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Author Topic: Ideas anyone?!  (Read 3782 times)

lisa789

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Ideas anyone?!
« on: March 22, 2016, 01:50:57 PM »

Been having problems for 3 years now with longer cycles, murderous PMS symptoms, anxiety and feeling rotten in general.

I saw a gynaecologist in October of last year who gave me zoladex to stop my periods. This made me very ill and I have since learnt they should have given me HRT alongside the zoladex to take away the menopause symptoms. I never went back for a second implant.

In February i saw a different doctor and he said I had severe PMS and prescribed Evorel 50 & norerhisterone for 12 days at 10mg. I couldn't tolerate the norethisterone and had to stop after 2 days I felt that bad.

I went to see a gynaecologist privately 2 weeks ago and he was clueless. He'd never heard of Utrogestan. After flicking through a book he eventually prescribed it and said if that didn't work I should consider a full hysterectomy and ovary removal. I'm also waiting for a date for a pelvic ultrasound from him.

Went to see a consultant yesterday who was listed as specialising in PMS & menopause etc. She said looking at my previous hormone blood tests she thinks I've had premature ovarian failure. I'm currently 41 but started having issues at 37/38. My periods were hit and miss up until last year and could be anything from 20-70 day cycles. The last year I've been getting monthly bleeds for two or three days but it's very light and old brown smelly blood.

To say I'm confused doesn't cover it. I don't understand how I can still have bleeds if my ovaries have failed. She told me to stop HRT immediately so she can do blood tests in 4 weeks time. I've emailed her as I've read if you're still having bleeds blood should be taken day 2-5 of cycle. After reading about premature ovarian failure I've lost all confidence in her opinion as I don't think I have that.

I took my Evorel patch off yesterday.

I rang the GP surgery this morning and asked them to give Me details of my FSH counts they have on file
April 2013  - 21.4 which indicates menstrating
February 2014  - 45.8 indicates after menopause
April 2014 -  6.5 indicates menstrating
August 2015  - 73.8  indicates after menopause
October 2015 -  5.9 indicates menstrating

Anyone have any ideas what is going on PLEASE?!
Even though I was only on the Evorel 50 for a month it significantly reduced my anxiety and frequency of panic attacks, I just needed to find a suitable progesterone.

I think it's peri menopause but 4 different doctors have all said different things. I just want this misery to end. 

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MIS71MUM

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Re: Ideas anyone?!
« Reply #1 on: March 22, 2016, 04:41:14 PM »

No ideas sorry but didn't want to read and run.

My GP told me that I had premature ovarian failure but I took it to be peri. Basically my GP said things were starting to decline! and have started to go fastly downhill ever since!

Good luck
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lisa789

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Re: Ideas anyone?!
« Reply #2 on: March 22, 2016, 04:56:39 PM »

Thank you for your reply. I think it's peri too.

Will have all the test then hopefully find a suitable HRT. Are you on HRT, if so which one if you don't mind me asking?
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MIS71MUM

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Re: Ideas anyone?!
« Reply #3 on: March 22, 2016, 05:09:06 PM »

Hi - no not at all.

I'm 12 days into oestrogel...think i got the doseage a bit wrong to start off with as wasn't sure what a full plunge was, then I changed it to 2 pea sized amounts as felt a bit jittery. I know it's early days and as yet have no progesterone because my nurse wouldn't prescribe it as she didn't know enough about it.

Without the gel, my days were really hit and miss and had absolutely no energy at all so I know I need it.  Having a bad day today though, fed up of feeling so miserable all the time!

Tried Femostan 1/10 before and I was okay on that before.  I asked for the gel this time around so that I can increase/decrease the dose as you can't really do this on the tablets.
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CLKD

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Re: Ideas anyone?!
« Reply #4 on: March 22, 2016, 05:14:45 PM »

Have a look at the Daisy web-site, Link above.  I thought that premature ovarian failure was in girls aged 20-ish  :-\ the web-site may well be clearer.

How is your diet?  May be try eating every 3 hours, 24/7 because that can ease PMT symptoms.  That's 24/7, very important not to miss in order to keep sugar levels even.  Gentle exercise when possible.
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Hurdity

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Re: Ideas anyone?!
« Reply #5 on: March 22, 2016, 05:56:03 PM »

Hi lisa789

So sorry to hear not only about your gynae problems but also that you haven't had a proper consistent diagnosis from the medical profession.

There is clear information about premature menopause/premature ovarian failure - on this website.

Go to the top tab menopause and the sub-tab is premature menopause, and there is a whole list of pages about it - including causes, investigations and treatments. Clearly you were under 40 when you first started having problems. The new NICE Guidelines on menopause also set out the course of events and tests which should take place and they are here:
https://www.nice.org.uk/guidance/ng23/chapter/Recommendations#diagnosing-and-managing-premature-ovarian-insufficiency

I'll reproduce it for you:

Diagnosing premature ovarian insufficiency

1.6.1 Take into account the woman's clinical history (for example, previous medical or surgical treatment) and family history when diagnosing premature ovarian insufficiency.

1.6.2 Diagnose premature ovarian insufficiency in women aged under 40 years based on:

menopausal symptoms, including no or infrequent periods (taking into account whether the woman has a uterus) and

elevated FSH levels on 2 blood samples taken 4–6 weeks apart.

1.6.3 Do not diagnose premature ovarian insufficiency on the basis of a single blood test.

1.6.4 Do not routinely use anti-Müllerian hormone testing to diagnose premature ovarian insufficiency.

1.6.5 If there is doubt about the diagnosis of premature ovarian insufficiency, refer the woman to a specialist with expertise in menopause or reproductive medicine.

Managing premature ovarian insufficiency

1.6.6 Offer sex steroid replacement with a choice of HRT or a combined hormonal contraceptive to women with premature ovarian insufficiency, unless contraindicated (for example, in women with hormone-sensitive cancer).

1.6.7 Explain to women with premature ovarian insufficiency:

the importance of starting hormonal treatment either with HRT or a combined hormonal contraceptive and continuing treatment until at least the age of natural menopause (unless contraindicated)

that the baseline population risk of diseases such as breast cancer and cardiovascular disease increases with age and is very low in women aged under 40

that HRT may have a beneficial effect on blood pressure when compared with a combined oral contraceptive

that both HRT and combined oral contraceptives offer bone protection

that HRT is not a contraceptive.

1.6.8 Give women with premature ovarian insufficiency and contraindications to hormonal treatments advice, including on bone and cardiovascular health, and symptom management.

1.6.9 Consider referring women with premature ovarian insufficiency to healthcare professionals who have the relevant experience to help them manage all aspects of physical and psychosocial health related to their condition.



I'm not sure what the position is if FSH varies to that extent - but I presume that the fact that it is raised several times means that the ovaries are failing, but the fact that sometimes the reading is normal means that they are working intermittently? There is greater variablity in hormonal profile for women with POF than normal age menopause.

I think the gynae conusultant means you are heading for POF since you wouldn't have periods if your ovaries had failed although according to the STRAW model of reproductive ageing - some women with crietria of POF (4 months without periods and 2 blood samples with elevated FSH a month apart) - can have spontaneous resumption of periods.
http://www.imsociety.org/downloads/email_downloads/2012_02_16_1773491/straw10.pdf ( Page 6 - Inclusiveness of STRAW10 criteria).

I agree how can you take blood samples on days 2-5 of cycle if you are not bleeding? I think possibly that day criteria for taking blood sample does not apply to POF otherwise you could be waiting for ages!

The most important thing is that you do need to be on HRT asap - notwithstanding the consultant saying wait for 4 weeks. At your age you might find that the contraceptive pill stabilises your hormones levels while at the same time giving you the oestrogen you need to your age. There is a fairly new one called Qlaira which contains estradiol - the same oestrogen as in our bodies - and only has 2 or 3 tablet free days - so ideal to prevent pms. The only thing is that you would need to be able to tolerate the progestogen in that one.

This is a bit of a ramble but hope it contains some helpful information. You definitely need to be under a specialist, and one who is au fait with early/prem menopause as well as HRT!

Good luck and let us know how things progress.

Hurdity x



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lisa789

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Re: Ideas anyone?!
« Reply #6 on: March 23, 2016, 01:10:42 PM »

Thanks for your replies guys, much appreciated xx

CLKD I can't eat 4 hours before I lay down due to volume reflux.

Hurdity thank you so much for the detailed response. I like the sound of that pill that you mentioned, I'll definitely ask about that when I go back. X
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Keepgoing

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Re: Ideas anyone?!
« Reply #7 on: March 23, 2016, 01:28:26 PM »

Hi Lisa were you not trying the estrogel and utro??  Did you not get on with it?  Hope you get sorted soon xx
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lisa789

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Re: Ideas anyone?!
« Reply #8 on: March 23, 2016, 01:38:48 PM »

Hi Keepgoing how are you?

I was on the Evorel 50 patch and got the Utrogestan but on Monday I went to see a specialist for a second opinion. I was due to start the Utrogestan tomorrow but she told me to stop the HRT for 4 weeks so that she could trst my hormone levels.

I go back mid April for bloods and a smear, if I don't have my nhs ultrasound appointment date through by then think I'll get that dove private too while I'm there.
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Keepgoing

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Re: Ideas anyone?!
« Reply #9 on: March 23, 2016, 03:01:00 PM »

Hi Lisa
I'm doing a lot better thanks for asking.  Hope you get this all sorted and get put on a regime that suits you as it does make a big difference, hang in there it does get better.  I was where you are and thought I was never gonna find the right one but think I have now.  I know it's so difficult just now when feeling the way you do. Big hugs xx
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Cassie

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Re: Ideas anyone?!
« Reply #10 on: March 23, 2016, 03:12:21 PM »

I started off at 38 with early meno taking the oral pill until 41 then went onto the gel and utrogestan have never looked back, I can highly recommend the combo.
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Lizab

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Re: Ideas anyone?!
« Reply #11 on: March 23, 2016, 03:32:23 PM »

I don't have anything to add at the moment beyond what Hurdity covered. I just wanted to say hello and that at 39 and a few years into this I can relate. The POF is confusing because it's slightly different than a typical age menopause. They have to test more to rule out other problems, where at a typical age I think they can make a solid assumption based on symptoms. But waiting for test results and doing everything step-by-step seems to drag out the time it takes to finally get some relief.

As for your gp saying POF but you thinking peri, I had a similar progression. My gyne initially told me peri at age 36 (I think), which was kind of correct, only my peri progressed more rapidly than anyone expected so now they're calling it early menopause. At that first mention of peri she told me I'd be dealing with it for probably 10 years. I'm now on hrt, so I don't know how long I'll be dealing with it before I'm settled and done, but before hrt I could count on my fingers the number of natural periods I've had in the past two years.

I hope you get relief quickly!
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