To be HUGELY angry at the NHS and wonder if anyone can diagnose this vaginal issue?

[FriendHelper]

One of my best friends has suffered as long as I've known her with a really uncomfortable gynae issue.

She waited for a long time for an appointment she had this week and was totally dismissed by the female (!) gynaecologist who told her there was nothing wrong with her and to try clitoral stimulation. Needless to say she's come away very upset.

Myself and other friends are really raging on her behalf now and I suggested I'd post her symptoms here in case any of you recognised the symptoms. Another friend advised she contacted PALS.

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This is what she's dealt with now for over a decade:

Feels very dry - gynae said it's not and looks fine. So maybe it isn't medically dry but it feels like sandpaper. DH also said it feels dry.

• inner labia often feels raw/burning with any kind of friction. Certain pants aggrevate. It goes red sometimes but not always.

• hurts during / after sex. Labia and the bottom part of vaginal opening which the gynaecologist said was thinning.

-after sex it hurts for ages, sometimes days/weeks and even months.

• has got better from using yes vaginal moisturizer. Before using YES it used to hurt even to walk.

-any lubes other than yea moisture really hurt.

• it burns in shower if the shampoo runs down there (only if it has been aggrevated)

• can't use soap ect in bath.

• no oral sex down there ever or it flipping kills

• started age 17ish but prior to that was so wet and moist I would have to take pants to change in the day.

• no smell

• no discharge

• periods ok/mostly on time

• masturbation hurts mostly

• vibrators don't help

• clit only stimulation doesnt help

• only time it felt ok was during both pregnancies

• swabs ect all come back clear, no STIs

Is she on hormonal birth control at all, OP?

Vaginal atrophy- early menopause? Would vagifem pessaries help?

www.med.unc.edu/obgyn/migs/our-services/vulvar-vestibulitis/

Could it be this?

Poor woman 🌷

Is she itching? I have lichen sclerosis and have a lot of the symptoms she's describing except mine is accompanied by an intense itch.

I was referred to a vulval dermatologist who listened to me and diagnosed me within a few minutes. I now have steroid cream and a vulval moisturizer and keep on top of my symptoms.

My advice would be push for vulval dermatology referral as they deal with skin rather than a gynaecologist.

Thanks ladies. I've sent her the link so will add any replies she sends me. Would love to get some answers! Just sounds SO miserable!!

You know a lot of details! Wow. Don’t think I’d share that much with my friends.

Lichen sclerosus?

Oh and my symptoms went away during pregnancy too. My condition is auto immune so it may be that hers is also as the immune system is surpressed during pregnancy

maybe you would if you were in agony???

Herpes ?

Haha we met when our first babies were newborns. We've seen the roughest of days that we've each been through!

If it gets her some help then the more info the better!

Also in this thread a poster says pregnancy helps in the case of vulvar vestibulitis www.mumsnet.com/talk/general_health/1661472-Vestibulodynia

Reply from my friend who's really grateful for replies already. Xxx

• - - -

Ok so to add.

• was on HRT, 4 pumps of estrogel and vaginally inserted progesterone for another issue but it didn't help with vaginal issue.

• tried estrogen pessary which maybe ever so slightly helped but really not by much if it did .

Has she had all swabs, and recently? I get these with thrush!

I can't imagine a group of friends raging about such personal details.

Feel quite sorry for you then.....

How old is she?

Has she had bloods to check her hormones?
Has she has swabs?
Checked/ treated for thrush?

She could have allergies or vaginal atrophy?
Unlikely to be menopausal if it's been ongoing for years and periods are ok.

She needs to go back to GP, be firm and demand further investigations.
In the meantime, no soap or perfumes down there. Just wash with water. Maybe no underwear at night?
Could try washing underwear in ecover or a gentle fabric detergent.

Essentially she needs to go bk to GP and start being a little more firm for further tests and express how much this is impacting quality of life, also the gynae DR sounds ridiculous

Hi there,
We have moved your thread as we don't believe that AIBU is the appropriate forum. We do hope your friend receives the help she needs.

Some of the symptoms do sound like oestrogen deficiency - she is young from your post but has anyone tried some oestrogen pessaries ?
alternatively maybe dermatology to exclude skin conditions.
does she have dryness else where - her mouth or anywhere which could be systemic cause eg sjogren syndrome

I came on to post vestibulitis. After every cream under the sun (steroid ones helped for a while but not for everyone) I found Oilatum Plus bath oil absolutely amazing. I wouldn't have thought something simple would help, but it did - very moisturising I suppose. I feel so sorry for your friend

I actually had these symptoms with thrush and fluconazole tablets (the ones you swallow) sorted it out, but even the thrush cream burned. I didn't notice any discharge either. I sat on it for months because the cream hadn't helped before I finally went to the GP in desperation and three fluconazole tablets on consecutive days got rid of it. That was about 10 or 15 years ago. Then last month exactly the same thing happened again with the bleeding and everything so I sorted it straight away with a single tablet because it hadn't got so out of control. Both times it was thrush but without the discharge.

My friend is post menopause and has been bleeding for the last 3 years. All that time she has had scans, x-rays, internals with little or no response after repeated GP and Consultant appointments. There have been months at a time she's had no response at all and had to keep chasing them up. At one point i even wondered if they were just waiting for her to die. It's still ongoing now and continues unresolved with the result that she's terrified she has cancer and doesn't understand why it's not being treated seriously. I can totally understand your frustration at the NHS with this. Yes it's under funded and poorly managed, but clearly people are being left behind when it's obvious to everyone else around them that they need urgent attention.

It's very difficult when she's been pinning hopes on a long awaited appointment and come away with no diagnosis but I'm assuming she has seen other gynaecologists in the past with this long term issue and not had any answers there either? So I think YABU to be HUGELY angry after this one appointment.
It sounds like a very unusual problem and unfortunately some medical problems are not easy to diagnose. It might be worth continuing to seek further opinions, maybe from a tertiary centre like Liverpool Women's Hospital, for example. I hope she gets an answer soon.

This was me. Even down to finding yes moisturizer helped.

I was told by NHS that my "sti screening" was clear. I wasn't informed of specifically what they tested for. i suffered for ten years. It would flare up and then go again throughout. I tried all yeast treatments and OTC BV treatments (did not try antibx). Drs very unhelpful. Just kept testing for Chlamydia or giving me more thrush meds.

Turns out the test I had did not test for trichomoniasis. This is what I had suffered from all that time. One course of antibx and I was cured.

Worth looking into for your friend.

Vestibulitis. It’s pretty grim but they can’t treat it. Typically at the 10 amd 2 o clock positions or 4 amd 8 depending on which way round you look at it