Vulvodynia / Vaginal issues

[Sunflower960]

Hi.
I am 33, I have had vaginal issues for around 3 years and few days ago have been told I have vuvlodynia (diagnosed without face to face appointment by a consultant via referral pathway).
Anyway, they have advised I start amitriptyline and at this point I will try anything!

My issue is, I'm not sure my symptoms are classic, of what is usually described so was wondering if anyone else had the same issues as me and was also diagnosed with this too , and if this medication worked.

My main symptoms are intense internal itching, redness (external) and slight internal swelling of vaginal walls, sex can sometimes be painful.
I have had test after test, seen gynaecologist, including paying private for them, multiple GPs, prescribed multiple medications 'to try'... the list goes on. Latest one iv been given is estradiol but I have used it for 5 nights and my symptoms are now 10 times worse.

Anyone any insights or personal experiences?
TYI

Yes vulvodynia is a description of symptoms it is not a particularly helpful diagnosis. Amitriptyline did nothing to help me. I have aerobic vaginitis which isn't well know about by the medical establishment. If you can afford a vaginal swab from digital microbiology I would do this. I have also had to use a oestrogen/testosterone cream which has helped.

Amitryp worth a shot but didn’t do anything for me. I had ‘vulvodynia brought on by recurrent thrush’ (was exactly like what you’re describing) for 7 years straight (on my wedding day etc!) and nothing helped until I had babies I’m afraid! Pretty drastic!

Thank you.
I was also diagnosed with aerobic vaginitis about 1.5 years in, was prescribed clindamycin which in honestly actually helped me for about 4 weeks. I was over the moon. Then.. symptoms came back and not gone away since. I have asked them for more clindamycin and hasn't helped since.
I have tried estrogen, both cream and pessary, they make my symptoms worse, makes me very swollen and unable to sleep at night.

I feel like this whole thing is a battle and a guessing game for most health professionals, it's depressing.

You could try fluomizin that is what got rid of mine. Then had to repopulate with vaginal probiotics.

Wow.. 7 years 😭 that is soo bad. It's so frustrating. Good to know your symptoms were the same though with same diagnoses. I will try the amitriptyline and see how I get on but you do start to lose hope after this long.

Hi @Sunflower960 - it's disgraceful that they diagnosed you without looking at the region in question. It sounds as if you have an ongoing infection. It may have reoccurred after you stopped the clindamycin. I second the suggestion to try fluomizin but make sure you take women's probiotics orally at the same time.

In case it helps I'll link to my story. See post below.

Xxxx

https://www.mumsnet.com/talk/womenshealth/5190130-beating-a-chronic-uti-success-stories

If you can it would be better to find a doctor to treat you but nobody seems to recognise aerobic vaginitis which is awful.

Xxxxx