Unbearable itch and soreness below

[Oomph]

Hello all, I'm hoping someone with a similar experience can help me. Forgive the long story, but I think it's probably good to have a chronology!

• I started with what i thought was a UTI 2 months ago: urgency to pee, itchyness, burning sensation after peeing. I was given ABs (nitrofurantoin) for 3 days which GP prescribed without taking a look or a sample, over the phone.
• After this 1st course, symptoms did not go away so I returned to GP who this time took a sample and gave me a second course of antibiotics. Still no fever, just general itch, urgency, feeling in my urethra.
• Sample came negative for infection from lab
• I started to feel increasingly itchy and was told it was probably thrush (yeast infection) due to two courses of ABs. Took Canesten but itch remained. This has been going on for 2 months now
• I have red, raised patches of rough skin and what looks like little tiny bumps in my inner labia, and the itch is un-bear-able.
• The GP gave me oestrogen cream as she thought this might be vaginal atrophy due to perimenopause. This seems to have made things MUCH WORSE after a few days.

Some googling is throwing out lovely stuff such as Lichen Sclerosus and Lichen Planus. Has anyone had similar symptoms and could you let me know how you've coped with it? I'd be really grateful, as it's driving me nuts and I don't have another appointment with the GP for a week. And then I'll probably need to be referred to a dermatologist, so another wait!

Thank you!

bless you for thinking I’m that organised. I just buy whatever’s in the supermarket or boots tbh. I used to take EPO, but I think the starflower is a bit stronger?
tbh I should prob see GP, but don’t really have time.

I had an itch for over two years, finally got the courage to go to sti clinic. Straight away they said it looked like LS and sent me to GP.
GP prescribed low strength hydrocortisone cream which you can buy over the counter. This didn't work and I was referred to dermatology who have prescribed dermovate which has helped massively.

My only regret is putting up with it for so long.

There is a fab LS group on Facebook which might help you.

Sounds like LS, I was diagnosed back in 2015 in my early 30s via a biopsy .

I scared myself with google but luckily so far it hasn't caused me much problems at all , In fact for long periods I feel it's been in remission .

I try and use steroid cream every month but sometimes I forget . Now I'm 40 I need to be more on top of it.

Sexual health clinics are far better at this stuff than a GP (the old clap clinics have evolved a great deal!)

I am so sorry you are going through this, @longtompot . It really is debilitating, isn't it? And not something that you can just blurt out about in frustration.

I applied a mild corticosteroid cream last night, and it has been MUCH better. I've had a solid night sleep which was much needed. Unlike your itch, mine is an area of tiny bumps in the inner labia, close to the vagina and clitoris, and it sometimes seems to affect the urethra.

At any rate, like you, I'm waiting to be seen to determine whether this is more menopause perks, dermatitis, or something more specific such as a lichen of one type or another.

Bon courage to all fellow sufferers, this is so shit!

Agreed, they are great. My local one is very busy (zone 2 London) and it is walk in, so it inevitably entails a long wait. I can't do it, as I work full time and it'd require me to take time off. Still, this remains an option!

What coal tar did you use? I had a look last night but there are quite a few available.

@Oomph thank you. As awful as it is, it's nice not to be alone in this. The steroid cream and ointment did help for a day or so but then it flared up again. I was very cautious about using it as it thins the skin and can cause all sort of other issues. I have had eczema all my life, mainly on my hands, and have used Betnovate ointment for a long time, though very sparingly. I am sure the skin on my hands is thinner than it should be.
Anyhoo, if I find out what is causing this after my referral then I will let you know. I should hear by the 18th Dec, but we shall see.

@longtompot I honestly couldn't tell you - I did have a Google last night and couldn't find it sadly - I do remember it was an Australian brand.

I had little bumps I could feel which I wrongly thought were warts. I even bought treatment for warts off the Internet!!!

The STI clinic said they were lesions where I had scratched so much :(
No wonder the wart liquid stung like hell.

Meant to also say the Facebook group speaks highly of epaderm cream you can buy in boots.

Oomph have you been back to the GP?

I am having a similar problem. I am also on HRT patches and vagifem but have symptoms as you describe. I am trying to get an appointment with the Sexual Health clinic as recommended on here.

Hello all, I thought I'd come to update you on the latest, as I know this is an issue for a few of us.

I went to see the GP, who thought I had vaginal atrophy due to menopause (my vagina works, but never mind). She therefore gave me an oestrogen cream to be applied to the vulva. Which I dutifully did. This resulted in my genitals becoming so red and inflamed that I resembled one of those chimpanzees in the jungle, and having to work from home in a robe with no knickers. Humiliating, painful and not fun. And clearly the wrong treatment.

I got in touch with the surgery and was told there was absolutely no appointments available unless I went to see a male paramedic. Not great.

So I got in touch with a dermatologist friend, who recommended I continue applying the mild cortisone cream twice daily. This was enormously helpful, and I was able to wear knickers again, and work at an office like a normal person. But the itch was real - and persistent.

Cue return to the GP a week later, who heard my tale of woe and sent me to a specialist. To my horror, the referal form (which I saw in my NHS app) said 'suspected cancer referral form' which absolutely freaked me out. Turns out that this is just how the process is called. So not at all unnerving for patients.

The gynaecologist who saw me was excellent. She discarded both lichen sclerosus and planus, and she said it looked like something potentially allergic. While she made these sage remarks, my legs where in stirrups and my vulva on a monitor screen to the side, in it's full Technicolor glory. There is a first for everything, I guess, but at that point I was past caring.

She commended my dermatologist friend for her choice of cortisone treatment suggestion and asked me to keep at it for a month, then reduce the dose gradually. Oh, and I also had developed a yeast infection as a result of the previous UTI treatments, which I cured with a pessary, and was fun to see on screen.

As many of you have suggested, she said I should moisturise with Epaderm or similar EVERY DAY and avoid soaps, harsh detergents and other chemicals. I now use soap nuts for an underwear wash every week, and as a previous poster suggested up-thread, I've embraced the hippie detergents with abandon.

So, since then I am better, but my inner labia are still irritated. The itchiness is mostly gone, except some soreness close to the clitoris and urethra (what is that about??) and I'll start reducing the frequency of the cortisone cream. So I am not back to normal, but better.

There you go. I would love for this to go completely and feel normal again, but at least it's bearable now. Also, I'd like to understand the cause!

My heart goes out to any of you having similar issues. Please feel free to share, it's very useful to hear your experiences.

Glad you've improved OP - an itchy fanny is maddening and embarrassing.

Epimax is my friend, but the guttate psoriasis seems to have cleared up. I have also worked out that I have a mild allergy (nethers and tear ducts only...) to either my shampoo or my conditioner. I'm not changing the shampoo etc as the current regime is great for my (very difficult) hair, so I'm just trying to keep it well away from the bits of me that don't like it. Is there anything that you might be allergic to?

When I was prescribed steroid cream (along with the epimax) I did ask about skin thinning (as I have some very aged skin where I used ferocious quantities of steroid cream (Betnovate) in my late teens and 20s when being driven bonkers by eczema) and was told that short sharp use is better than using it over long periods of time.

What cortisone cream do you use @Oomph

I have LS

If you have read this thread and think just trying cortisone or epaderm is enough, please, please go to the Dr. LS needs the stronger steroid ointments not just because they reduce inflammation and itching, but because they make vulval cancer less likely, it's why even when we have no symptoms we should continue with a maintenance dose
We are also seen annually to check for cancer (as well as active LS)

I saw drs and pharmacists repeatedly who thought it was thrush, tested for BV until eventually a GP thought it might be LS. According to gynae my symptoms were textbook. It's shit but don't be fobbed off

I know some people have recommended against it but for instant relief, I find Vagisil wipes are brilliant. It's probably only every couple of months that I need one.

Also, after peeing, dab don't wipe 🙂

it's called Fluticreme, and was purchased in spain for my kids' eczema. The UK equivalent is fluticasone.

You are absolutely right, @Ruminatingly . LS is a serious condition, and I'm sorry you are suffering from it. Anyone with these kind of symptoms should absolutely see a doctor.

Finally found women who have the same issue as me !
its drinking me crazy , placemarking for a more thorough read of the suggestions later
my itching is much much worse at night ,

For those of you with diagnosed LS

How do you get a yearly check up, do you ask or are you called?

And anyone developed dark spots? Perhaps with Peri menopause?

Mine is very white or red normally, but this is new. Tmi, but looks like a cross between bruising and staining, I did try to wash it off

Yes I know I need to make an appointment, but my gp is very young male, and the female gp next appointment is probably February.

Just wading in to recommend Baume Cicaplast from La Roche Posay as a moisturiser (for normal itching of undefined reason, not for LS). It is a barrier cream. I have found GP advice doesn’t extend past steroid cream which you can’t use every day. I tried this in desperation. I had instant relief and no itching all night.

I also plan to try Kegel 8 which has good reviews.

You get called but it is area dependent. In both health authorities I have lived in since diagnosis, it's been care under GP with special interest rather than gynae consultant. In one area this was very good, very knowledgeable and caring. In the other area I made a formal complaint and discharged myself as the GP was dangerously wrong in what she was saying. It's not right but you have to advocate for yourself

Mine is white. Book the female in February if that's who will listen. I recently saw a dermatologist privately and would highly recommend doing that if the appointment is too long to wait l

Had it 15 years - never been called for a check

i would recommend what’s been suggested up-thread: if there is a walk-in sexual health clinic close to you, go straight there. It’s full of specialists who’ve seen it all before and can refer you

Just been put on dermovate cream for the itching.
Had a problem for quite a while but gp assumed it was vaginal dryness due to menopause and put on blisset oestrogen gel. However, that didn't fix it. It did make it less dry which helped but didn't fix the itching.

I have large white patches on the vulvar which are very evident so gp has put me on dermovate and being referred to consultant for lichen sclerosus.
Seems to be a bit of trial and error over what works and I've been fobbed off by a different gp who said nothing serious down there last
summer, I've been through every product on the market. I finally went back and insisted on older female gp who said it looks like LS.
Anyway, only thing that seems to make a difference is washing with water. I give a gentle shower to the area (tepid water and turn shower down so just gentle dribble). Also shower when in get in from work and before bed as any urine definitely aggravates it. That seems to keep it calmer. All the creams over the counter (canestan etc, dr wolffa etc all made it worse ). I sometimes get up in the night and run a very shallow cold bath and sit my bits in it when it's really bad otherwise I scratch it in my sleep.
I'm hoping the dermovate works as only on day 7 of using it. Seems to be a bit better and definitely not worse.

I don't think it helps that it's starts as menopause age as the doctors have just gone to to the most obvious answer. Also, I remember talking to my sister in law who also has vaginal dryness and was talking about being put on oestrogen. So you assume it's just the same as others, but the itching has been unbearable over the last year. I've brought it up at least 5 times with GP over the years but I'm thinking it's probably been LS all along (been given canestan many times which never really works )

My Sister in law was talking about having sex which is when I realised we are not having the same amount of soreness. I can barely touch the area let alone have sex as the skin is so fragile, I get sores frequently. This is what prompted me to go back to the GP.

Sorry for long post