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[jillyrich]

Sorry for the long post.......

I've been on here a few times asking for advice and it's been very helpful. I now feel that I have come full circle on my menopause journey and am at a loss at what to do next.

 I'm now 57, post meno approx 5 years. History of DVT/PE.

2014 - prescribed Evoril Conti. Started off ok but after about 8 months of irregular bleeding it increased until I was bleeding week on/ week

2015 - Changed to  Fem7 - same problem with the bleeding.

Referred to hospital for scan - all good.

2015 Emailed Dr Currie and then saw GP and started on estradot and Utrogestan.

2016 No bleeding on the Utrogestan but felt utterly hideous after about 6 months - tired, bloated (fat really) and almost drugged. Couldn't get myself motivated at all.

Really feel I may have an intolerance to progesterone.

Late 2016 came off all HRT and hoped to cope without anything at all but this didn't work, the flushes came back after a couple of months.

2017 Back to Docs to ask for a referral to a meno clinic. They refused, said there wasn't one. They asked me to go back on the Evoril Conti to see if it had the same effect as previously. I said I'd probably just bleed again.

I did. Started bleeding within 3 weeks of putting 1st patch. Within 3 months I was back to bleeding week on week off again. So I cut the patch in half and hoped that would help with the bleeding. Which it did, but I still felt pretty awful the majority of the time.

So here we are, late 2017, and I've come off the patch again. I went back to the docs today and once asked again to be referred. I am fast running out of options here. I can't take tablets due to history of DVT, it needs to be a patch. She said I need a scan cos I'd been bleeding on the conti regime. I'm about to pull my hair out! I knew it would happen.

So this has pretty much been going on for nearly 4 years. I really feel that I've given each of the regimes a good fair shot, nearly a year per regime really. And I'm back to where I started. Except 2 stone heavier and a million times more lethargic. I'd really like to try the long cycle as there isn't much else around that I can take.

But the doc can't prescribe it. And she won't refer me. I can't afford the £1000 fee approx for Professor Studd. What's a girl to do?

I'm not sure what I'm asking here. Not sure if I'm looking for sympathy or for some bright idea that I haven't thought of. Either would be welcome to be honest!

If you've read this far, thank you!

[Taz2]

Hi jillyrich - sorry for brief reply but have you considered a sequi HRT where you would get a controlled bleed once a month and wouldn't have to put up with progesterone all of the time? I gave up on conti HRT due to constant bleeding for over six months and going back to sequi was the best thing I did. Bleeds were light - after the initial three months - and I knew when they were going to happen. Quite a few women do return to a sequi regime from what I've read.

Taz x 

[peri]

Hi Jillyrich, poor you, you certainly have tried each regime, longer than I would anyway.  Taz has taken the words right out of my mouth, with the sequi regime you don't have to put up with continuous progesterone and it's side effects.  I use this regime (evorel 50 patches which are very good) and utrogestan for progesterone, my bleeds only last a couple of days so are manageable.  I do have a couple of off days as the utrogestan leaves my system, but on the whole it's a good regime and I feel good most of the time.  Don't give up, you still have options x

[vickypk]

Hi jillyrich
I know all these problems with HRT isn't good.
I'm using the Evorel conti patch.  That wasn't that easy with all the side effects in the beginning.  Ripped the patches off many a time! 
I saw Professor Studd about 4 years ago, yes and it does cost about a £1000 with all the add on tests  I saw him twice and the regime he always prescribes is two pumps of estrogel, utrogestan for 7 days and testosterone gel.  I thought I was going to be fine but felt absolutely terrible for 3 months so had to stop that.  He had no alternatives really, he just said to have a hysterectomy and gave me a letter for my GP.  Not sure how I was supposed to get a hysterectomy on the NHS just because I can't used HRT.  So that was the end of that for a while and had to come off of all that.
I left it 6 months and then asked my GP if I could try the patches.  I know you have used those ones.  I've just found all this HRT thing really difficult.
Hope you are better soon.
xx

[Mary G]

It's a classic case of 'join the club'.  This is just my personal opinion but I think that if most of us (not all, I know some women love progesterone) could take oestrogen only HRT we would all have far fewer problems.  The progesterone part of HRT seems to be the deal breaker for so many women and there doesn't seem to be any viable alternative apart for the new Duavive so have a read up on that and decide if you think it is for you.

I am severely progesterone intolerant and not a very good example but that said, time and time again we have women on here experiencing problems with progesterone - not necessarily progesterone intolerant but having nasty side effects from it - and there doesn't seem to be any viable alternative apart from a hysterectomy - Professor Studd also suggested that option to me. 

So the stark choice is Duavive or oestrogen with a very low dose of cyclical progesterone (preferably vaginal) under supervision with regular uterine scans. 

It's about time something new came along.

[vickypk]

Hi MaryG
I haven't heard of Duavive, will look for information on that thanks.  Are you using HRT?
I'm definitely better with the patches, but always think there must be something better. 
I've been on the patches for two years, but over the past couple of months I feel a bit depressed again.  I've just moved from London to the coast so maybe it is that and I will settle down soon.
Vicky xx

[Mary G]

vickypk, yes, I am still on HRT, I couldn't function without it!  I've tried virtually everything there is but fall over on the progesterone component every time.  It's the great unanswerable question isn't it, what are you supposed to do if you can't tolerate any form of progesterone?

Luckily I have no problems with the oestrogen part of HRT since discovering Oestrogel and feel great on it.

Do read up on Duavive, I think it is very promising and will help a lot of women. 

[puddlesmum]

Professor Studd is about £300 hun, not £1000. I only had a phone consultation with him though because I'm housebound so didn't have any scans.

Hope you find relief. I'm still struggling myself.

x

[vickypk]

I visited his offices twice and the total of both appointments and blood tests etc easily came to a £1000 plus medication privately

[Meg]

Am so sad that we are in the position we are in at the moment on menopause.  I do not think that most women would wish to have bleeding for the remainder of their lives after their own cycles finish for various reasons.  At present there seems to be the routes of HRT, antidepressants, doing nothing or taking a few other alternatives which are not always successful!  I have heard that there is research going on into a new treatment for the debilitating hot sweats that cause so much distress.  I read that this was at one of the London teaching hospitals but it could be several years before it becomes available and I think it is only to control the sweating and not for moods which can be so problematic.  It is so puzzling why some women seem to suffer so much more than others. I can only hope that the future holds more promise.  Whatever pharmaceutical can crack this one would be onto a winner if it could be cost effective!

Meg

[Mary G]

Meg, well said, I think the choices we currently have on the progesterone side of HRT are pretty crap.  Duavive is something of a breakthrough but the oestrogen type/dose does not suit everyone.  I definitely don't want to have periods for the rest of my life and would consider having an endometrial ablation and doing a very long cycle with very minimal progesterone.  I have regular uterine scans so it shouldn't be a problem but in any case I am prepared to take the risk if it comes to it. 

[Hurdity]

Hi jillyrich

Sorry to hear you are still suffering. You should not have to pay for a private consultation and in any case we all know what John Studd is most likely to prescribe - estrogel 2 or 3 pumps together with 100 mg utrogestan days 1-7 of each calendar month and a blob of testosterone gel.  ....maybe??

I agree with Taz and peri that maybe a sequential regime would suit you better so that your bleed is predictable. When you started the estradot and utrogestan were you taking the Utro daily? If so no wonder you felt rough. Even women who are not progesterone intolerant may find this too much, because we have to take a much higher dose than our ovaries produce naturally as it is unstable in the system - but we need enough to protect the womb. Did you try it vaginally? Under supervision you can get away with a lower dose or longer cycle when used this way.

I know we all swear by the regime we are happy with ( and why not as this is what works for us?) but I have almost always used Estradot 50 mcg patches (+ a little bit!) cyclically with progesterone - latterly on a longer cycle of 6-8 weeks. Now in mid 60's and happy .  Could this be an option for you ie 50 mcg patches and start with utro monthly (vaginally) - at the licensed dose for 10-12 days - to see how your womb behaves and what sort of bleed you get. See how this goes for a few months and then hopefully reduce the progesterone or stretch the cycle until you settle on an ideal regime for your uterus. Can your doc agree to this in your position? You would need to be happy to put up with a bleed but hopefully more regular.

As an aside - personally I don't think Duavive is the answer, but more work on the SERMs in conjunction with another oestrogen could revolutionise HRT! Duavive is a fairly low dose oestrogen, it's a tablet (and therefore not suitable for you jillyrich with your medical history), and more to the point it is made from horse pee (like Premarin and Prempak) - ie it is conjugated equine oestrogens - and some women have an issue with that. Everyone should be aware of this in order for an informed choice to be made.

jillyrich do tell us what you decide?

Hurdity x

[GypsyRoseLee]

Hi

I saw Prof Studd for a 30 minute appointment which cost £300 + another £300 for bloods. He gave me a bone scan free of charge! I am on 4 pumps + 100mg of Utro on days 1-7 each calendar month + blob of testim gel. My first private prescription for 3 months cost roughly £56. But he then kindly wrote to my GP (free of charge again) requesting that I be prescribed his regime on the NHS and my GP was happy to do that.

[jillyrich]

And I'm back. Again! Just wanted to update and ask a little more advice pls.

After practically crying in the doctors surgery in January, she finally referred to what I thought was a specialist menopause clinic. The appointment has now come through for a couple of weeks time (hurrah) altho its actually just a gynae clinic (hmm).

Anyway, I am going to ask if I can try a long cycle.

I think I would be happier with a predictable bleed every x amount of weeks if it means I'm using less progesterone less often and will hopefully feel physically better in myself on the estrogen only time.

I would like to use the estradot  (which I know keeps my flushes etc under control) and also the Utrogestan for as short a time as possible, preferably so that I'm only having withdrawal bleeds every 8 or 10 or 12 weeks.

Does this sound like a reasonable request considering my history of trying other HRT's?

For you ladies that are on a long cycle - how long do you take the estrogen for (whether gel or patch etc) before you add in the progesterone? How long is your cycle?

I would like to be "armed" with as much info as I can when I go to my appointment so hopefully they will see I've done my research etc etc and will allow me to try a long cycle.

Thanks for reading, and looking forward to hearing from some of you.