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[Mogster71]

Hello everyone
I haven't been on for a while, had a difficult year so far Pet loss is horrific...
I hope you are all doing ok and I was wondering if I could ask the collectives' advice or feedback on something please?

I am coming up to 52 and as far as I know, late perimenopausal. My GP has been a bit hit and miss with their support (I got told once I was chasing rainbows!) so trying to find my own way sometimes. After 3 years on sequential HRT my headaches (which were the main symptom for me) were starting to make a return so last autumn I consulted a private meno specialist, who advised going on to continuous. At the time it was oestrogel 4 pumps and Utrogestan daily. I felt so unwell with almost constant nausea and erratic bleeding that I gave up after about 6 weeks and went back to sequential. I also went back to Evorel 100 patches as the gel was such a faff.

I've been struggling along with this but about 3 months ago I asked the GP again if I could try something different like Provera to attempt continuous, as Utrogestan causes me such low, terrible mood and fatigue for the two weeks out of each month it was becoming unbearable. As a rule I also start my bleed before I even finish taking it. I can't take the Utrogestan vaginally as it causes me real irritation on the way back down  The GP talked me out of Provera, saying it was an "older version" of progesterone, and suggested daily Utrogestan again but based on my previous attempt I was not keen. I told them then that the best HRT I had ever been on was Femoston 2/10, but I had to stop that because I needed to increase the oestrogen amount.

Another month has passed by with yet more headaches and nausea and so I approached again. This time, they suggested Femoston Conti plus an extra oestrogen patch, but that the additional patch would need to be cleared by their specialist contact at the hospital. Unfortunately, due to a miscommunication on their part, 4 weeks on we are still waiting for their response, and I'm still feeling rubbish, I've come to the end of the progesterone phase again so it means another month at least feeling the same as my GP is now on holiday.

I am sorely tempted to try the Utrogestan continuously, but it would mean changing again if I don't get on with it or they give the Femoston the green light. They might not even do that! The other thing is that before I needed an increase, I felt great on the conti part of the Evorel patches, does this just mean I get on better with synthetic progesterone? Part of me thinks I wouldn't feel any worse; my hair is dropping like crazy and despite me asking, they've not even suggested a blood test for my thyroid or iron levels.

I apologise for sounding really negative but just wondered what others would do in this situation...

[sheila99]

I'm in a similar situation. Fine with evorel but can't use it now because of an allergic reaction to the glue. Fatigue and poor sleep with utro so I use it on a 6week cycle to maximise the 'good' time (v late peri/meno). As you get on with femseven would a mirena be an option for you as it's the same progestin? I'm wondering if it will work for me, have asked for femseven patches to trial it but gp can't possibly prescribe double dose (need oestrogen 100) so writing to specialist...
The consensus seems to be that you need more prog than the patch provides if you increase oestrogen. Some GPs will prescribe this, others like mine won't but might be worth asking. They told me there's a slightly increased risk of endometrial cancer with a sequi regime on meno but I'd rather take the risk than be permanently doped.

[joziel]

With the iron, you can get a test yourself (finger prick test) from Medichecks.com There is a full iron panel or a slightly cheaper ferritin only test. You want to make sure your ferritin is over 100. Most menstruating women are iron deficient...

They also offer a full thyroid panel (Advanced Thyroid test) with free T3, free T4, thyroid antibodies - which is a lot more than you will be able to get from your GP, where they will test only TSH. The Medichecks test doesn't cover reverse T3, that's the only one they don't cover...

[Mogster71]

@sheila99
Thanks for replying, you have been so helpful to me in the past x
I had forgotten about long cycling so maybe that's something I could ask them about next time I actually get a phone conversation! It's so difficult isn't it.
The one I got on with was Femoston which is a tablet. Strangely enough I did try the Femseven but they were awful for me; I do get a mild irritation from the Evorel patches but these were much worse for me and would hardly stick. It was like using regular sellotape so they don't really "bend" very well.
I'm the opposite with Utro, it just zombies me out - and I can't get going in the mornings. I'm on the verge of tears the whole fortnight and the anger and irritability is horrible. That's what makes me reluctant to go on it every day, although I accept it is half the dose. I believe last time I even tried it earlier in the day to see if that helped but I still didn't enjoy it!

@joziel thanks, I'll look into the finger tests lol. I suppose the only worry I would have is interpreting whether the test results put me in a good or bad place..

[Mogster71]

Forgot to mention the mirena - that was recommended to me and at first I thought no, I am progesterone intolerant - but actually I don't think I am. Just to certain types.

The downside is that my surgery don't offer it, the only option you have is to LIE to get it via iCash (what used to be the GUM clinic) as they won't offer it to menopausal women, only to those who want it for contraception. I'm sure if we were all enjoying a healthy sex life with all this going on it wouldn't feel like such an insult!! My hospital is at least a 34 week wait for a gynae appointment so I'd probably be out the other side by the time it was fitted.. I could go private but we're talking about £1000 ish once you've had a consultation and the same again to have it removed if you hate it.

Someone did tell me that other surgeries in my local town do Mirena's themselves, I'm not sure whether that in itself warrants moving provider!

The femoston is dydrogesterone, it was just so much easier.. but I got on with the Evorel conti as well. I felt better in the progesterone phase than I did in the oestrogen bit, who would have thought that...

[joziel]

One thing to consider, is that the headaches coming back might mean that you need more estrogen... not a change in progesterone?

I know you were on 4 pumps but some women need a higher dose than that. Migraines/headaches are often a sign of low estrogen. (They are for me too.)

It would be above the licensed dose though, so some GPs wouldn't have the confidence to prescribe it.

I don't know if you can afford a private consult, but with complicated situations like this, it can really help to have an experienced meno specialist on your side and a lot of time to explain what you've tried in the past and what worked best - plus someone with the experience to think outside the box a bit, with alternative progesterone solutions. I really recommend Dr Olivia Jones at Newson.

[Hurdity]

Hi Mogster - we've chatted in the past...sorry to hear you still have problems and yet again another example pf the need for dydrogesterone to be licensed and available separately. From what I gather many women are able to tolerate this, of the synthetic progestogens available, and it is very similar to progesterone - just can be taken in very small doses compared with progesterone.

If you want to try provera - there is no reason why you should not do so surely? After all you are still young and only just over 50. There have been reports of women on here feeling OK with this when not so with other progestogens or progesterone itself. It is your right to have the HRT you need and choose if there is no medical reason why not.

I'm another long cycler though in my case unfortunately the cycle is getting shorter but that's another story - but 6 weeks is a good compromise. Not sure though whether this would work when you are on high doses of oestrogen and absorb it? Bleeds may end up being too heavy or breakthrough bleeding - especailly as you seemed to bleed before the end of the Utro cycle. In consultation with your doc of course.

Sorry I can't be of more help but hope you manage to sort this out - do keep us posted!

All the best
Hurdity x

[Chunkola]

Just popped in to say I switched from utrogestan continuously to provera as I kept bleeding after many years on it. I love it! Didn't realise how wiped out utrogestan made me until I switched. Hope this helps! I'm 51 and was taking utrogestan for approx 13 years

[Mogster71]

I'm so sorry I haven't been back to this thread, busy week and lots of headaches sadly!

Joziel yes historically when my headaches start to return I have had to increase my oestrogen but at the equivalent of 4 pumps I'm as high as the GP will prescribe. I do think I need to tackle the progesterone side as well as coming up to 52, there's really no need for me to be having periods any more. The last time I tried continuous I just bled and felt terrible, really nauseous, although I probably didn't wait it out quite long enough. I'm getting these symptoms now anyway on sequential! I also wasn't on 4 pumps I was on 3. So I'm keen to explore that option in case its purely the fluctuation of hormones which are causing the heads.

I would definitely consider going to Newsons, thank you for the recommendation. I think in the past I have been put off by people waiting (and paying) to see so called "experts" and being disillusioned with the advice or poorly advised. I'm sure they should be very knowledgeable, they also do their own coil fitting if that is a recommendation, even though it's a 3 hour drive from me. I hope you don't mind me asking but when they have prescribed, do you go back to your GP and get them to prescribe,  or do you have to get the private prescription every time?

Hurdity how lovely of you to stop and comment, thank you... I hope you are doing ok. I did very well on dydrogesterone, so I'm hoping the specialist gives the green light to my GP to try the Femoston Conti with an extra patch. If not I'll stick with the Evorel and push again for Provera. Strangely, this cycle I didn't bleed until a few days after stopping the Utrogestan, and it was such a light period!

Chunkola that is encouraging, thank you.. I'm so glad you've had good results from the Provera. I hope you continue to feel well x

[pepperminty]

Hi,

I am on Femosten also. You may be able to have extra estrogen , I am sure someone doubled up with the medium and low dose contin on here at one time. Also Nick Panay prescribes the Dygesterone part if all other avenues have been exhausted. I wrote to L Newson asking her to advocate for Dygesterone and she said "there is no commercial interest". I did politely ask her to creat some interest, but got no reply! Until the big guns start shouting nothing will happen. Dygesterone has an excellent safety record and is very breast freindly.
If it were men that needed more choice , there would be far more options. The annoying thing is hat it is already out there!

PMxx

[Hurdity]

Just popped in to say I switched from utrogestan continuously to provera as I kept bleeding after many years on it. I love it! Didn't realise how wiped out utrogestan made me until I switched. Hope this helps! I'm 51 and was taking utrogestan for approx 13 years

Glad it worked for you Chunkola and  .

Hurdity x

[Hurdity]

Hi,

I am on Femosten also. You may be able to have extra estrogen , I am sure someone doubled up with the medium and low dose contin on here at one time. Also Nick Panay prescribes the Dygesterone part if all other avenues have been exhausted. I wrote to L Newson asking her to advocate for Dygesterone and she said "there is no commercial interest". I did politely ask her to creat some interest, but got no reply! Until the big guns start shouting nothing will happen. Dygesterone has an excellent safety record and is very breast freindly.
If it were men that needed more choice , there would be far more options. The annoying thing is hat it is already out there!

PMxx

Hear hear - exactly, one of my favourite hobby horses (the lack of dydrogesterone in UK as separate progestogen!). I can't understand what the barrier is to re-licensing and repackaging an existing product....

Re Nick Panay and dydrogesterone - I had no idea that there were specialists prescribing it and presumably sourcing it from EU as Duphaston? Do you know anything more about this? He practices on NHS as well as privately - well used to anyway, not sure about currently?

Hurdity x

[Hurdity]

Mogster - all good here thanks.

Re getting your GP to prescribe after a private consultation. This is a crucial point and there are many women who might just be able to scrape together the funds for one consultation, where they are not getting the treatment they deserve from NHS, if it meant they could then be prescribed what they needed on NHS.

I know nothing about how the Newson clinic works but usually a private consultant will (I think - I've only had one such consultation, back in 2015!) write to one's GP with their recommendations - not sure if this is part of their licensing as a private clinic or goodwill, and whether one has any choice in the matter, but I think the subsequent acceptance of the specialist recommendation and prescription will be up to the GP concerned, if it wasn't as a result of a referral from the GP practice.

Personally I woud suggest discussing with your GP beforehand - firstly what you are looking for re treatment, and if they refuse or say they dont have the expertise, then say that you intend to have a private consultation, and ask that they accept the recommendations of any consultant or menopause specialists. If they say they won't - then this is a problem and sets you up for expensiie ongoing private treatment.

I gather some practices say their NHS Trust doesnt support some products but this is not the case because any licensed product I think can be prescribed - but has to be justified in your notes.

All the best anyway!

Hurdity x

[Wrensong]

Hi Mogster, I can't add much to the great advice on here except to say for a while I also found Provera more tolerable than Utrogestan & was prescribed it at age 57, admittedly initially via private consultation though my GP surgery were happy to continue to prescribe.  I also used Norethisterone tablets (the progestogen in Evorel Conti you felt OK with) as part of my regimen for a while, but found those almost as toxic as Utrogestan, though like you, I had tolerated transdermal Norethisterone on first starting HRT back in 2015, but likely only because I got poor absorption from EC.  I don't know whether N tablets might be an option for you.  I did get a substantial bleed from them, but reading around recently I think they are not usually prescribed for HRT use with higher than medium doses of oestrogen - Hurdity will know I expect.

Re Duphaston, someone posted on here a couple of years or so ago that they'd been prescribed it at Nick Panay's clinic, as Pepperminty said.  By that time I'd already scraped the bottom of the barrel as regards prog, which was making me increasingly unwell even on a long cycle regimen & was looking at hysterectomy as the only way of continuing with HRT.  I'd been unable to continue with Femoston when I tried it briefly, because it aggravated pre-existing migraine - a known issue with oral regimens.  So I asked for Duphaston to use with my oestradiol patches & got it on a private prescription.  I don't want to get anyone's hopes up because it was not at all easy to get hold of, imported from Germany I think - the PILs were in German at least.  Several pharmacies I approached with the scripts were unable to source it (including independents who'd managed to get me other unusual meds) & the only way I could get it was via the private hospital pharmacy, often with weeks to wait & the increasing sense that it was becoming so difficult for them to obtain as to probably be unsustainable long term.  Though I did find it the most tolerable of all the progestogens & it enabled me to continue with HRT until hysterectomy, had the surgery not been agreed (for more reasons than prog intolerance alone) the reaction to prog had become so extreme that I couldn't have continued on HRT even if Duphaston had been easy to obtain. 

I'd also raised the issue of the need for Duphaston to be brought back for HRT use as another much needed prog option with a very good, senior menopause oriented gynae a few years ago (not the clinician who prescribed mine).  He said it was under discussion at the time, so I thought only a matter of time before it was back for UK prescription on the NHS, but as we all know, frustratingly it hasn't happened yet.  Next time I see him I'll ask what happened about that.

Mogster, I do hope you manage to find something that makes you feel a great deal better.
Wx

[pepperminty]

Hi All,

I do have a paper somewhere that  I printed off  which says Duphaston can be prescribed in special circumstances. But yes as mentioned it has to come from abroad etc. And as we know the post is not great at the moment  .

If some of the celebrities and  HRT specialists got together and started a debate about it then it wouuld at least be on the agenda . But it seems the prominenet specialists are not interested in pushing for it. They could easily place it on the agenda - get the BBC, this morning talking about it etc , but no one does.
If men took HRT and there testicles were the equivalent to our boobs  , and Dupaston was the most testicle friendly option - you can bet your bottom dollar it would be widely available.
All the specialists know prog' causes the main issues , yet I have not heard one advocate for it.

PMxx