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[Kaydee91x]

Dear all,

My name is Katie, and I am a 33. I was diagnosed with premature ovarian failure/insufficiency at around 13/14 when I never naturally started my periods. At the time I felt a lot of "why me" and was advised to take the pill to fit in with my peers and it was discussed that HRT had lots of scary stigma regarding Breast Cancer etc (apologies if this is a trigger for anyone!) At the time, my mother was very against me going near HRT and it was also not very fitting for little 13 year old me to be taking it. I took the pill up until i was roughly 19, As a teen i was fed up with periods i felt i did not "need" as i was sexually active and the strength of pill i was on stopped working for me. I did however, start the pill again until i was in my early 20's. Once again i ditched it as i was fed up and never really got used to the bleeding it was so unnatural for me, I never could deal with it like all my friends. ( I know this all sounds pathetic, i was a typical hormone teen/young woman more obsessed with Men! 
Fast forward almost 8 years and just over 2 years ago i reached out to the GP fed up with my irrational hormones, constant hot flushes and depression I explained that i have had no hormone replacement for a significant number of years! After a lengthy conversation with the GP she prescribed me with a starter of Evrol 25 (to increase, I am now on 75) with 100 Progesterone at night (GP recently advised to double to two at night which has not helped).
Since i have been on the HRT, I have been experiencing Menopausal symptoms more than ever! (understandably) I have gained so much weight, poor diet has not helped, my sex drive has almost completely disappeared. And i'm generally just more not me than ever, I can deal with the other side effects, but the worst thing that's happened is the bleeding. I have never experience such heavy bleeding, before I would have normal to light 'periods' if i ever did bleed. But now, more recently I have been for almost 6 weeks straight having a constant heavy bleed. I was wondering if anyone has experienced bleeding on a continuous HRT before?  I have consulted the Gynaecologist and also my GP, I have had scans that show nothing and blood tests that are not out the ordinary. Another alarming symptom is severe heart palpitations, this seems to have started when the bleeding is happening and at its worse, the GP has told me that this is not linked to my medication nor is it related to the menopause.
I understand that this sounds like an issue i need to consult medical attention for but just for clarity I have reached out to the GP's many times and I have a Gynaecology appointment the start of July. I am just growing very concerned.

Thank you so much for reading x Newbie here, and a dyslexic one so apologies  x

[bombsh3ll]

I am so sorry this has happened to you.

POI should not be managed in primary care, you should be seen by a specialist menopause clinic who can work with you to tailor treatment to your needs in the most physiological way possible.

This typically involves higher doses of estrogen than for women with age appropriate menopause and ideally testosterone replacement as well.

You should also have a dexa scan.

I hope that the gynaecologist appointment you have coming up is with a menopause specialist but if not, PLEASE make sure you get a referral.

Untreated/improperly treated POI can have devastating consequences both short and long term, so it's really important to advocate for yourself to get the care you deserve.

[Kaydee91x]

Hi Bombsh3ll,

Thank you for reaching out, I have had a dexa scan, which revealed "Mild osteopenia" I have only received Gynae appointments when I have chased them, and as you said the GP's have no clue how to deal with me

I have never seen a menopause specialist and most of the time that i have had appointments, I do not feel that they understand my condition. I have thought about going private, but very unsure where to start!

[sheila99]

I would start with your gp and ask for a referral to a menopause clinic. Many gynaes are clueless about menopause and it's really important you get appropriate treatment. The wait is about a year in my area so if you can afford it it might be better to go private. I think the Daisy website is for pof so may have some useful information? If the scan shows everything to be normal the most effective option for problem bleeding is a mirena. If you've always used utrogestan continually I would try a couple of sequi cycles when this bleed has stopped. Utrogestan can have side effects and time off it will show you if this is the case for you (I turn into a zombie on it). Palpitations can be a symptom of both too much and too little oestrogen. Do you have other uncontrolled symptoms on the 75 dose? And how long have you been on it? You should be on testosterone anyway but lack of libido is a good indication you're deficient. It usually needs a specialist to prescribe it. Personal opinion but I think hrt is only part of any solution and you need a holistic approach which includes a good diet and exercise, particularly as have osteopenia. Tranexamic acid to stop this bleed but more importantly you need to see a specialist who can sort your hrt out for the future.

[bombsh3ll]

If paying privately is an option for you I would definitely suggest it if you don't get anywhere with your appointment in July.

33 year old women should not have osteopenia - you need those bones to carry you around for several more decades so the sooner you can get on appropriate treatment the better.

Whilst I have no personal experience or connection with any private specialist, I have heard very positive things about both Newson Health and also Dr Zoe Hodson in Manchester. I know both of these offer online consultations and also have experience with younger women.

If you are looking at a particular doctor or clinic, it would be a good idea to ask first if they specialise in POI as some will have more experience than others with this type of patient.

[Kaydee91x]

Thanks Both,

Very helpful, I was recommended the Daisy Forum when i first received my diagnoses. I have tried signing up, there is issues with being able to purchase the membership so that is unsuccessful at the moment. This is the first i am hearing regarding the testosterone, but makes perfect sense. I used to work in a dispensary and many a time i saw that on prescription from private specialists.

The main symptoms i stuffer with on the 75 is the bleeding, palpitations, insomnia (i have always struggled with sleep on and off), getting excessively hot (I am overweight - Currently on slimming world yet again) and Mood swings. I am on a very high dose of antidepressants with the view of being able to come off when i started HRT 2 years ago. And honestly, the only benefit i have had in the past 2 years is a lift of the brain fog!

Last Gynae appointment a Mirena was recommended, i will take that offer up! Is that something that can be fitted whilst bleeding?  I have been on the 75 since 09/02/23 (roughly, i just checked my NHS app that's when i think it was first issued to me, might have been slightly before that. And even then that was only issued when i reminded my DR about my Dexa scan results!!

Thank you for the names, i will do some research. Its sad that it is something that we have to go private for but with the crisis we are in i see no other option, and as you say i do really need answers and the correct treatment.

 

[SLUC]

Hello Kaydee,

 I am 45 now and had POI in my early 20’s so know how you feel 

I was referred to a Menopause Specialist at the John Radcliffe NHS in Oxford and started HRT in my late 20’s and have been on it ever since. Every GP, Private Doctor or any Specialist I have seen over the years have all told me that for someone with POI the benefits of taking HRT far out weigh the negatives and I should stay on it till around 52. I had some issues a couple of years ago with bleeding and needed to change my HRT unfortunately the wait to speak to a specialist in this area is over a year now on the NHS so I went private. I highly recommend to do this if you can. They fully understand the menopause and HRT better than anyone and will help you get the right balance/dose for you.

You will be ok and this will get sorted x