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

Oh that's interesting as I have an oestrogen deficiency as well and I usually use the oestrogen gels but haven't since my last pregnancy. I wonder if the two problems are stacking for me.

Thanks all.

Reply from my friend re Thrush/itching:

So I don't THINK it itches. But there has been times I have been treating for thrush but I was wondering recently its a symptom and possibly not actually thrush ?

Thanks MN. Apologies. I did AIBU for traffic but fully appreciate health is a better category.

Hopefully now it has some replies it'll keep getting seen.

lol @ the posters saying they can’t imagine divulging this much information to their friends. It’s just a body part and if we were all a bit more laid back and honest about ALL aspects of our health (where we are comfortable to do so), then perhaps there would be better understanding generally of “wimmens ishoos”

anyway OP I forgot to add in my reply that I got a lot of these kind of symptoms with thrush but also with what turned out to be a latex allergy. You’d be surprised what latex is in!!!

I had something similar and the moisturisers made it worse. Dr thought it might be thrush without symptoms but the creams also made it worse. Only thing that got rid of it was the BV treatment that you take over several days. Even though it didn’t smell like BV, I also took a daily probiotic tablet but no idea of that worked or not.

I am convinced my issues all started when I had mistakenly used baby oil internally and it was some sort of reaction.

I would go back to the GP or even better to the sexual health clinic if she is vaguely near one, and ask for a referral to the vulval dermatology clinic. In the meantime has she been given this leaflet on vulval skin conditions?

The only other thing I think it’s worth thinking about is an MI (Methylisothiazolinone) allergy which commonly causes vulval dermatitis. It’s in so many things, washing powder, shampoo, lube. If you search there are threads on mumsnet about it.

Place marking for useful
Info.

I think it’s worth her looking into Lichen scerlosus - I was diagnosed with this and was very sore and the symptoms sound similar to what your friend is going through. Really hope she gets it sorted out. Steroid cream worked for me. www.nhs.uk/conditions/lichen-sclerosus/

Why doesn’t she go to a gum clinic they are free in uk and are for sexual health

Vestibulodynia/ vulvar vestibulitis. She needs to see if she can get an appointment with Dr Gillian Pritchard (NHS). Can't help with treatment suggestions as mine is only noticeable when attempting penetration (for which I was prescribed numbing cream, but I didn't rate it).

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

Hmm .. 'I would have to' ... I thought this was your friend?

Sounds exactly like Lichen sclerosus to me. But I'm no doctor!

I would, with a couple of my closest friends.

Just go to a sexual health clinic.

This is far too much TMI even for the closest of friends.

Something is off here.

Sjorgens syndrome….?

I have this and have horrendous issues like your friend. I have HRT, Ovestin cream (which can be applied externally as well as internally which means it’s better than Vagifem which is just a pessary). I use Replens on the days in between using the Ovestin. If you have sjorgens you won’t typically produce the white discharge associated with thrush and you can develop it to a chronic extent so I take a Fluconazole 150mg capsule once a month (I also have horrendous oral and oesophageal thrush so this helps with that too) and I take a Biokault probiotic capsule everyday.

sjorgens often overlaps with lupus, I have that too. I have lichen planus in my mouth and all sorts of other lovely associated stuff.

Having much less sex also helps. Much, much less! Like hardly ever.

You haven't mentioned if she's on the pill or the coil.

Not as severe as your friend but many of the symtoms. Also went away in pregnancy... because that was the first time I hadn't been on tbe pill in 10 years (I got pregnant within a month of stopping the pill).

I was then off the pill for 5 years. Had a mirena coil inserted and its completely ruined by vagina.

Monthly bouts of thrush, dryness, sex is painful, etc. Since I'd been on the pill since I started having sex I had just assumed it was me... now I am absolutely sure its something to do with hormonal contraception.

Having the mirena swapped for a copper coil next month and I can't bloody wait (currently enduring yet another dose of thrush and am miserable).

Genital psoriasis.

Vulvodinia.
it’s extremely painful and hard to treat :(:(

@heartchakra agreed.

I had some similar problems. Stopping pill definitely helped. Using tea tree in bath rather than thrush creams helped. Mine turned out not to be vulvodynia as I was told and was hypertonic pelvic floor muscles sorted out by a womens pelvic floor physio. Just some suggestions

Lichen sclerosis. Majority of GP's will miss this as they rarely see it in clinic.

Get a second opinion from a doctor at the GUM clinic. They cover everything not just sexual issues. They are very experienced.

Aak her to push for a consultant in vulval health- only they can diagnose her

I was diagnosed with lichen sclerosis and was prescribed a steroid. Finally someone who listened to what I was going through!

I also think the contraceptive pill also contributed to the discomfort.

Hope she gets seen soon x

It sounds to me like it could potentially be autoimmune related, does she have any other conditions or reoccurring long term issues?
Autoimmune conditions usually go into remission during pregnancy because the immune system is suppressed.

I’ve had symptoms similar to this recently and my gp diagnosed thrush, and has prescribed canestan pessary x2 4 days apart as it’s too severe for one.
I hope she gets it sorted soon, she must be feeling pretty miserable!

Classic MN to avoid the point and accuse a poster of lying. Such a weird place sometimes.

I copy and pasted what she WhatsApped me. Hence the "I"s

Here's the thing.

I named changed for this. (Obviously) So what actual difference would it make if it were me or my friend who was suffering?!

Either way it's anonymous.

Also if it were a case of being non-anonymous I'd sooner out myself as having vag problems than out my friend.

She doesn't use MN. I do. I offered to ask on here and she said yes. As if I'm struggling with something I often ask on here if I would like feedback from a wider audience.

In any case - apart from the classic conspiracy theorists - a huge thanks to posters who have genuinely helped. Myself and my friend are very grateful and I'm glad to have friends that can be so open with me and me with them.

You should try it some time.