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[heavenlyblue]

Hi everyone

I joined last year but didn't post, I wish I had.  I naively thought my life would have improved by now as the NHS are there to help you, right?    I am astounded by the lack of knowledge my GPs have surrounding 'the change'.    This is rather long, make yourself a cuppa and put your feet up! 

Bit of background, I'm 53 and a half now.  I had anxiety and depression issues in my mid 40s after losing my mum suddenly.  Medication and counselling were a huge help.    But GP did not mention once I could be having peri-menopausals symptoms, which looking back, I'm sure I was.  I saw my GP a lot in my 40s but the peri-menopause was never mentioned, I feel I could have at least tried to prepare myself, if I'd known.

Background on my periods, was off the pill for about 6 years from 41-48 as we had been trying for baby which was unfortunately unsuccessful.  Another factor for my anxiety and depression.     I then had to go back on it at 48 as my periods were so bad, it was making me nauseous and dizzy.  So another reason I didn't see the peri coming, hadn't had a period for ages.
   
At 50 and a half, I had a 2 week migraine.  Nothing like I had experienced before, I'd only get them every now and then and they would only last a day.  This went on for days, my GP just signed me off for stress.  A week later, I woke up in the middle of the night on absolutely fire.  I knew immediately what was happening, I was so shocked, I really did not see it coming.   

I wanted to go natural, read everything I could, took all the supplements etc....came of the pill but the flushes and migraines got worse so 3 months in, the GP put me on Evoril Conti 50mcg.   2 months later I got a terrible migraine and my BP was up so GP took me off it and said I couldn't take it.  So I had a whole year of awful flushes, terrible migraines, fatigue, joint ache, dizziness.    So the GPs treated the migraines separately, with different medication but nothing worked.   They didn't seem to think the migraines and peri menopause were linked.  Which I could never understand.  They only started to get really bad once my hot flushes kicked in.

After a year, I saw the GP, and pleaded, they said as long as I monitored my blood pressure I could I go back on HRT, they started me on 25mcg then we upped to 50mcg, then 75mcg but went back to 50mcg.     Flushes eased off and migraines weren't as frequent so GP kept me on that, went on last March.  But this year, migraines are more frequent, they last 36 hours, I get at least 2 a month,  I throw up constantly, I can't take any time off work, otherwise I'd hardly be in work, so I am used to having my head down the toilet at work, its become part of my life.  I have to cancel so many appointments and miss so  many nice things with these 2 day migraines.  GP now wants me to take Topiramate, a daily preventative, it may make them less frequent but does not treat them when I get them.  But I still think its menopause related and really don't want to have to take something everything single day that still is not going to stop the horrendous pain.

Symptoms I've had since my peri menopausal hot flushes started

2 day Migraines
Occasional Vertigo with nausea (constantly throwing up - I live in the toilet at work some weeks)
Fatigue
Joint Pains
Itchy Skin (driving me nuts at night at the moment)
Insomnia
Low Moods
Occasional intermittent sharp pains in my right upper quadrant (ultrasound and blood tests came back normal)

Every time I see the GP about any of these, I just get medication relating to that symptom.  They never discuss that they may be symptoms of the peri menopause and look at the HRT I am having.  So I'm constantly at the GPs, taking different medication, having blood tests, scans etc....knowing they will come back as ok.    But I get 10 mins if I'm lucky. I see a different one every time and I'm never offered anything different to Evoril Conti.  I know that one size does not fit all so how come they don't??  Especially after reading this forum, and I have a couple of friends who had to try several things before finding the right thing.

My patches are about to run out and I see that there is a national shortage so I feel now would be a good time for me to bite the bullet and ask for a referral?  I just get the feeling I won't get one.   I see there is a BMS GP a few miles away but I have no idea how to get a referral if my GP won't help.  I would love to go private, but we've cleared out our savings recently re a shoulder injury I have, which has also effected my lack of sleep over the past 18 months.  Perhaps I will have to get a loan out.

I want to look forward to my future - not just resign myself that this is my life and health now.  I probably feel well about 25% of the time.  I feel envious of my 2 sisters, apart from hot flushes, they seem fine.  They are not on HRT.    And out of everyone I know, I'm the one that is ill the most.  I just hate being that person.   People just assume that I may not be able to come to everything as they know I'm 'always ill'.    I have a brilliant supportive partner but I've lost my libido and I'm obviously not the best company and he never complains about anything but I feel guilty all the time that our life isn't as enjoyable as it should be.  All these articles I read in my monthly Natural Health mag about how it's the best time of your life when you're through it, when will that be?  It shouldn't be looked at as a negative thing, etc etc.....and if you try all these things, you'll feel better.....  I am proud of myself though that I haven't gone back on ADs or anti anxiety meds, have no idea how I've managed that but I do have a great Counsellor and I do Mindfulness meditations.

Could the Evoril Conte just not be right for me?  Or are different Brands just the same, but a different name.  I have just passed my one year anniversary of No Bleed.  I had one bleed the year before that and one bleed the year before that.

What is the protocol for a referral? Can I insist or is it just luck of the drawer dependant on the GP/Surgery you see.  I would just love to be able to sit down with someone who will take the time to explain things to me and let me try more than one HRT to see what works for me.  This is never going to happen at my Surgery.  I have seen all the GPs there.

Supplements I take

B Complex '100'
Omegas
Vit D with K2
Magnesium

Medication I am taking currently (I have a lot of medication for when symptoms pop up intermittently)

2 x 30/500 Co-Codamol for my shoulder at night


Thank you for letting me get this off my chest.  You would have thought that seeing several different GPs for 3 years I would be sorted by now, wouldn't you.  I'm seeing a Functional GP/Herbalist next month that has been recommended to me, see if she can help, she has several tests she runs re food allergies, Digestive, Endocrine and Autoimmune, hormonal tests, thought it couldn't hurt!

Thanks for taking the time to read this xx

[CLKD]

Nope.  GPs have little or no idea and rarely Join the Dots!

....... and breath ;-).

Ask for a referral to a menopause clinic, not a gynaecologist as they often don't know much either  .  Your GP should be pleased that you are taking control of your health, this can be a learning curve for him/her too! 

Browse round.  Make notes.  Read the threads on bladder and vaginal atrophy.  Put the name of the HRT you have been taking and see what pops up.

There are several ways of delivering HRT and your GPs are negligent not to read up on current NICE standards!  Sadly this is not uncommon in the UK.

[CLKD]

And yes, this is your Life now: but it doesn't have to be forever!  Make a list of symptoms you would like to ease to take to the appt..

[bear]

Hi heavenlyblue,

Welcome! Oh dear, that's exactly what happened to me, except that I had migraines before perimenopause hit. I think you have answered your question, it's time to ask for a referral, as CLKD says, a menopause clinic, they will give you more HRT options, and yes, you're right, maybe Evorel doesn't suit you. I guess you're experiencing the late stages of perimenopause which are just awful, but they will pass. Oestrogen fluctuation is a well known trigger for migraines. I also tried HRT but it worsened migraines, so I ditched it. There any other options out there and I'm sure you will find something that suits you better, the shortages are a problem though. I have been through perimenopause hell but now I feel much better, I'm also 53 and a half.

BeaR.

[Bobidy]

Hi, if you see a private Menopause specialist you can usually self refer (I had to do this and it was the best thing I've ever done) x

[Hurdity]

Hi heavenlyblue

 

Sorry to hear about your horrendous and debilitating symptoms..

I'm not quite clear about your periods.

You went off Evorel conti for a year and took nothing or the mini pill? If nothing then did you get any bleeding during that year? Also you say you used different strength patches when you restarted HRT - what progestogen did you use during this time (while on 25 mcg m 50 mcg 75 mcg) and did you take it all the time?

Are you now on Evorel conti aagain nd how long have you been taking it this time round?

The answer is they are not all the same! Taking progestogens all the time can really affect some women so it maybe that you need to try something different? You could try a patch (or gel if 50 mcg does not resolve your symptoms) with separate progesterone like Utrogestan (micronised progesterone) which does not have the same side effects and you might tolerate it better?

All the oestrogens and progestogens are here:
https://www.menopausematters.co.uk/treatafter.php
https://www.menopausematters.co.uk/to_progestogens.php

If your doc is unable to help or prescribe anything different then you should be able to ask for a referral to your nearest (NHS) menopause clinic although there might be a bit of a wait. the BMS info should say whether private or NHS?

Sorry can't help with the migraines - I do get them but not frequently enough to need a preventive and I find sumatriptan controls them well. I get nausea but not vomiting and I really sympathise. There has been mention of Topmirate in the past so maybe go the the home page and do a search?

Hang in there and good luck with finding a better regime that suits you!

Hurdity x

[Mary G]

I'm so sorry to hear about your debilitating migraines.  I too started having silent migraines (aura without headache) at menopause and after many years and many consultations, it transpires that mine are caused by hormone instability and hormone fluctuations caused by too much progesterone.  I was able to cope with hormone fluctuations when I produced enough of my own but once I hit menopause, the hormonal imbalance triggered migraines.

Generally speaking, migraine with aura is caused by oestrogen spikes and migraine without aura is caused by progesterone spikes but in both cases, it is very important to get some stability and try to combat with highs and lows.  It's vital to find your migraine trigger.

I would suggest you start by seeing a hormonal migraine specialist and then proceed to a menopause/HRT specialist.  This is what I did and after way too long, I've managed to achieve hormonal stability but it's not easy.  It's a highly specialised area of medicine and it's important to get proper advice.

Feel free to send me a PM if you want details of the specialists I consulted.

I hope that helps.

[heavenlyblue]

Nope.  GPs have little or no idea and rarely Join the Dots!

....... and breath ;-).

Ask for a referral to a menopause clinic, not a gynaecologist as they often don't know much either  .  Your GP should be pleased that you are taking control of your health, this can be a learning curve for him/her too! 

Browse round.  Make notes.  Read the threads on bladder and vaginal atrophy.  Put the name of the HRT you have been taking and see what pops up.

There are several ways of delivering HRT and your GPs are negligent not to read up on current NICE standards!  Sadly this is not uncommon in the UK.

Thank you so much for replying.  I am going to try and get an appointment tomorrow or Friday, trouble is, it's a lottery which GP I get and some are definitely more easier to talk to than others.  Just not sure what to do if they tell me they don't think I need to be referred.   I am gathering up as much info as possible before I go, thank you again. x

[CLKD]

Tell them that you need a good answer why they won't refer you as you know your body and how would they like to have a split, torn, painful vagina/penis [appropriately] 

Maybe the Practice Nurse might be more clued up?

Let us know how you get on.

[heavenlyblue]

Hi heavenlyblue,

Welcome! Oh dear, that's exactly what happened to me, except that I had migraines before perimenopause hit. I think you have answered your question, it's time to ask for a referral, as CLKD says, a menopause clinic, they will give you more HRT options, and yes, you're right, maybe Evorel doesn't suit you. I guess you're experiencing the late stages of perimenopause which are just awful, but they will pass. Oestrogen fluctuation is a well known trigger for migraines. I also tried HRT but it worsened migraines, so I ditched it. There any other options out there and I'm sure you will find something that suits you better, the shortages are a problem though. I have been through perimenopause hell but now I feel much better, I'm also 53 and a half.

BeaR.

Hallo BeaR, thank you for replying.  I did have migraines before peri but they were nowhere near as bad or as long as they are now since peri hit.  I have no idea why all the GPs are treating my migraine separately to the menopause.  They were bad off it and are still bad on it.  I find it strange they have not mentioned referring me to a migraine specialist by now.  I feel I am just left floundering with it all.  x

[heavenlyblue]

Hi, if you see a private Menopause specialist you can usually self refer (I had to do this and it was the best thing I've ever done) x

It may have to come to that, probably have to sell some body parts first though!  Thanks for replying x

[heavenlyblue]

Hi heavenlyblue

 

Sorry to hear about your horrendous and debilitating symptoms..

I'm not quite clear about your periods.

You went off Evorel conti for a year and took nothing or the mini pill? If nothing then did you get any bleeding during that year? Also you say you used different strength patches when you restarted HRT - what progestogen did you use during this time (while on 25 mcg m 50 mcg 75 mcg) and did you take it all the time?

Are you now on Evorel conti aagain nd how long have you been taking it this time round?

The answer is they are not all the same! Taking progestogens all the time can really affect some women so it maybe that you need to try something different? You could try a patch (or gel if 50 mcg does not resolve your symptoms) with separate progesterone like Utrogestan (micronised progesterone) which does not have the same side effects and you might tolerate it better?

All the oestrogens and progestogens are here:
https://www.menopausematters.co.uk/treatafter.php
https://www.menopausematters.co.uk/to_progestogens.php

If your doc is unable to help or prescribe anything different then you should be able to ask for a referral to your nearest (NHS) menopause clinic although there might be a bit of a wait. the BMS info should say whether private or NHS?

Sorry can't help with the migraines - I do get them but not frequently enough to need a preventive and I find sumatriptan controls them well. I get nausea but not vomiting and I really sympathise. There has been mention of Topmirate in the past so maybe go the the home page and do a search?

Hang in there and good luck with finding a better regime that suits you!

Hurdity x

Morning Hurdity, many thanks for your detailed reply. 

After a few weeks of Evorel Conti patches, the migraines were worse & BP went up so I had to come off it for a year.   Was taking nothing at all.  Was not on the pill.  I had one bleed during that year.

I went back on Evorel Conti patches last Spring, taken all the time, these are the ingredients.

Evorel Conti patches have a surface area of 16 sq cm and contain 3.2 mg of estradiol (corresponding to a release of 50 micrograms per 24 hours), and 11.2 mg of norethisterone acetate (corresponding to a release of 170 micrograms per 24 hours)

You put on one patch, twice a week, every week.  I have officially just gone one year without a bleed.

That is all I have taken.  GPs don't seem interested to try me on anything else.  They think the migraines aren't related to the peri menopause so they keep giving me different medication for that, which isn't working.

I feel in limbo.  There are 2 issues here, my various symptoms re peri and the awful migraines.   I did have migraines before peri but they were nowhere near as bad.    I just want someone to take some time with me and try some different things.    The BMS GP closest to me is about 10 miles away at a Health Clinic and she is Private and NHS.

Thank you again x

[heavenlyblue]

I'm so sorry to hear about your debilitating migraines.  I too started having silent migraines (aura without headache) at menopause and after many years and many consultations, it transpires that mine are caused by hormone instability and hormone fluctuations caused by too much progesterone.  I was able to cope with hormone fluctuations when I produced enough of my own but once I hit menopause, the hormonal imbalance triggered migraines.

Generally speaking, migraine with aura is caused by oestrogen spikes and migraine without aura is caused by progesterone spikes but in both cases, it is very important to get some stability and try to combat with highs and lows.  It's vital to find your migraine trigger.

I would suggest you start by seeing a hormonal migraine specialist and then proceed to a menopause/HRT specialist.  This is what I did and after way too long, I've managed to achieve hormonal stability but it's not easy.  It's a highly specialised area of medicine and it's important to get proper advice.

Feel free to send me a PM if you want details of the specialists I consulted.

I hope that helps.

I am flummoxed why they haven't sent me to a Migraine Specialist but I assume a referral costs money and they want to try me out on as much medication as possible and see if one works?    Same with the Migraine Specialist I suppose except I have been given just one thing and it seems to be, that or nothing!

I don't really get an aura just awful throbbing pain which starts fairly quick and lasts around 36 hours with vomiting.  I am getting twice a month at the moment, they just rule my life.  Whenever I arrange something, its always in the back of my mind I know I may have to cancel it, which is so depressing!  Thank you for replying, I will bear that in mind re the Specialists, see what the GP says first! x

[CLKD]

I would be off Beachy Head with that 

 

[heavenlyblue]

I would be off Beachy Head with that 

 

You get used to it unfortunately!  My job is 'Front of House' so when I have one, I am forever in and out of the loo being sick, got quite used to hiding it and just getting on with it.  Though I would rather not have to.....