how that will help - I am assuming some of this illness is me being further through the menopause and it not being managed all that well.

I have seen an ENT consultant who could not have been less interested in any chat about what might cause nose bleeds. Put a tube up said my nose was a funny shape, told me not to pick it (!). I went back 3 months later and said' goodness they stopped ! Do you think it's hormonal?' and he said. 'Glad to hear they stopped. off you go, don't pick your nose'. Not even paraphrasing.

Quite a lot of my symptoms do tally with endometriosis but , again (as widely reported) no one seems very interested in this. But I have had scans whihc say ovaries etc look fine.

Estradot was my other thought and your experience is interesting! I might ask but I do know about the supply problems. Do they have combi patches or do you have to use Utrogestan too?

I wish medics were more interested in this reaction. The senior partner seemed really surprised I was allergic to the gel. But no curiosity.

I suppose I should have reported it all to that scheme - but that doesn't help me personally .

There are a few different things going on here.

Allergy to patches is usually the adhesive round the edges- not the actual estrogen / progestogen in them.

You say you've tried Oestrogel and reacted to that.
You don't want to try Lenzetto as someone said it may be the same. Personally I'd ignore that and try because it's not the hormone you'll be allergic to as it's body-identical, but the 'carrier' products.

There is also Sandrena gel as another option.

Estradot is an estrogen only patch. You'd need to use Utrogestan or Norethisterone tablets with it. (Or there's Provera too.)

And there is Femoston (tablets) which you've not tried.

What symptoms seem like endo?
Have you had those symptoms for life?
You probably know that the only way to investigate is with keyhole laps or other investigations.

It was the GP who did some reading and unearthed stuff about allergic reaction to the spray. It's just the faff of trying something else again. I would spend ages googling ingredients of the gel but I don't think that would help me to isolate the allergen.

I am arming myself with all the ideas and will ask for an appointment.

Re endo : I get really really bad cramps right in my left ovary up to two days before bleeding : I feel like I need gas and air. It radiates down my leg ( and I read about sciatic endometriosis so wondered). I also get nausea and vomiting for the last six or so days of my cycle.(this as mainly been when on the recent Elleste but also when not on HRT). And then painful bleeding.

I am a lifelong on off sufferer of fairly bad period pains on and off but not this bad- this is whole new league.

You can be allergic to estradiol : I just found this...

https://pubmed.ncbi.nlm.nih.gov/12092023/

That's a contact /dermatitis reaction though not a whole body reaction. What you seemed to describe earlier was a whole body reaction of time off work, in bed, nausea etc.

Have you the means to pay to see a private gynaecologist?

I'd say this is outside the realms of experience of a GP or nurse.

thaneofglamour sorry, I can’t help with your hrt dilemma as I’m only just dipping my toe into this world and am a little unsure of the best options for my personal issues but regarding your concerns about endo, I’m 51 and only found out a few months ago the decades long heavy periods I’ve suffered from are actually due to endometriosis (I’ve also developed adenyomyosis due to a botched gynae op).
I never even suffered from painful periods at all but have had many many years of heavy bleeding, awful digestive issues and painful ovulation.

I requested a pelvic mri which was read by a radiologist who specialises in endo and so it has been detected that way (says deep infiltrating endometriosis, I never gave it a thought). Now on a very long wait for a laparoscopy. It’s definitely worth pursuing, my endo gynae says he sees many women in their 40’s and 50’s who have suffered for decades.

The allergy to the patches and gel is contact dermatitis. The other tuff is God knows what reaction to what in my body.

I might have to go private but it's £250 just for a consultation...

Re endo : I get really really bad cramps right in my left ovary up to two days before bleeding : I feel like I need gas and air. It radiates down my leg ( and I read about sciatic endometriosis so wondered). I also get nausea and vomiting for the last six or so days of my cycle.(this as mainly been when on the recent Elleste but also when not on HRT). And then painful bleeding.

Okay, my own take on this is that it's type of period pain.

On HRT withdrawal bleeds I used to get very bad pain that radiated down my thighs. I was bed bound for a few hours. (It's changed now that I'm using a different progesterone.)

I know that the advice is to start taking NSADs (like Ibuprofen) for 3 days before a period starts.

Taking NSAD changes the effects of prostaglandins which are responsible for the pain during a period (and in some women before the bleeding starts.)
You need to take the full dose of 3 a day (or whatever it is) and continue throughout your period.

Thank you - really helpful info.

I mainline ibuprofen tbh- but then they told me to stop because of nausea risk. Sigh.

But I might ignore as paracetamol is crap.

So would I not get this if I came off HRT? Or changed to the progesterone less often thing?

lostinfrance, I too have had decades of digestive issues. Hmmm.

I've no idea.

Not sure about a nausea risk but NSADs do have some serious side effects (like kidney issues) and no one should take them all the time without medical advice.

You need to see a specialist. If your GP won't refer you, bite the bullet and if you can afford it, do it privately.

Very common in endo sufferers.

I’m also allergic to the adhesive in patches, and my pharmacist suggested rubbing my bum with antihistamine cream, and let it dry thoroughly before applying the new patch. I didn’t get to try it as I ended up having an estrogen pellet, but it might be worth a go.

I might do that. Some of those are very harsh on the skin though so it's a catch 22.

To be clear, I don't have Nurofen every day! Just when I have period pains or migraine.

Not really meant to have them with BP tablets either.

£250 for a private gyno sounds rather a lot. I saw a Harley Street gyno for £150 (zoom for follow ups). Happy to share their details if you would like

That's very cheap and unusual. I've never heard of any consultant (not a private GP) charging £150.
Most are £250+ even in provincial areas. In London they tend to be £300ish.
If anyone is seeing a private consultant they need to check their training and as a minimum should be MRCOG or FRCOG (Member or Fellow.)