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[Armadillo]

Hello

Its been a while since i looked here . I've had my eyes closed hoping this train reck of perimenopause ends soon but scared of wha comes next.

In a nut shell my body is pretty wonky - chronic illness and disability.
Perimenopause joined in a royally mucked things up.. after a lot of help from GP and gynae and 'tryng and failing various hrt  options'  i am off book with 16 weeks estrogel and then add in 10 days of cyclogest.  (it is prescribed by hosp Gynae not GP)

The cyclogest is awful, it really screws with me physically and emotionally.  Day two here now and falling apart.. Pain sensivoty higher, disturbed sleep, sleepless ness, waking up, menal health (woah), constant nausea and cramps (flash backs to msicarriage ptsd trigger) hot flushes are worse, constant headache, insatiable cravings for starchy/salty food, loss of the little mobility energy i have.. by day 4 i am pretty much bed bound apart from loo trips and last time gave in at day 6.. i know i shouldnt need to protect uterus etc..

I dont know what to do... memory fuzzy but this current HRT has been a few years now.. had a few natural bleeds so was told i can skip cyclogest/progesterone but this time i need it...

We think i am about 5 years into perimenopause.. was hard to pinpoint start due to other conditions masking it.

How will i know when its over.. when will i be allowed to ditch the progesterone?  The estrogen is the only thing holding me together for the rest of the time.. otherwise i am crushed by peri.. i spent almost a year pretty much in bed falling out wheelchair before we realised what was going on..

I really cant face this..  i ahve a fatigue based disease anyway so 3-4 hours disturbed sleep is not doing me good, the nausea and headache is causing flashbacks, no idea whats going on with my mental health but fairly sure that i souldnt be seeing things and constantly anxious/terrified. 

I am so lost

My GP has been back in touch with Gynae.. its easier thatw ay as not really well enough for hospital appointments and due to other health stuff its all a bit triggering.. i trust my GP and gynae.. but the message was take progesterone, 5 days isnt enough must be 10.  I am scared of losing the estrogel if i dont.

But oh my I cant do this anymore.. life  is quite hard enough with my existing disabilities..

how do i know whenits over.. if the progesterone is triggering the periods will it keep doing so after my body has decided its time to stop

i am sorry to ramble.. complete mess.. but any help appreciated please

[Taz2]

I'm so sorry to read that you are still struggling with your health Armadillo. You know that we are all here for you so please don't think you have rambled on.

 I can't answer your question re the cyclogest and the way it makes you feel but, sadly, while you are using oestrogen you will always have to add in a progesterone in order to protect the womb lining. You have to do this even when post menopausal I'm afraid. The only way to use oestrogen alone is to have a hysterectomy which I know from your previous posts is not something you feel your body is strong enough to cope with.

Someone will be along soon with more helpful advice I'm sure. I just wanted you to know that you're not alone.

Taz x 

[Armadillo]

Thanks Taz.. i feel completely lost with this menopause stuff and then the rest of my health.. quality of life is not satisfactory shall we say.

Oh bother i had thought after menopause i could ditch the progesterone completely...

Hysterectomy is looking like a much better option.. its been mentioned by GP .. but gyane wasnt keen... rest of my health will kick off but perhaps thats the lesser demon.

I need this to stop ..

Life with HRT  wasnt manageable... the progesterone is awful and a huge struggle.. it feels like i am intentionally harming myself..

[Flossieteacake]

Hello Armadillo. I am so very sorry to read of all you are going through. I am wondering if you could try a different progesterone. For example 2 destrogestal pills is enough progesterone to protect your womb. It can take a while to find the right progesterone.

From what I have read about gynos, they do not know enough about menopause. I understand there is a long waiting list for a menopause clinic but perhaps it would be worth asking your GP to refer you to one. You can have phone appointments so you need not worry about having to go there in person.

It is so much harder when having a chronic illness too. I have MH issues and have found they have become worse with menopause so I really do sympathise.

It could also be you are progesterone intolerant. If you are then taking progesterone is bound to be making you feel unwell. I personally am progesterone intolerant. I have tried every type of progesterone and still waiting to see if I can tolerate one. I am on oestrogen only patch and waiting for my next appointment as to what I can do next. One thing I know is, if I take any progesterone my MH becomes intolerable.

I really am so very sorry you are feeling this way. I send a virtual hug.

[Kathleen]

Hello Armadillo

Like the other ladies I am so sorry that you are suffering.

 It may be worth emailing Dr Currie who is the consultant who established this site. Although your circumstances are unusual there must be other women who have faced similar problems and I imagine Dr Currie will be better placed to advise you. For example would it be possible to use the minimum prog but have frequent scans to check on your womb lining?

I am sorry that I can't be of more help but I hope you get the help that you need as soon as possible.

Wishing you well and sending hugs.

K.

[Marchlove]

Hi Armadillo

I’m so sorry to hear or your ongoing suffering with Cyclogest.

Flossie and Kathleen have given great advice regarding Dr Currie and a menopause clinic.

Is Cyclogest the only progesterone you have tried on this 16 week regime?  Perhaps a synthetic progestin might be more tolerable for you.  I’ve found this link which might help you look at other options.

https://www.aafp.org/pubs/afp/issues/2000/1015/p1839.html

I do so hope that you are able to get this sorted soon.  Sending hugs

M x

[CLKD]

Sorry to hear that you are feeling unwell with the treatment prescribed.  Is your Gynaecologist au fait with menopause because very often they have no idea! Is he/she in contact with a menopause specialist, I would ask to get the best overall knowledge possible.

There is a regime for a longer oestrogen programme with fewer days of progesterone, along with regular womb scans to check the lining isn't building up.  I think 5mm is about 'right'.  Without progesterone there is a risk of cancer.

When did you have your last period?  Some idea will give you a guide line as one goes 12 months without a bleed before 1 considers we are into menopause: literally the last monthly period.  Which symptom did you want to ease which encouraged you to try HRT?

That's the clinical side of things.  As suggested, ask for a synthetic progestin .  The other option of course is hysterectomy which is major surgery and may come with it's own problems.  You won't need progesterone but may require other HRT to keep oestrogen levels high enough to feel well.

Do consider sending an e-mail to Dr Currie.  A simple query will cost, details on the MM site; sorry don't know where 

Do U keep a mood/food/symptom diary to tick the better days?  It's easy to forget that there are some days where we feel less ill.  In the meantime, look for a dedicated menopause clinic within travelling distance and ring to see how long the waiting list might be. 

[Armadillo]

Thaks Everyone

Flossie teacake - yes we think i am progesterone intolerant .. sigh.  I have a lactose allergy which also limits my options but have tried various patches, pills and pessaries.. sigh. 

Menopause clinic .. i will look it up.  I assumed that gynae would have referred me on but maybe not.

Mental health is taking a hammering.. but intolerant to anti depressants too.. sadly one of the symptoms of my disease is weird reactions to meds.. and yep i get them.

Hang in there i hope you get an answer soon

------------------------

Hello Kathleen

Thank you.. I didnt know about emailing the Dr who started ths site I will try.

------------------

Marchlove..  thank you

I've lost my list but have been througha  few progesterones.. this one is pessary form  as was one of the others, tablets, patches too.. my body seems to have a problem with them

------------------------

CLKD

Last period was 16 weeks ago.. they seem to be holding pretty much to this pattern.  Just vary n intensity now.

I have been having an awful time with my periods since puberty but it was getting worse, and the cycle had gone from regular 28-31 days to as little as 15 days... it takes about a week for my health to stabilise from te exertion of dealing with a period so quality of life rubbish.. then hot flush, sweats (i need help to shower so extra inconvenient), scratchy skin, cognition, fatigue, tears, nausea, pain .. so exhausted i would be in bed loads more than my normal.

sadly my health is pretty shot long before menopause came along.. I rely on carers, wheelchairs and a lot of support for almost everything.. its grim

------------------------

thanks everyone.. i feel a complete lost cause .. and as i am already ill less of a priority to some as what does it matter if i lose function its nots not as if i am missing work, dont already have carers etc

its all a bit rubbish ..

will look at costs to email an enquiy to site dr an dmenopause clinic

[Flossieteacake]

Here is the link to email Dr Currie. It costs £30:
https://www.menopausematters.co.uk/contact.php

You are not a lost cause and it is horrible you are feeling this way. I understand what you mean in the sense you already feel awful and perhaps will not be taken seriously due to that. However, this sounds very different from the symptoms your chronic illness causes.

I think gynos tend to think they understand menopause and you would need to ask for the referral to a menopause clinic yourself. I think it would be worth trying. There are NHS ones so you do not have to pay anything.

Some people who cannot take progesterone will take oestrogen only and have regular scans to check their womb lining. I understand this may not be possible for you though.

[CLKD]

Sadly some consultants are reluctant to refer as they believe that they 'know it all'.  Sourcing support can be tiring especially when already feeling poorly.

Periods wax and wane as we go through peri.  My cycle was 10 days bleed, 10 off ............ I had a 28 day cycle for many years which went to a 32 day cycle.  Then I would miss weeks between bleeds. 

What side effects to you get from modern anti-depressant medication?  What have you tried and for how long?  The 1st 4 that I tried in the 1980s made me too nauseous to continue.  My Dad was prescribed what is now 'old' fashioned medication including librium to keep his manic depression stable. 

Many have problems with progesterone which is why a specific menopause clinician is important.  Perhaps ask your Consultant where he is getting his information and whether he seeks knowledge elsewhere?  My dental surgeon certainly does.

Do the various medics that you see confer with each other?  If not, it's time that they did so - that way everyone will be on the same page.

[Armadillo]

Thanks for link.. will have a think what I'd put in an email.

Menopause clinic is this something my GP refers me to or Hospital Gynae.

My GP has been supporting me ..gosh nearly 10 years with my ' complex health'.. I don't get appointments with him as often now but the other Drs and nurses at my surgery refer to him. He rings when I need him or to check things, often talks with my husband. I am lucky he also talks directly to the hospital consultants and organises things.. he is a real diamond.

Anti-ds.. oh I gave them a good go, limited by lactose allergy but tried different meds from the different groups.. I kept going for ages until my GP said it's probably time to stop now. Specialist pharmacists, psychiatrist all had a go too.
Reactions varied from paramedics needed to psychosis, to milder.. but I tried ..

My GP is never allowed to retire or move away 😉.

[Flossieteacake]

The GP should refer you not the gynnae.

It sounds like you have a lovely and supportive GP. I am so pleased to hear that.

[CLKD]

Like my dentist then Armadillo - we discussed retirement last night and he was told quite firmly, 'not yet' 

How R U this morning?

[Armadillo]

Thanks Flossie

CLKD haha but yes i agree.. the right medical team make this wonky life and apointments thing so much easier.

-----------------
Day 3 of progesterone now.. its easier to notice when i am not crying or asleep than when i am.. sigh.  Pain raising definite increase in the extra meds used for bad patches..but trying to pace myself... nausea.. brain is very foggy... feeing really cold too..   i am an absolute grump.   
Very anxious and twitchy.. home alone as my husband had to go to GP for himself and no PA/Carers available.. recruiting is impossible as wages naff... so grounded to bed until he returns.. but just had huge crying spell and want to seek reassurance in fridge.

This really does suck.. going to google nhs menopause clinics and see if one is nearby.. but worry about offending GP/Gynae as they are working hard to help me.. i am waiting on gynae to phone at some point.. GP requested a phone appointment.. they are meant to be face to face now.. but waiting list is unknown

grump, moan, cry, whine.

I am not this person

PS - just checked.. no menopause clinics here.. the one at our big hospital is part of oncology and i have met the lead gynae before, she works in same clinics as my chap who i was referred up to from her. 

[Flossieteacake]

You may not need to have a menopause clinic in your area if you can get a phone appointment. I would not worry about offending the gyno as although they are being helpful, they do not fully understand HRT and menopause. You need to get the best treatment you can for yourself.

Would you think of stopping the progesterone? I am concerned about your low mood. For me I am suicidal on it and had to stop for my wellbeing.