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[Jemima T]

Hi, sorry if this is a bit of a saga but I'm slowly losing the will to live.. started peeing squinty about 2 1/2 years ago.. went to doc who referred me to gynae.. they said VA gave me 6 week supply of vagifem and sent me to fanny Physio for 6 months.. no change.. back to gynae (different one) another 6 weeks vagifem.. back to fanny Physio for 6 months..meanwhile the flushes and night sweats started (oh joy of joys) and I'm now constantly bleeding so was sent for hysteroscopy.. all well but continue to bleed... then the flooding starts back to gynae who suggested the coil.. wasn't convinced.. tried cerrazette.. didn't work.. then in November 2015 I felt like I had a uti.. went to doc they said no uti.. over a period of a month I took in 4 urine samples.. all negative. They gave me all sorts for cystitis, thrush and more vagifem.. on repeat.. then elleste duet, then femseven patches..nothing worked.. I finally, after a complete meltdown got a referral to a urogynae in august 2016 who said yes was VA and advised to stop vagifem and start using Ovestin cream... inside and out.. also advised than none of my urine samples had been sent away so she suspected I had a underlying chronic uti.. prescribed me 6 weeks antibiotics and to up my patches to 100.. went back to doc after antibiotics finished.. as still no difference ... to be told urogynae wanted me on another 6 weeks antibioticss and amytriptlyne and the coil.  so it's now Jan 2017 the 4 year bleeding has stopped.. occasional spotting but much better... my poor wee fanny is still sore.. it's not as bad as it was but still there.. I have been following u all for a while.. tried all your suggestions.. but I'm still sore.. please tell me it'll get better and that I'm not going to feel like this from now on.. sorry if it's a bit higgledy piggledy. I look forward to hearing from u all x

[CLKD]

If there is no evidence of urinary infection, which can only be found in a Lab., then ABs shouldn't be used.  You require continual treatment for vaginal atrophy ...... I can't believe that GPs are still so ignorant of what a lady requires regarding this condition 

Go back to see the Practice Nurse and discuss HRT in general and ask for treatment for atrophy.  I have had success with Ovestin1mg and other ladies use Vagifem which eases symptoms, however, the latter was reduced from 25mg to 10 so some find they require use every night.  The idea is that the products are applied every night for 2 weeks then every 4/5 or 6/7 night but that can vary dependent on personal requirement.

What on earth is 'fanny physio.' and do you practice ;-). 

[Jemima T]

Haha sorry CLKD, it's Physio therapy for ur fanny.. pelvic floor exercises etc.. I am currently on ovestin cream and femeseven 100 patches.. have an appointment with practise nurse on Friday.

[Annie0710]

Hi ya

I had physio down there before my hysterectomy in my 20s .  They attached electrical pads to various sites and zapped the muscles x

[CLKD]

Some ladies find that keeping a mood/food/symptom diary useful to chart symptoms etc..

How often are you applying the Ovestin ?  If I am in discomfort then I use it 4 5 nights on the 'run' , some ladies find that adding Sylk applied to the outer lips and perineum area eases symptoms .  It really is Trial and Error!

[Jemima T]

Hi, I was advised to use a kegel 8 machine to help strengthen my vaginal walls as well as day to day pelvic exercises. I saw the Physio once a month for check ups.

[Jemima T]

I use the ovestin every second night.. I also use coconut oil and have tried sylk but it doesn't help.

[Hurdity]

Hi Jemima T

 

Sorry to hear about your ongoing problems. Do read the "Burning Club" thread started by Dancinggirl - in Private lives - if you haven't already done so (very long!) - but sounds like you have tried the suggestions? Maryjane also has problems with severe VA and takes systemic HRT as well as local and moisturisers - so check out her posts too.

As a matter of interest what progestogen do you use as part of your HRT and have you reached menopause - or perhaps you don't know as you've been on HRT for some time? You also haven't said how old you are?

Hopefully your flushes and sweats at least are well controlled by the oestrogen patches?

You will find plenty of help and support here

Hurdity x

[Maryjane]

I have had lots of fanny physio over the last four years also.

I hope you are being taught how to relax the pelvic floor also as it is not all about tightening.

It is most definitely possible to have a UTI infection even if it comes back negative , a bio-film infection.

The NHS culturing is to quick and on cheap agar plates set up on a criteria in the 1950s which has not changed and was not done in a very scientific way, there are a group of very dedicated ladies/men/specialists trying to get all this changed.

However low dose prophalatic antibiotics are not the answer either as this makes the issues of antibiotic resistance even worse , so the best thing to do is use oestrogen to help keep the area as healthy as possible , also gave you seen a vulva dermatologist if you are still sore ? just to rule out anything else/also ?

[Jemima T]

hi all, thanks for all your replies. I'm 49,  been told peri but never had any blood tests etc. I have the mirena coil as my progestogen and femseven 100 patches. patches since aug/sept. coil since october.  Flushes and sweats very occasionally but much reduced. was handling the bleeding, flushing and sweating but not handling the VA as now been sore for over a year ive spent a lot of time stalking the "burning club" lol and have tried all suggestions. i do appreciate all the support.. i feel very alone sometimes and its lovely to know im not.

[CLKD]

   Maryjane - that's cleared a lot up for me!

You are not alone any more Jemima T ....... keep reading, keep asking