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[PollyH]

Hi all

I posted in June re '5 weeks off HRT -symptoms back'. This is an update from seeing the specialist last Thursday. I had to put a patch back on because I felt so ill after 5 weeks and I was going on holiday and thought I would wait to see the specialist.

I was trying to come off HRT because I can't tolerate progestogen and a hysterectomy is a last resort ( see previous thread).

when I saw the specialist last Thursday I had been back on hrt patches for about three weeks (just estrogen - estradot 50) I felt fine. He said I could stay on them without progestogen and have three monthly scans to check my womb lining. Since Monday this week I have been going downhill. I just feel like I need a bleed - I'm crying every day - period pain - waking early - feel down - feel worked up - WHat do I do now? This doesn't work?

Don't know how much more I can take of this - going on for 9 years.
Any advice would be really helpful.

Thank you Ivor listening

PollyH
Xx





 

[Joyce]

Just wanted to give a 

I'm only on oestrogen after hysterectomy, many years ago, so not sure about the progesterone side of things.  Though a few years back I had an 8 month HRT break. It was truly awful. Not sure why your GP would agree to one without the other.

[Gill Mojo]

On a purely detached front (haven't and don't intend to use HRT if I can help it) I would go out there and be a nuisance. Keep going back to your GP, keep explaining what is going wrong for you (writing it all down and taking your notes with you is always a good ploy if you tend to fluster, as many of us do at this stage in life), and if you aren't satisfied with the results, badger him/her for a referral to someone who can help you. Don't be intimidated, don't back-off and be fobbed off; just keep battling until you get the treatment you need and can start to feel better, more like yourself. Maybe take someone with you for a bit of moral support when you go?

I wish you well xx

[CLKD]

I'm sure Hurdity will be along with advice - which part of the HRT cycle don't you get on with?  I would give the Specialist a phone call next week and ask if you need a hike in the prescription.  One usually has progesterone in order to cleanse the womb hence the suggestion of scans every 3 months but that seems to often to me.  What will the Specialist suggest should you get womb thickening?  Is this a private appt. or NHS Specialist?

Maybe your own hormones are taking part in all this and over-riding the HRT?

[Mary G]

PolyH, I know how you feel because I can't tolerate synthetic progesterone either - I never had any problems with the natural type that I produced myself but I really don't get on with any of the progesterone used in HRT and that goes for utrogestan (the one closest to our own) as well.

It is a really difficult one.  I have spoken to the specialist about it and also Dr. Currie and there are no easy solutions.  At the moment, I am struggling through by limiting the progesterone use right down to a few 100mg capsules of utrogestan (taken vaginally) about every 5 weeks because if I leave it any longer and try to create a longer cycle, I get a normal period (volume wise) but over two weeks and it's annoying.  Last month, I took two 100mg capsules vaginally and got a normal period and I will take a bit more next month and see how I get on - I have womb scans annually and all is OK at the moment.  Have you tried taking the utrogestan vaginally?  Do you mind me asking what form your progesterone intolerance takes?  I get silent migraines (without headache) which consist of migraine aura (disturbed vision) for 25 minutes which leave me feeling spaced out, it's horrible.  From my experience, if you "need" to bleed, that in itself causes unpleasant side effects like dizziness, could this be your problem?  By the way, I take three measures of Estrogel every day and also a small dose of testosterone.

I am running out of ideas on this one and might also have to consider a hysterectomy. 

[PollyH]

Thank you all so much for your replies and I am so so sorry that I havnt got back - just couldn't seem to face it - tried ignoring it  hoping it will all go away but it's not.

Hi cubagirl - he's hoping I can just take estrogen because I have tried every progestogen going and it makes me feel too ill - that bad that I am off work with it  - a hysterectomy is the last resort so he says, but I am not feeling good on the estrogen only cus I feel like I need a bleed - am crying at anything feel so insecure and nervous in my stomach like everything is too much.

Hi Gill mojo thanks for the reply - I intend to ring the clinic this week - I can't carry on like this.

Hi Clkd - This is NHS treatment but he also does private - I don't know why I agreed to this cus surely the womb lining is gonna build up - I just don't get it - I was talking to somebody at work and they had their womb lining removed - anybody heard of that before. Thanks for replying.

Hi Mary G - I'm not glad that you can't tolerate progestogen -  but it's nice to know somebody has exactly the same problem. I was taking 75mcg estradot and only managing to take 1 or 2 sometimes 3 of 100mg Utrogestan vaginally - I felt so tired and brain dead followed by bad pmt - anxiety and feelings of being overwhelmed- then finally a bleed - and even then after maybe two days bleed - it seemed to take me another week to get over that - just couldn't cope with anything. Was off work five weeks in March this year. Has Dr currie no more suggestions? I think I'm gonna have to have hysterectomy cus I can't cope without it I've tried - or maybe my womb lining removed - will ak wen I see the specialist and keep you posted.

Thank you all
Polly H

[CLKD]

I think that progesterone is given to encourage the womb to shed it's lining or maybe a D&C is necessary? If you do a search for progesterone you'll find lots of info.!

[Taz2]

I think you are talking about an ablation Polly which is used to control heavy periods? http://www.nhs.uk/Conditions/Periods-heavy/Pages/Treatment.aspx

I found that the progesterone part of HRT gave me exactly the same PMT type symptoms which I'd suffered with for years so it wasn't much different. I just clung on to the knowledge that once my period started the depression and horrible mood would lift. Have you tried different progesterones?

Taz x

[Spangles]

Hi
Sorry you are having issues with the progesterone. I had an ablation 3.5years ago, yet the docs still wants me to take progesterone, I'm almost certain that I don't need to take it as often as I do. I am due for a scan as I've not had one so hopefully it will tell me what I already know, that my lining is miniscule (I know because of what I lose each month), so why have me on 200mg utrogestan for 12 days per month? Some times it would do the doctors good to actually listen to us women, they may actually learn something! I really hope you get sorted soon Polly. Do let us know how you get on.
Shellb
xXx

[Mrs January]

Hi Honey

I can't take oral Progesterone either it just takes me all over the place. However I have a mirena coil and a small top up of oral Oestrogen of 1mg daily.

Would it be an option for you? Hysterectomy is  a big op and then recovery time,

For now millions of hugs

Mrs January xxx

[GypsyRoseLee]

Hi Shelb - I'm the same. I've only been on HRT for 4 months. Estradot 50mg with separate Utrogestan 200mg for 12 days. But my withdrawls bleeds are very light and barely last 3 days, if that. It's more like spotting than a period.

Before I started HRT my own periods had become very light too. So I'm wondering if I really need to take 200mg of Utro for 12 days per month? I don't feel too bad on it, but it does make me feel very tired. My withdrawl bleed starts within 36 hours of stopping Utro and only lasts 2-3 days, then as my withdrawl bleed ends I seem to get a real mood dip and insomnia too, and I think this is progesterone withdrawl.

[Night_Owl]

Hi PollyH - we may have spoken before - please excuse any repetition.

Snap - I'm highly prog intolerant - so you have my sympathies - I know what despair you are going through - I've also been on this mad HRT merry-go-round for c. 8 years, been through the spectrum of progesterones and turned down Mirena and hyster - my fear with hyster is swapping one set of problems for another, which can happen - or finding that after having hyster and being on estro only that I still feel just as bad or worse, eeeek!

Quite a few times I've tried to come off HRT due to prog intolerance - but each time I have to go back on as I also get so ill, can't stop crying etc etc, you know how it is.  However, I also don't feel that great on the patch - but much much worse off it and realise that more than anything my brain needs the estrogen.  Caught between a rock and a hard place.

Utro use always makes me feel ghastly and is different each time - this time I felt really exhausted and hideous on days 1 to 3, then had a migraine, then managed to carry on.  I take the lower Utro 100, v-route.  It's far from ideal.

My first thought is - could reduce your patch?

I know the strung out, depressed, agitated feeling of needing to have a bleed - I'm on only ultra low patch, *half* of Estraderm 25 - recently the meno clinic said I could go 12 weeks between taking Utro - but I could only last 10 weeks as I felt like what you're describing - needing a bleed, estrogen overload.  This is just me though and somebody else may be fine on such a low dose without taking prog.   There is such a patch used in USA - Menostar 14 mcg applied once weekly, no progesterone.

If you were on a lower dose patch, say 25 - or less - you may have to compromise in terms of only partial symptom control (as I do) but the pay off is that you may not get the 'overload'.  If having regular endo scans is not a problem then it could be a way forward.

How are you feeling now?


Night_Owl
x

[Mary G]

Polly, I have also thought about having an ablation and I think I will start a new thread on that topic because it would be very interesting to hear from all those ladies who have had one.  I have heard that you still need to take the wretched progesterone afterwards but I find it hard to believe that you need to take as much and at least you would have either a very light period or no period at all.  Surely it has to be worth a try?

By the way, I had an "off the record" conversation with my gyno re progesterone doses and she said that one size does not fit all and not all women need high doses of progesterone but they have to tow the party line as medics and tell everyone to take the same amount but it is often much more than you actually need. 

Dr. Currie recommended I try the Mirena coil again but that is no good for me because I had one before for contraception purposes and it gave me migraines before a period.  Having read up on progestin intolerance extensively, it would appear that once I was perimenopause (which I didn't actually know at the time) the artificial progestin in the Mirena started to override my own natural progesterone that I produced myself hence the migraines.  I never did get on with the pill or the Mirena before the menopause but I didn't get migraines - that would explain why.  Synthetic progestins are nothing like the progesterone you produce yourself and they react very differently in our bodies which would explain a lot.

Will start an ablation thread.

[PollyH]

Hi All

Once again thank you all for the replies - your sympathies and understanding make all the difference. I also send hugs and sympathy to u all too.

Here is the update - well I haven't gone to work today - tried to go twice but couldn't face it - very weepy brain dead and period pain - so doesn't look like I can take estrogen only as I NEED A BLEED. Decided to ring the clinic to see if I can see the specialist sooner and luckily someone has cancelled so I can go on Thursday. My options really are running out - I just want my womb gone - I've had enough of messing with doses and never knowing where I am.

I read the new thread that Mary G started about ablation for progestogen intolerant women but even that sounds dodgy - think hysterectomy is my only option left - unless anyone has any other ideas.

Kind wishes

PollyH

[CLKD]

It is a huge operation and not to be considered lightly.  Let us know what the suggestion is on Thursday.  Make sure that you know what to expect and what treatments to ease any symptoms i.e. wind, that is available post op.!