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[panda123]

Hi all you lovely ladies
I haven't posted on here since mid last year but I have been reading avidly how you are all getting on.  I am still battling the severe symptoms of progesterone intolerance which have dogged me for 30 years (I m now 52 and still having regular periods)in varying degrees but which are now unbearable and pretty much constant due to fluctuating peri menopausal hormones.I don't know how I ve actually made it this far and am still standing albeit very wobbly.

However I eventually made the pilgrimage to see the Prof in November and I must say I was very nervous that he would say I was a lost cause and beyond help. However he was truly lovely - very matter of fact and sympathetic and made me feel less of a freak than I have for years! He was very thorough with going through my entire history and it was wonderful to speak to someone who actually UNDERSTOOD what I was saying and didn't try to belittle the effects of PMS/hormone imbalance/progesterone intolerance.

The upshot was that he recommended a hysterectomy and oopherectomy be performed as soon as possible. That was when my next battle started - getting an NHS gynaecologist to agree to do it.  This actually turned out to be surprisingly straight forward with the might of a strong recommendation from the Prof, and the NHS gynaecologist gave me a date in Jan for the surgery. HOWEVER it was then rejected by the Men In Suits at the NHS trust as being unnecessary and not worth spending NHS money on. So my battle is continuing.  I am on unopposed oestrogel at the moment and have been since November but my progesterone is still breaking through and plunging me in to suicidal hell on a regular basis.  I had to have a uterine biopsy last week due to extremely long, heavy and painful periods, presumably due to the unopposed oestrogen- waiting for the results. If I had the money to go private I would but unfortunately that is not an option.
There are MANY days when I feel I cannot go on another minute, that my life has been a constant struggle for so very long, battling monsters and demons which all the psych drugs had little effect on.  I have been made to believe there was something abnormal in my brain and put in a box labelled "mentally unstable" for so long it has been incredibly hard for me to accept that it has all been down to my own hormones and to believe I can get better without strong mind altering drugs.
I am going to go on fighting for a hysterectomy- I would love to think there is a possibility that the last trimester of my life could be free of all the hell that unbalanced and intolerable hormones can bring. Maybe I can even come off the AD s which I have been on for over 30 years!
Sorry - this has turned into a bit of a rant!  Please all keep your fingers crossed for me that I get my life-saving (that's what it feels like) surgery passed.
Panda xxx

[Hurdity]

Hi panda123

Pleased to hear you got on well with Prof Studd but sorry to hear you are unable to access the treatment that will help you - however radical it is.

If the effect of your hormones and their cycling has had a consistently negative effect on your well being - to the extent that you have as you say battled monsters and demons and have taken various psychiatric (?) drugs - then how can one part of the NHS deny a treatment that is necessary - or at least very strongly advised for your mental and emotional state?

I presume they are saying that once you are post-menopause you will no longer have fluctuating hormones and will therefore be cured? I am not sure about the protocols of womb/ovary removal in cases like yours but there are women on here who have the Zoladex (?) injection or similar, to shut down the ovaries - and then oestrogen is added back with limited progesterone - prior to such an operation. Is this something that Studd suggested or you have considered?

I do hope that you are eventually able to have the operation anyway if this is what you have been advised is necessary and you have decided to go ahead. I find it incredible that the NHS gynae approved it and someone else in NHS then refused it. Surely the specialists are the ones whose opinion/recommendations count?

Hurdity x

[panda123]

Hi Hurdity

Thank you for your response.

Prof Studd never mentioned trying the Zolodex but I have done research on it myself and decided not to go down that route as the response seems to be very mixed and I have reached the very end of my tether with trying more drug therapies.

When I saw the NHS gynaecologist he made it very clear to me that although he was satisfied that a hysterectomy and oopherectomy was the correct treatment for me the final decision lay with the money men on the Board.  He was incredibly apologetic when he informed me it had not been passed and said he would appeal on my behalf.  I think the NHS is under huge strain and it seems that the diagnoses/opinions/recommendations by the front line consultants are no longer enough to ensure correct and timely treatment for a patient -  it all comes down to money and huge patient numbers. 

Prof Studd said that with severe long term progesterone intolerance once the ovaries plus uterus is removed and only add back oestrogen is introduced then I should never experience the totally debilitating symptoms again.  I have researched extensively and been in contact with several other woman who have had the surgery and they all say their lives have improved immeasurably.  I realise this is a big decision and have taken everything into consideration before deciding on this drastic action.  I am a single Mum (husband driven away by PMS) and my 3 children have supported me emotionally for far too long - I need to do this for them too so they can have a Mum who is able to function for more than 4-5 days a month.

I m determined to keep fighting for this chance to get well although some days the battle seems too hard when I m in the midst of a progesterone surge.

I would be so grateful to hear from anyone else who has had the same surgery for severe intolerance to their own progesterone.

Panda xx

[Taz2]

Hi panda123 - I'm so sorry to hear that you haven't been given funding for the op you so badly need but your strength of character and determination shines through in your post and I hope that the decision will soon be overturned.

If you type PMDD into the search box it will bring up any other posts on this and you may find a member who has had the surgery?

Taz x

[CLKD]

Also, it's getting to the end of the Financial Year.  You could also try a different Health Authority to see if they are willing to pay, this is something that the Consultant ought to be able to do on your behalf - because they mix with others at Conferences etc., your GP should also be aware of what is available in other Authorities.

Maybe get your GP to refer you to a Psychiatrist who may have more clout?  No one should be forced to feel as you have done, after all it must be cheaper to do surgery as recommended than have a patient returning to the GP Surgery over and over!

 

[panda123]

Thanks Taz for your lovely comment and I will definitely do a search.

Thanks for the info CLKD - not too sure how long the waiting list is to get an appointment with a Psychiatrist but I imagine it will be similar to a Gynaecologist which is about 12-18 weeks.  Just seems that I m always waiting weeks or months to see someone then think I m getting help at last only for my hopes to be dashed and have to start the waiting process again for another appointment!  .  Oh well maybe I ll win the lottery one day and be able to pay to get seen quickly.