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[Peri-wrecked]

Just need to rant and vent.   I am so fed up with symptoms.  Today's symptoms are tight throat, dry nose and throat, fuzzy head, blurred vision, pain under ribs, numbness in finger, feeling down and just fed up with it all. Not to mention dry hair, skin in bits and spare tyre around waist.  I've been dealing with an array of symptoms since about 2014/2015.  I am almost 38 and got diagnosed with POI premature ovarian insufficiency last year-after spending the previous few years trying to convince doctors my issues were hormonal. I've had every test under the sun for an array of illness and all have come back fine, Thank God.  Yet, I still feel sick and miserable.  I am not on HRT because my gynaecologist/ menopause doctor refused to give me any until I had heart check ups- yet failed to tell me she had put me on waiting list that was 2-3 years long for those check ups.  I recently managed to get checks done as I had slightly elevated blood pressure (which they now think was white coat syndrome).  My cardiologist said he would write to my menopause doctor saying I was ok to have HRT.  I've yet to hear from them.  I rang twice, but hope to hear something tomorrow.  I am terrified to take HRT because when I first started having menopausal symptoms was when I came off birth control in aged 32/33, within a month I was suffering from panic attacks that I never suffered from before.  it was down hill from there. I am now semi stable and not on any medication, once I convinced myself this was hormonal and got clarification last year I kind of accepted this was the new normal for me.  But, I just miss my old happy self. I have a sister who seems to be floating through her transition, and I am so jealous. my mom took st john's wort when she had hers and she was also on the mirena coil but I don't recall her being bad, although my sister says she was very bad. I think I've gone off track with my rant  ::)I guess i am looking for positive feedback regarding taking HRT.My sister has a friend who took hrt for 10 years and said it was the best thing ever and she came off it last year and no symtoms returned.  She was fine.I know everybody is different but i wish i had a magic wand to get me somewhere like  used to be.  I know they dont call it the change for nothing but this sucks big time. 

[Mary G]

My advice is don't hang around waiting for this doctor for too long, life's too short.

In your situation ie POI, I would make sure that whoever prescribes your HRT knows exactly what they are doing and specialises in that area of medicine.  Early menopause, surgical menopause and reproductive depression need proper, targeted treatment and you don't want a doctor who just randomly plucks any old form of HRT out of the air.  You are far too young to be without oestrogen so you need to get started with HRT as soon as possible.

I hope you can get the help you need. 

[Peri-wrecked]

Hi Mary G,  thank you for replying.  I will definitely be ringing them again tomorrow.  Unfortunately, the doctor who diagnosed my POI isn't known for her beside manner.  I almost didn't get diagnosed at all. it took a test to check my ovarian reserve to actually diagnose it as my hormone tests didn't show it. Mind you they never tested my hormone on days that are recommended such as day 3 of cycle etc.  when she finally diagnosed me last year, I was so relieved as I was fobbed off so many times saying I was too young.  I am terriefied of the effects HRT might have on my mental health but I am so fed up now that I think I should give it a go.
thank you again for replying.  I am sure my doctor has many years of practice under her belt so hopefully I will be put on the right regime for me.  Fingers crossed anyway.

[CLKD]

Have you looked at the Daisy web-site?

Make a list of how you feel 2 take to the appt.. Let us know how you get on!

[Hurdity]

Hi Peri-wrecked

So sorry to hear about your POI and lack of suitable advice and treatment from doctors.

What have your periods been doing since you came off BC in your early 30's? Yes the NICE Guidelines say that tests should be done on Day 3-5 of your cycle and there should be two tests 4-6 weeks apart. If you're not having a cycle then that should also be a guide although docs of course want to rule out other causes but this should not take 6 years!!!

If your periods have all but stopped then your oestrogen will be low and it is vital that you start HRT. Not sure why HRT terrified you as it sounds like you got symptoms when you stopped the BC? Please don't be worried. If your menopausal status suggests you need it then you must have it to protect you future health. It is more likely to help your mental health than hinder it. Low oestrogen is known for causing low mood and that is the last thing you want at your age. It may be that you will need quite a high dose of oestrogen at your age to feel well?

Do you still want birth control?

If so there are a couple of BC pills which contain bio-identical oestrogen which is different from the strong synthetic oestrogen of most BC pills (Qlaira and Zoely). Alternatively there is the Mirena coil, and you could then take oestrogen in the form of patch or gel at whatever dose you need to relieve symptoms as well as protect your bones.

I presume you've had blood tests to check out if anything else is causing your symptoms eg dietary deficiencies, thyroid problems etc?

All the best and let us know how you get on. Read as much as you can!

Hurdity x

[Peri-wrecked]

Have you looked at the Daisy web-site?

Make a list of how you feel 2 take to the appt.. Let us know how you get on!

Thank you CKLD.  I will be sure to update once I get through to them tomorrow.  It certainly is a rough ride.

[shoppingqueen]

Hi
Sorry you are feeling so unwell.
Have you had the thyroid checked? Your symptoms sound similar to those of an under active thyroid?? I know Hurdity mentioned this. Sometimes, the symptoms are very similar to menopause.
Xx

[Peri-wrecked]

Hi Peri-wrecked

So sorry to hear about your POI and lack of suitable advice and treatment from doctors.

What have your periods been doing since you came off BC in your early 30's? Yes the NICE Guidelines say that tests should be done on Day 3-5 of your cycle and there should be two tests 4-6 weeks apart. If you're not having a cycle then that should also be a guide although docs of course want to rule out other causes but this should not take 6 years!!!

If your periods have all but stopped then your oestrogen will be low and it is vital that you start HRT. Not sure why HRT terrified you as it sounds like you got symptoms when you stopped the BC? Please don't be worried. If your menopausal status suggests you need it then you must have it to protect you future health. It is more likely to help your mental health than hinder it. Low oestrogen is known for causing low mood and that is the last thing you want at your age. It may be that you will need quite a high dose of oestrogen at your age to feel well?

Do you still want birth control?

If so there are a couple of BC pills which contain bio-identical oestrogen which is different from the strong synthetic oestrogen of most BC pills (Qlaira and Zoely). Alternatively there is the Mirena coil, and you could then take oestrogen in the form of patch or gel at whatever dose you need to relieve symptoms as well as protect your bones.

I presume you've had blood tests to check out if anything else is causing your symptoms eg dietary deficiencies, thyroid problems etc?

All the best and let us know how you get on. Read as much as you can!

Hurdity x

Thanks Hurdity for your reply.  I do still get cycles but very light, not worth talking about really. They vary from 24 days to 31 days.When I came off birth control I didn't a cycle for almost a year.  I did have an array of tests over the last few years and I was passed from consultant to consultant.  I've seen every doctor from ENT, Rhuematologist, GI, and gyncologist.  I've had MRI's, x-rays, dexa scans, heart scans, stress tests and angiogram even.
I don't think I need it for birth control purposes as I have very little eggs left and I am not in a relation and it is highly unlikely that I will find somebody now with this social distancing etc. I wouldn't take the chance.

I just want relief from these symptoms. I feel like I've been dragging myself through life and as I have no crystal ball to find out how long this will go on for, I feel I need to try something.  I did try birth control was it 2 years ago again (I'm useless with remembering time scales) and I broke out in hives from it.  I kept taking it and the hives got worse and worse, my legs were destroyed in hives and my arms.  Doctors refused to believe the birth control was at fault so I kept taking it until one day I just said enough was enough and I stopped it and sure enough the hives started to clear.  hives was listed as one of the rare side effects on the leaflet and I showed that to the doctors and they still didn't believe it was at fault.  So, I guess I'm sensitive to some medications or their components.


Thank you again for replying.  I will let you all know how I get on. Hopefully I will have good news in the future.   

[Peri-wrecked]

Hi
Sorry you are feeling so unwell.
Have you had the thyroid checked? Your symptoms sound similar to those of an under active thyroid?? I know Hurdity mentioned this. Sometimes, the symptoms are very similar to menopause.
Xx

Hi Shopppingqueen,  thank you for your message.  Yes, I did have my thyroid tested on numerous occasions as there is a history of thyroid issues on my mothers side of the family.  My mother, my aunt and my uncle, all have thyroid issues, one being over-active, ione under- active and one para-thyroid  So, my gp has always tested that and I even insisted he do extra checks for the like so of hashimotos etc.  the only test that came back abnormal was my AMH test (ovarian reserve). I was told I was going into early menopause and if I wanted more children that I should start IVF straight away.  I have one child and I am not in a relation at present and I do not foresee myself wanting any more childrens so I was told i'd need HRT asap but then she said no to it as she wanted ehart tests and dexa scans done first and that was last year. my menopause/gynaecologist actually refused to see me when I returned for a scheduled appointment , after she told me at my previous appointment that I was to insist on seeing her when I came back.  I had travelled 1 hour ro get to that appointment as well. I felt badly let down by her and she's supposedly the best menopause doctor in the county.  Maybe I got her on an off day. All i know is i came away empty handed and was told she wouldn't see me until i had those tests done.  Oh my gosh, I'm ranting again!!!   Well, hopefully tomorrow i will get something that can help.
fingers crossed.