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[westie]

Morning ladies

Just need to get things off my chest about my menopause/HRT journey so far. I am in such a state today so forgive me if I appear to be rambling, I am not even sure what to say I can't seem to get my brain in gear.

So, long story short. Am 57 , 8 years post meno and started gel and utrogestan last July. Started on 2 pumps of and now upped to three , two in morning and one at night. Split the dose as I kept waking up with adrenaline surges and was thinking it might be a drop in oestrogen during the night. It has helped a little.

Utrogestan- I really think it is turning me into a mad woman. I take it vaginally on a cycle - 12 days 100mgs on advice from my gynae as have had an endometrial ablation and therefore although I still have a womb I have barely any womb lining. I get to day 4/5 and I have terrible panic attacks, severe anxiety about the most riidiculous things and the dreaded 4am adrenaline surges are back. This month I gave up at day ten as couldn't take anymore. Then I get really nasty withdrawal symptoms very similar to PMT. Oh and also tiny pimples on my face just to make me feel even lower😔

I used to get quite bad PMT during my reproductive years and had PND after my second son was born so I am thinking that my body really does not react well to progesterone. I cannot go on like this, I am even considering a hysterectomy to remove any need for the bloody stuff ( sorry to swear).

I have felt the benefit of the added oestrogen , it has helped my aches and pains and flushes but at the moment the downside of this HRT journey is by far outweighing the ups.

My doctor is one of those who thinks HRT is the devils work and won't even prescribe a 3 month supply of the gel without me making an appointment to have my blood pressure checked ( which has always been fine) and giving me a lecture about all the risks associated with it. It is all so demoralising.

I have been seen twice at Louise Newton's clinic who are great and am thinking of making another appt in next few weeks, although it is expensive and a two hour drive from my home.

I so want to feel better, not just on the odd day but preferably most of the time. I have tears rolling down my face as I type this, what a start to the weekend. I have a lovely understanding husband but I know this is as hard for him as it is for me.

Can someone give me some reassurance?

So sorry for the ramble.

W xx

[CLKD]

You ramble away!

Make an appt to see Dr Newson.  If you were travelling to a holiday, what's 2 hours ;-).  Take a diary of how you are: symptoms, food intake etc..  Make it clear which is the symptom that you would like to ease first.

Hyestertcomy is major surgery and may cause it's own problems.   Have you dropped into 'hyster-sisters' I think the site is called.

Also, change your GP?   He/she sounds really out of date. They are there to support not lecture!   

[Hurdity]

Hi westie

So sorry to hear you are struggling. Many of us feel like this on Utrogestan.

However - a very good alternative ( depending on how your bleeds are now) is to take it on a longer cycle like stellajane says, provided this does not make your bleeds heavier - and especially if you have had an endometrial ablation and your lining is very thin anyway.

By longer cycle I mean instead of the 28 day cycle (like when we're fertile) or monthly one that some women do, you extend it (gradually at first) to the length of time that means you shed your lining but doesn't cause any other issues re bleeding. This must be under medical supervision.

I have been on long cycle HRT for over 8 years (since September 2011) but I am on medium dose oestrogen. My cycle varies from 5 to 8 weeks depending on what I'm doing and when I'm going away. To achieve this I have taken 200 mg vaginally for 12 days. This means - like stellajane until recently - I continue to have a bleed even though I am mid 60's. Horrible I know but there is no palatable alternative ( stopping HRT, taking progesterone continuously are the alternatives). I endure both the progesterone and the withdrawal to give me those lovely weeks on oestrogen alone  .

Stellajane's suggestions of shorter duration progesterone each cycle is another option favoured by some gynaes - again only under medical supervision. I have never tried this as I do prefer to take it for the full duration to enable proper shedding of the lining. Short duration regimes can lead to build up of the lining although after an ablation maybe this is less of an issue.

Your GP is a separate issue. You absolutely should not have to pay to see a private gynae however good they are - you have mentioned the expense and you really do not need to pay for this. (CLKD!!) and I would always encourage womane to try to get the treatment that is their right, through the NHS. Can you go to another doctor in your practice specifically to consult re menopause and HRT? I go to my gynae GP specialist (NHS) where I live just about all things gynae but my regular doctor about other stuff (or whoever is available at the time). The Newson Clinic should in any case have written to your GP so that care can be handed over locally.

Just another point re PMT and PND. PMS can be caused by any or all of 3 hormone situations and sensitivities: fall in oestrogen (at end of cycle); progesterone withdrawal (at end of cycle); progesterone intolerance (usually most of the seocnd half of the cycle). Hormonal PND is not due to progesterone intolerance because you do not produce progesterone post-natally - until fertility resumes with ovulation. PND if hormonal and prolonged, is thought (especially by John Studd) to be largely due to fall in oestrogen since this remains low until ovulation and cycles resume.

I hope you feel better as the day goes on - although the weather is not conducive to that!!!

Hurdity x

[Kathleen]

Hello Westie

So sorry that you are feeling rough and I completely sympathise.

HRT was never that great for me, possibly because I never got the oestrogen right but it was the progesterone that really worried me.  I have been off all HRT for nearly eight months now and most physical symptoms have gone, even my VA is fine with only a small amount of YesVM twice daily. My moods however are still an issue and now I have hypothyroidism to contend with.

I'm sorry that I can't be of more help but perhaps Dr Newson will have a plan for you. There are plenty of us struggling with the same issues so the answer must be out there somewhere.

Wishing you well and sending hugs.

K.

[Mary G]

westie, I really do sympathise, I've been there myself and it's horrible.

I'm not progesterone intolerant but I got to the stage where I just couldn't take Utrogestan anymore because it was throwing my hormones out of kilter and causing migraines.   I was on the low dose 7 day 100mg Utrogestan regime for years but in the end I couldn't even handle that and I was also finding that periods were making me feel ill - I was 57 at the time.   Like you, I considered a hysterectomy but I decided to have one last ditch effort to find an alternative.   

I consulted my migraine specialist and long story short, it was decided I needed hormone stability and to avoid the seesawing hormones of a cycle.   I now use bespoke 50mg progesterone every day and separate oestrogen and testosterone.   I've been using this regime for nearly 18 months now and I'm pleased to say it's going extremely well with no side effects at all.

For me, Utrogestan was a case of wrong dose with the delivery system.

Obviously there is no guarantee this regime would work for you but it's worth considering.   Even if you are progesterone intolerant, you would probably be able to tolerate 50mg every day.

The other alternative is a low dose coil like the Jaydess but I'm not sure if this is possible after an ablation.

If all else fails, I'm afraid a hysterectomy is the only option.

[Starkitten]

Reading the above/previous very carefully as I am in the same situation almost exactly. What worries me a bit is that no one mentioned the coil at any stage as this, in desperation, is my next attempt to limit the progesterone still further and do away with the horrible process of shoving Utrogestan up every night, getting the most hideous "periods" ever on the 3 day break I have been told to take, and having to wear pads to soak up the stuff that falls out once, presumably, the blessed pill has melted away and needs to shed the excess!

The doc I see - in the next city from me because there seems nothing available in mine - told me that as soon as she hits the meno she is going to have a coil fitted. She said it lets out a much lower dose of progesterone (I am not sure about that?) than the single pill I insert each night and you also avoid all the fuss, and any bleeds. This in conjunction with the two pumps (one on each arm) of oestrogen I already use. Guess what - there is a three month waiting list for coils here - but this seemed the most sensible next move - but as I say, no one mentioned it. Would be so grateful for thoughts - and it might help previous poster?

[CLKD]

Sometimes as many ladies have found out, the way to get proper support regarding menopause requirements is to go privately. 

If a GP 'thinks that HRT is the Devil's work' they shouldn't be in practice.  It isn't up to a GP to tell a patient what they require, but to explain the whys and wherefores and refer accordingly.  If the Practice is non-menopause treatment lead then what's a patient to do?  Once seen by a menopause clinic or by a private specialist one can return to the GP with a prescription.

[Sooze]

Westie,
So sorry you're having such a hard time.  I'm pretty close to your age and post meno and it is so difficult getting a 'balance'.

I tried continuous Utrogestan both orally and vaginally initially when I switched to gel (Sandrena 1mg) and didn't feel 'right'.  My gynaecologist OK'd me trying Utrogestan vaginally on alternate days because my uterine lining was very thin, and because I don't need higher oestrogen to control my symptoms. This has been the magic recipe for me (plus testosterone), for the past year.

It's really very surprising the reduction in side effects to almost zero by taking Utrogestan vaginally on alternate days compared to every day for me. I've also had no bleeding, besides spotting in the first 6m, which was expected and settled spontaneously.

I'm not sure whether your GP would be OK with you trying this regime, and you might need to drop your oestrogen to facilitate it, but it might be worth asking?

Incidentally I had adrenaline surges when I was taking Utrogestan every day and I've only had 1 in the past year (when I accidentally dosed on 2 consecutive days) so for me it's linked to the Utrogestan. I've not changed my dose of Sandrena at all since I switched to gel.
HTH,
S x
 

[Mary G]

Starkitten, I did mention the Jaydess coil in my post.

Personally, this is what I would opt for rather than the higher dose Mirena coil which caused migraines for me once menopausal.  A Jaydess is a good option for those who are progesterone intolerant or have a history of migraines.

It does mean having a yearly transvaginal uterine scan but so what?   Surely it's less drastic than a hysterectomy and better than living with an HRT regime that is making your life a misery.

[westie]

Hello again and thank you all so much for your replies.

So sorry you  have had similar problems Stellajane, I hope life improves for you and you can find a way out of this minefield.
I haven't tried another progesterone as I like the idea of the body identical and am concerned that a more synthetic one could be worse! I can't have a coil because of the ablation ( scar tissue in womb so no room for anything else).

I have decided to book another appointment at the Newson Clinic. I take your point Hurdity about getting help via NHS and I agree with you however there is a three month waiting list in our area and I really don't want to feel like I do for that long. The reason my gynae doesn't like the idea of me taking progesterone continuously is because of the ablation ,there is apparently a small risk of my womb atrophying which has its own problems. On the plus side, and this is the only plus, I don't get a bleed at all as there is virtually no womb lining there. At my last visit to Newson Clinic my oestrogen levels were only at 198 which is why I upped from 2 pumps to 3. This has kept my symptoms under control and made me feel so much better until the flipping utrogestan kicks in and messes everything up! I will discuss the possibility of a longer cycle as you suggest not least because it is my husbands 60th Birthday-in a few weeks and I could do without feeling so rubbish.

Birdy, thank you for your advice re cortisol.that is definitely what seems to be happening to me so yes am another one of the unfortunate ones. Am so sorry you have also had such a horrible time, it feels so isolating doesn't it? Glad you have found a better way forward and hope you continue to improve.

On the exercise front, I walk my lovely dog each morning for an hour and follow up with half an hour of Pilates stretches. I also do a Pilates class once, sometimes twice a week'.i also like to ride my bike although lately with this weather it has been almost impossible! I love to cook and really watch my sugar intake, only have one coffee a day ( in the morning) and rarely drink alcohol these days as it really was a symptom trigger. I also take magnesium, Vit d and Vit k as well as a multi vitamin.So I am trying to do all the right things but sometimes it feels like I am wading through treacle.

Kathleen, sorry you now have hypothyroidism, it must feel like one thing after another! Hope you can get that settled soon.

Mary G do you mind me asking how you get your 50mg of progesterone? Is it a bespoke prescription?

Snooze, very reassuring to hear that your adrenaline surges have stopped by doing alternate days, hope that continues to be the solution for you.

CKLD my GP hasn,t actually said that HRT is the devils work, I can just tell by her attitude!

Anyway, sorry again for the long post but I really wanted to say thanks for all your responses and support, I really appreciate it.

I will let you know how it goes at my appointment.

W xx

[CLKD]

AAAHh - making assumptions 

At least my GP is open.  If he doesn't like something we discuss.  I never feel rushed even though it's supposedly a 10min appts.

Let us know how you get on? It's worth getting an update from Dr Newson for peace of mind.  I have no problems paying for health/dental care if it is quicker and more informative than waiting around. 

[Mary G]

westie, I get my bespoke (aka compounded) progesterone from a private clinic in London but if you Google it, you will find clinics that prescribe it near to where you live.   The actual product costs ?1.00 per day, the initial consultation was ?300 and the annual follow up costs ?140 and they supply a prescription for the whole year.   It's not cheap but in my case it's worth it to feel well and apart from a hysterectomy, I had no other option.

I don't think the Newson Clinic prescribe bespoke progesterone but you could ask.   

I agree with CLKD, there's nothing wrong with seeking help privately, particularly when you have an unhelpful and anti HRT GP.   Three months is a long time to wait for an appointment at a menopause clinic when you are feeling terrible.

[Nairn]

Hi Westie

So sorry to hear how rubbish you are feeling, good advice from the lovely ladies in the forum.

My experience was that at 52, I was put on 2 pumps of gel/Utrogestan 100mg daily, combo last October, after a 4 month HRT break, and whilst the gel fixed the sleep, hot flushes and night sweats, the Utrogestan had a really bad effect on me.  It made me feel very emotional all of the time, I was an absolute horror with my husband, and also made me paranoid.  At the same time when I was not feeling out of control, I felt 'drugged? and sedated so could not concentrate on anything and was struggling at work, and on top of that I was retaining a lot of water so really sore joints - incredibly awful combination.  Felt mega stressed and anxious all the time, with lots of crying.  I tried for 3 months taking the Utrogestan orally, then switched to inserting for 2 months, which was slightly better with the above symptoms, but the tablets irritated my skin so I was then constantly sore down below. I know it's definitely the Utro as I stopped for a few weeks and carried on taking the gel and life improved dramatically.  Unfortunately that could not continue as I need progesterone as I had a lining build up, and still have all of my bits and pieces.  Coil has not been possible for me.

I saw the consultant last week, who reassured me that a number of ladies can't tolerate the utro, and I have now switched to Femonston conti tablets, combined with vagifem every night.  Oral tablets are not ideal but patches are just not available in my area, and the consultant thought that the progesterone in the Femonston would be better, as previously I did very well on Femonston 2/10.  I'm only 5 days in but feeling a positive difference already, I feel like I have had a major energy injection and for the first times in ages have clarity of thought and don't feel like an emotional basket case!

I have really struggled with the last few months, as the gel/Utrogestan combo suits so many ladies and it's meant to be the gold standard, so I desperately wanted it to work for me, and felt like a failure that it did not, but after 5 months have come to the conclusion that it's not for me. 

In terms of your GP, I think you need to find another one, depending on where you live you should be able to join another practice and find a mature lady GP, ask around and look at their websites - it's quite a simple process and the new practice do the paper work so you don't have to have any awkward conversations.  I got referred to the consultant via my GP, a long wait but worth it, and the meno consultant is not in gynaecology but in the sexual health dept.

Just remember you have the control in these things, although hard to remember that when you are feeling so rotten.  Take care xx

[Mary G]

Stellajane, thanks for being happy for me but I'm not sure why you are not convinced about compounded hormones.  I've been using Oestrogel, testosterone along side bespoke 50mg progesterone - which is like using a 50mg dose of Utrogestan - for nearly 18 months with no bleeds, no side effects and uterine scans showing a womb lining measurement of 3.3mm.  What's not to like apart from the cost?

Obviously I would never suggest bespoke hormones as a first port of call or to anyone who is happy with conventional HRT but what about the women on here who are at the end of the road with progesterone?  What about all the women who end up ditching HRT altogether because they can't stand the progesterone phase and/or the bleeds any longer?   

I honestly feel duty bound to put my regime out there as an option and some will be interested and some will dismiss it but I might just be able to help some women who are really struggling.

I was faced with a situation where I could never take Utrogestan again, all forms of synthetic progesterone (including the Mirena and Jaydess coil) were out of the question and my migraine specialist said I had to stop having a cycle and needed hormone stability.   Apart from having a hysterectomy, what were my options?

The progesterone component of HRT is very definitely the Achilles heel of HRT and needs urgent attention.

[westie]

Thank you nairnacat and Stella Jane for your replies.

Stelllajane i agree that if I am to continue on HRT, a long cycle has to be the way to go but I also need to sort out the type of progesterone and need to speak with someone who knows what they are on about. Clearly that person is not my GP! But I don't want to give up yet so i?ll persevere.

Nairncat I am so glad that you have hopefully found a way forward, I am hoping I can too. Am beginning to think that like you the gel/ utrogestan may not suit me as well as it does others. Maybe I am still not absorbing enough oestrogen and that is why I have such a bad reaction to the utrogestan. It is all about balance I know and what suits one person may not suit another. I definitely am a way off finding the right balance for me but I am determined to get there.

This forum is a godsend isn't it? Don't know where I would be without it.

Thanks again
W x