really embarrassing itchy skin for 6 years, feeling very low, please advise...

[upthegardenpath]

I'll try to keep it brief.
My DC is now 7.5 yrs old and I've had this itchy skin since she was 1 or so.
I have been to several GPs, all of whom looked at it and were puzzled - some thought maybe psoriasis, others quoted eczema. I was even referred to the beautifully named Vulva Clinic at St.Mary's Hospital and advised by a register there that because there are a few blocked pores in the skin, I should have them excised under local and this may help.
Funnily enough, the thought of having my bits operated on didn't really inspire me to go back.
It's very embarrassing because the itchy skin is only in my outer labia bits - the skin starts to itch whenever I am too hot, whenever I set, whenever I am too warm at night, or sometimes when it just wants to. It's the kind of itch that can send you round the bend and you can't ignore. I have literally ripped the skin apart at night, on occasions, and drawn blood. There is the odd little spot that comes up now and again, then goes away, these are very sore. The skin scales too, massively, like a moulting snake. It is only in the skin where the pubic hair is, never further in nor out.
Things I have done - changed diet, eliminated most dairy and cows milk, reduced wheat and hardly ever eat bread or yeasty things, changed wishing powders and fabric softeners - now only use tallow free and eco brands and extra rise cycle on machine, wear cotton underwear mostly, don't wear anything when I sleep (haven't for years - get too hot), put an ice pack wrapped in a small towel between legs when I sleep 9really helps to keep area cool and itch away), have tried every anti fungal cream known to man without success, tried oral canteen and no real difference there either, put a drop of tea tree oil in warm water as a quick rinse twice a day (this gives relief), never wash with soap down there (only water), have tried vaseline and several remedies for eczema and psoriasis but anything too oily or designed for dry skin seems to make it worse (even if skin does fee l drier there when it's itchy).
It usually flares up around my period (I am 44) and around ovulation, then settles a bit for the rest of my cycle. Chlorine flares it up too, so can't swim in pools any more. I am a few kgs overweight, so am trying to do something about that too.
Hasn't done wonders for my sex life, as it is often worst around the times I would feel like it. Am desperate to return to normal.
In April 2014, it disappeared completely and I had a totally itch free month. I was away in France for easter and thats when it started to go away. I was eating your typical holiday diet away in france - so all the sorts of things that normally make it worse like brioche every day and lots of cheese and red wine - but it disappeared. That has never happened since. Once back in UK, it slowly returned.
Currently having acupuncture as I tend to keep damp on board and retain water quite a lot at various points in my cycle. Currently typing this whilst sipping dandelion tea as I've heard it can be very useful in expelling excess fluid. I'll try anything.

I so want to setback to normal but nothing I do seems to help.
Oh, last time I had a smear test, I was told I had candidiasis, yet all anti candida stuff hasn't helped either, including eliminating all foods that can flare candida up for a month.
Sorry if this is very long - I didn't want to miss anything out. I am very tired from itching most nights at some point and would just love to get back to normal. Thank you.

Sorry, not quite the end, the derm said the gp dished out the pred to my son as if it were candy. Makes one wonder

Paget's disease of the vulva? My mum had this and the itch drove her mad.

Yes, because the National Eczema Society is all knowing. I prefer to my research to come from evidence based, up to date sources. Not a biased, out of date one. There's several Facebook groups with thousands of members who are ex steroid users going through withdrawal and many who are desperately trying to wean off them and adopt a more natural, gentle approach to treating their eczema. I predict an exposé on this subject very shortly.

I have had this since I was a teenager- 20 years or so. Tbh I haven't seen a Dermo about it for around15 years. Alcohol aggravates it enormously partic beer and red wine. So does cheese, hot baths, stress, washes, my cycle, pregnancy. I do lots of the things mentioned above but most often take an anti histimine partic at night when the itching it worst. The snake scaling is horrible isn't it.

So undignified!

Please read up about vulvadinia. It is a nerve problem that effects the labia. It is hormone related. It also occurs with menopause and emotional trauma (both of which I am having). I have been treated with everything, tested for everything - the only thing that I have found that works for me is to take evening primrose oil religiously every day. I also break open an Evening Primrose Oil capsule and apply it to the area. It works and I have been symptom free for a few months now.

OP the miscarriages sound tough . Have you had counselling? If you follow the theory of mind/body medicine then physical symptoms can reflect retained emotional trauma and given that you've tried so many routes without success this may be worth considering? Interesting to see minchmooch mentioned a similar connection above.

Also maybe see a good naturopath wrt candida diet and supplements?

Hope you have a good outcome, op. Would second the advice for looking into doing the candida diet and also seeing a naturopath.

Op I have exactly the same, I've had it since about 4 weeks after my daughters were born and they are 4.5 now. This has been interesting reading.

I had a truckload of IV antibiotics during pregnancy / after they were born and I also wonder if it started with an allergy to the bloody maternity pads.

I don't have the scaling, just the bloody itch and have also broken the skin at night.

I have never been to the doctor but probably should.

I remember when I was about 20 a waist pointed out that my hair is white in a particular patch. I've scarred the skin so badly by itching that it grows white

Hi OP

I know someone who has something like this on his peeper! Skin on the tip was red raw, got sore during sex, never went away. Cause untold amounts of issues and frustration.

He was given emollient cream to use in the shower and 2 steroid creams to use. One in the morning and one at night. It worked! Steroid cream is short use only... It can cause thinning of the skin. If you haven't tried it yet, maybe reconsider?

For me I'm a bit more natural... Eczema comes up and I'm in the bath with raw unprocessed coconut oil. I flippin love the stuff

A bit of hydrocortisone might calm it down a bit. You might not like to use steroids but you can't really carry on like this. Hydrocortisone is mild, you can get a very low % if you prefer.

What about Eurax cream or something similar? The scratching may be irritating it further so something to stop the itch might help and also give relief. (No idea if you can use it down there).

Antihistamines are the answer to night time itching. Plus they make you sleep!

Beabar the crux of your son's situation seems to be- reading your posts- that your GP gave the wrong treatment. GPs tend to know nothing about skin conditions in my own experience. What you quote about side effects of steroids is not new. It's been known for decades. I had severe eczema 30 years ago and used steroids sparingly. It has been known for decades that they can cause skin thinning and if absorbed can cause other issues. The 'rebound' situation is well known too.

To come on here and dismiss the work of the National Eczema Society is really arrogant, I'm afraid. Not sure how they advised treatment for your son- they don't diagnose or suggest treatment in the place of a dermatologist. The link I posted is quite clear about the value and side effects of over-use of strong steroids. As I said, you don't need to lecture me on the treatment of eczema- I've seen consultants myself in the past, both my adult children have too and have ongoing treatment with other more modern drugs that are not steroids but are only obtainable from a consultant.

OP I really suggest you seek advice from another specialist and if you can afford it see one of those I listed privately if you can't on the NHS. I am not a dr but from what you say I suspect it may be that you are peri menopausal and need a weak hormone cream.

OP A few posters have suggested using hydrocortisone on your vulva. Worth mentioning that you cannot buy this over the counter. The instructions on the 1% hydrocortisone say explicitly that it's not to be used on the face or genitals- for good reason (skin thinning and possible further irritation.) Ironically, you can get 0.5% hydrocortisone which is weaker, but only on prescription.

However, no good chemist will sell you hydrocortisone without asking you what you need it for. I once tried to buy some when on holiday for a small patch of eczema that had come on my neck and they refused- despite me saying I got it on prescription and knew how to use it.

You can use it under supervision from a consultant (on your bits) but it has to be carefully managed.

You can get hydrocortisone over the counter. I've bought the E45 with hydrocortisone and Eurax with hydrocortisone otc though there's a much lower percentage in it.
However, I bought 1% hydrocortisone from B&M (I think, or a similar type of shop) it was an insect bite and sting cream but it was definitely hydrocortisone, I still have it in my bathroom cabinet.

Actually, I bought it from tesco I just looked at the tube.

If you go to Boots or any other chemists, it's behind the counter and they have to wave it at the pharmacist. That's why they refused to sell it to me when I needed it for my neck. They actually asked where I was going to use it. I know that this doesn't happen all the time as DH and DD have bought it elsewhere - E45 plus hydrocortisone- but it does depend on where you buy it. We don't have any B&M or whatever where we live.

As I said, although you can get 0.5% this is for the face so you can only get it on prescription , which is a bit ironic as people will pick up 1% and use it wherever.

Thanks, everyone
To answer some of the points raised and questions asked:

-I'm not totally averse to the idea of steroidal cream, but only as a last resort and really because I want to get to the root of why this is happening to my skin, rather than throwing yet another cream at it. Looking from the inside out, so to speak. I have tried Eurax many times but it did next to nothing. I've also tried every topical anti fungal there is.

• I'm not currently putting any creams on the area, because I've given up on the ones I have tried and wanted to get some new advice first. You've all been very helpful. Several heads are better than one

• I have had this itch since my DD was 1 (she is now 7) and that was when i was still far off being perimenopausal. I had all my hormone levels checked last year, when TTC and having repeated MC. They were all fine, except for AMH (anti mullerian) which was low (pretty standard given my age) which indicates I have less capacity to ovulate. Bit funny, as I ovulate every month and certainly at that point was falling pregnant easily

• I may well look at seeing a naturopath Beebar - I have followed aspects of the candida diet, but overall it's bloody hard to do all of it, all of the time. I do my best...for now am concentrating on acupuncture to resolve or reduce my damp issues, plus limiting or cutting out foods I know aggravate.

• Suzietwo that sounds awful you have my sympathy Can I ask why you haven't seen anyone about it, for so long? It's so frustrating when health professionals etc cannot find the answer...I hope you find relief one day soon.

• whereyouleftit Jesus! That was a scary link to open - your poor mum. Having read up on this, I don't think that is what I have, thank goodness.

minmooch thanks for your advice too - def not vulvodynia. My problem is itch and scaling of skin. There is no pain ever. Only sore if I scratch at night too vigorously sometimes.

• PollyPerky thanks for the advice - I have made a note of the lady at the Royal Free, who is local to me. Private is not an option for me sadly, but am intrigued by the name you have given me. That said, I saw someone apparently very expert in vulval problems, when I was at St. Mary's vulva clinic and she suggested cutting out any blocked pores to sort the itch out. It did rather dent my confidence in the more medical approach to this...I wouldn't use any steroids down there of my own volition, without first consulting with a doctor, but as others have said most GPs really don't have the specialisation to find a solution for me. It's maddening.

• boredofthinkingofnewnames I hope you can find relief one day. I would visit the GP, at least to get a derm or other referral. It can't hurt. At least you set the ball rolling. I know I have done this and not gotten anywhere in 6 years yet, but you may be luckier than me!

I'd love to hear from anyone who has had similar problems to mine and who has managed to resolve them. Now that would make me very happy

Night all.

sleepwhenidie thank you I have made my peace with all the little water babies I have lost. It took me a while, but I have a fantastically supportive OH and DD and friends, which helps. I am ok on that front nowadays but you are right - mental health and physical health are most definitely intertwined.

I wonder who you saw at St Mary's. I get the impression that there is a slight bias in treatment suggestions as gynaecologists are surgeons and suggest surgery as a solution and dermatologists are whatever non-surgeon doctors are called and are more likely to offer medication.

I have this exact same thing. Answer is Betnovate ointment. When you use it it reduces the inflamed area and relieves itching and allows skin to heal. Now I only need to use a tiny bit every couple of weeks as the area has healed over the years. You can search for answers for years and live in misery or just get the Betnovate from the doc and move on with your life.

I don't know if I had suffered as badly as you, but I had got to the stage where I was having to use Eurax a couple of times a day to stop the itching and to wake in the night to apply it again. I was also getting the peeling skin, but this seemed to be as a result of the skin getting particularly inflamed.

I stopped with the Eurax, Vagisil etc and switched to aloe vera gel and to a witch hazel gel. The witch hazel I find more effective, but it does burn a bit if the skin is irritated- although it is bearable and takes away the need to scratch.

It hasn't proven a complete cure, but I can now go several days without needing to apply it, although I tend to use it every day to be sure of remaining completely itch free.

Totally agree with minmooch .

I too suffer with this itch I am 49 .

No-one else I know has this and I have found this thread illuminating.

I can connect my itch to hormones. It occurs just before my period and during ovulation. The only relief I get is to take an antihistamine and wear cotton pants.

Maverick. I have been to see a gynaecology consultant on a number of times. Diagnosis was a matter of elimination - treat for everything ( even though all tests clear) which was done over a course of 6 months. I researched vulvadinia and there is more info from the US in how women are treating this. Evening Primrose Oil capsules have worked for me over the years - had a pain in my left breast for months and months. Hormone tests revealed an imbalance and EPO sorted that.

I was at my wits end with this discomfort (sometimes pain, sometimes itch, sometimes burning, sometimes a feeling that everything down there was twice the size as normal even though it wasn't). I decided to start up EPO again and read that women were applying EPO to the area. The relief took a couple of days but all symptoms have gone. I take the EPO capsules daily and now only need to apply oil direct if I have a particularly stressful time.

I can only stress that if you are 45ish+ then it's more than likely to be low oestrogen. Also in the 2nd half of a cycle, your higher progesterone levels cause temperature in the body to rise, can cause inflammation and affect the acid balance of the vagina, making it less acidic so conditions like thrush can occur more easily. You can have thrush that is barely visible except for itching and burning.

I had this problem for years. I think I had mild thrush because a lot of the time because when I had a swab done it came back as thrush even though I had no discharge or other visible signs. I went through a phases of dosing myself with Diflucan once every couple of months to try to contain it, as well as massively reducing sugar ( in fruit and dried fruit too) and refined carbs- not that I had much to start with anyway.

However, the biggest improvement I have had which - touch wood- seems to have cleared it for the moment - is using Ovestin, a weak oestrogen cream twice a week.

You could have vulvodynia OP though this is more often pain and burning, rather than itching.

Blood tests for hormones are never accurate as they only test your hormones on that day and the next day they could be very different if you are in peri-menopause (which if you are 45 -ish is more than likely.)