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[rferdi]

I don't know where to start, but I do apologise beforehand for the long post.

Let's see... about 4 years ago the really bad symptoms began, I'm 52 years of age now. By really bad I mean disabling symptoms, such as palpitations, feeling my heart loudly thumping and throbbing all over my body violently (from the moment I woke up), hearing every heartbeat in my ears all the time, intense tingling in feet and hands that sometimes would spread all over my body and become numb, arms and legs feeling super-heavy, frequent dizziness and feeling sick, internal vibration, heart skipping beats all the time..

And then all the other more common symptoms that I won't go into as it would be a long list (both physical and emotional/psychological symptoms). Ironically the only thing I haven't had are hot flashes, not even one, ever!

To be honest my life had become hell, very difficult day to day. I had to stop working as it was impossible for me to have a normal routine, my days were sheer torture. It felt like someone had suddenly pressed a self-destruction button and my body and health was quickly deteriorating and falling apart before my eyes.

Needless to say I went to A & E or ER (here in Spain Urgencias) many times, thinking I was about to pass out and die or that my heart was about to explode. I've been to several doctors and specialists, done many blood labs, all the heart tests, and many more things... all came out normal.

Not one doctor, including three gynecologists (all from the Seguridad Social or NHS equivalent), ever suggested perimenopause.  I was convinced I had a very serious unknown illness, until after almost three years one day I began to suspect it might be something to do with my age and my hormones (imagine that!). So I embarked on some deep research into it, found a couple of private gynecologists who actually listened to me and suggested themselves it could be peri, and finally I got a prescription for HRT.

Tried Lenzetto 1 spray a day and 100mg Utrogestan every night for a month and didn't feel improvement in any of all those disturbing symptoms, although I did find I could sleep better, 5 hours in a row without having to get up to pee, which was a miracle at that point.

I went up to 2 sprays on the doctor's recommendation and I couldn't handle it, I felt super-anxious and hyper, and the other symptoms were still there. The doctor then told me to try a cyclical regime, but I was afraid. So I decided to only take progesterone, 100mg every night, tried it for a month, things overall seemed to improve slightly, with all the episodes and symptoms diminishing a bit in intensity and frequency. But just a bit.  So then I found a second gynecologist who prescribed Oestraclin 0.6mg/g gel (equivalent to Estrogel I believe) and same Utrogestan but also cyclic at 200mg for 12 days.

I was afraid again and what I did for the next month was to continue to take Utrogestan daily the 100mg plus a half a pump of Oestraclin gel which I believe is 1.25 mg estradiol daily as well. Over that month (June) I felt a bit better still, the worst symptoms and frequency diminished a bit more.

So for August I decided to finally lose the fear and try the cyclical regime, which I started 5 days ago, coinciding with the start of my period. I got on a full pump of the gel (2.5 mg estradiol) daily and no Utrogestan, which I'll start taking 200mg on about day 14 of my cycle.

So far I have to say the first 3 days of doing this I felt pretty great, for the first time in years I almost felt normal at times, no heart pounding, no tingling limbs, no heart skipping beats, no dizziness, no vibration, great sleep (amazingly I'm sleeping 7 hours straight!! I don't get up to pee for 7 hours!!).

However today for some reason I got up not feeling so well, with some pounding heart and tingling feet, heart beating in ears, quite groggy which is weird, and a bit dizzy. I've been like this all day, except the grogginess has disappeared. I wonder why this change, it was all going so well? Could it be that maybe today my natural levels of estradiol are either on a vey low level, or an extremely high level, and so the HRT estradiol is not helping? Could it be I must wait longer for my body to adapt and these changes are completely normal? Does anyone have any clues?

Also just to end this long post I'll say I've been a PCOS patient since I was 16, taking different types of medication since then, and I'd like to find other women with this condition going through perimenopause as well, to see how they're doing, as sometimes I wonder if the reason peri has hit me this hard is the fact I have PCOS.

Thanks so much if you've made it through the whole post, and even more if you reply!    Hugs to all.

[JS79]

Morning, sounds like a really tough time you've had the past few years.
Your story sounds very similar to mine. I was diagnosed with PCOS at age 23 after trying to conceive for a couple of years.
My peri symptoms started about 3yrs ago and were on and off but then in Dec 23 I was hit hard to the point I was convinced I was having a stroke or heart attack, my OH a paramedic so assured me I wasn't lol, but I had arm tingling and face tingling. I only turned 45 in March so my GP had previously said I was too young but after seeing a neurologist to be tested for MS he noticed my symptoms all got worse just before a period which could mean it was hormonal. Went back to GP with this and they offered me antidepressants!!! Went to Newson Health privately and was prescribed Oestrogel 2 pumps and after my next period I will take 2 utrogestan from day 14 for 14days. From the minute I had the consult I felt my positive pants were on, then much improved when I actually started hrt most of my symptoms were still there but much less increase until 2days ago when they have ramped up again but I'm due my period tomorrow.
They say give it 3months, some people do have instant improvements and some gradual over time and I'm guessing some may always have the rollercoaster of hormones.

[CLKD]

   it may also be that as your hormones rise and fall there may be a blip in your feelings on the regime.  Some find that keeping a mood/food/symptom diary of use.  Let us know how you get on. 

[rferdi]

@CLKD Thanks so much for your reply, in my case my period just ended yesterday so it may not be that symptoms get worse at the same time of the cycle for everyone. I've been writing a diary for the past couple of months and noticed how symptoms either came back or got much worse around ovulation, but I haven't really been able to pick up a steady pattern yet to know what days of my cycle I can expect this.

I wish I could have remote consultations at Newsom Health but they don't do overseas ones as far as I know. I think I've watched every interview/talk there is from Dr. Louise Newson. I'd be interested to know if you're still on any kind of treatment/medication to control your PCOS?

Last night it was a pretty rough night and many of my symptoms are back today as well. I'll wait for longer to see how this develops. I guess I have to be much more patient.

[CLKD]

Perhaps JS79 can answer your query about PCOS.

[rferdi]

  it may also be that as your hormones rise and fall there may be a blip in your feelings on the regime.  Some find that keeping a mood/food/symptom diary of use.  Let us know how you get on.

Thank you, I do keep a diary, just for the past couple of months. For now I'm going to persist in this new cyclical regime and see how it goes, patience is required I suppose. Last night and today symptoms came back quite strongly unfortunately. Let's see how this unfolds.

[CLKD]

Let us know how you get on?

[rferdi]

Perhaps JS79 can answer your query about PCOS.

Sorry, by mistake I sent you the reply I meant to send @JS79 !!!

[rferdi]

@JS79  Thanks so much for your earlier reply, in my case my period just ended yesterday so it may not be that symptoms get worse at the same time of the cycle for everyone. I've been writing a diary for the past couple of months and noticed how symptoms either came back or got much worse around ovulation, but I haven't really been able to pick up a steady pattern yet to know what days of my cycle I can expect this.

I wish I could have remote consultations at Newsom Health but they don't do overseas ones as far as I know. I think I've watched every interview/talk there is from Dr. Louise Newson. I'd be interested to know if you're still on any kind of treatment/medication to control your PCOS?

Last night it was a pretty rough night and many of my symptoms are back today as well. I'll wait for longer to see how this develops. I guess I have to be much more patient.

[CLKD]

It's known as menopause brain, you'll fit right in 

[JS79]

Hey Rferdu, I was never given meds for my PCOS except when I was having IVF and was given metformin. Since I had my son 15yrs I haven't had any scans or check ups for my PCOS, although I was having terrible pains last year so had an internal but all was normal for me.
I'm not sure if she does video consults for new patients abroad but email them and ask the question. I queried PCOS and my 6 attempts at IVF in regards to perimenopause but the consultant didn't know of any definitive research to suggest any links or worsening of symptoms.

[rferdi]

I see JS79, I've never had children myself but I'm sure had I wanted to then most likely would've had to go the same route as you. For me it was the ovarian cysts, irregular period, acne, etc. which never really went away, only improving whilst I took medication.

Yes I may email them and ask, but interesting to know your consultant didn't have any conclusive data about it. I'll keep looking, thanks!

[Pearg]

Oh my goodness your story sounds so much like mine! I had all of your symptoms and am off work as well as I literally have trouble concentrating and seeing straight it’s been hell ..
I was feeling fine 2 days ago and now that my period is ending my anxious back in full force.  I hired a UK doctor from Canada .. she is at the Harper Clinic in London and her name is Dr Harper .. 700.00 CDN but I couldn’t find help here .. you are not alone .. I also had suspected PCOS and have twins from IVF ..

[rferdi]

Hi Pearg, I'm sorry you've been going through perimenopause hell too. I wonder, could it be that PCOS is related with having extra horrendous peri symptoms? I'm trying to find out however all doctors I've asked so far just have no idea, which doesn't surprise me, since unfortunately most don't know much about menopause to begin with.

This month of August I started cyclical HRT and I've already been noticing some significant improvement in several of my worst symptoms, which is quite encouraging for me as I'm beginning to find some relief at last. I hope this is encouraging for you as well, and I hope you get the treatment that you need with Dr. Harper from London, it's an incredible shame that we have to resort to spending all this money in trying to get decent help. I'll keep this doctor in my list of possible near future consultations, thanks for letting me know.

[Pearg]

Yes we have to advocate for ourselves which I’ve learned .. can I ask what is cyclical HRT .. is it estrogen and progesterone only on certain days if your cycle?
My Dr said women who go through IVF can have an acceleration of stmpyfor menopause .. don’t know if this is related to PCOS.. I’m so happy to hear you are getting relief …