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

(62 Posts)
upthegardenpath Wed 04-Nov-15 10:06:02

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. flowers

Hobbes8 Wed 04-Nov-15 10:12:48

Have you seen a dermatologist? It's not clear from your post. I'm not sure several GPs would be any more helpful than one GP, in that none of them would have specialist dermatology training.

Mrsmorton Wed 04-Nov-15 10:13:50

I had this for years. Misdiagnosed as fungal but finally now diagnosed as eczema and under control. Total relief for me.
It literally took 10 years to get the right diagnosis.

I don't want to be a cock but some paragraphs would have made your post a lot easier to read. Sorry flowers

The relief of being able to sit in a meeting and not itch to the point I break into a sweat it just phenomenal and I'm sleeping much better too.

Were you bathing, showering or swimming in France? Bathing for me makes it worse unless I put loads of salt in the bath. I don't have a bath any more and that has helped.

Hobbes8 Wed 04-Nov-15 10:14:03

Oh and it could be lichen schlerosus. I have it (although I may not know how to spell it!) and it requires steroid cream rather than anti fungal, but it has to be used quite sparingly on the genitals because it can thin your skin.

Mrsmorton Wed 04-Nov-15 10:20:44

Yes, I'm lucky that on of the GPs has a special interest in dermatology. He said if it didn't respond to eczema treatment, they would investigate for lichen sclerosis.

upthegardenpath Wed 04-Nov-15 10:22:50

Sorry about typos - bloody autocorrect on ipad isn't helping.

Apparently not lichen schlerosus Hobbes (GP tested) and the vulva clinic lady was part of dermatology, apparently...

Thanks Mrsm - can I ask what helped your eczema, in the end? I've never had eczema anywhere before even as a child. Not keen to use steroidal cream on bits, though one GP did offer it to me. No, I didn't bathe or swim in France because all outdoor and was too cold. I usually only shower over here. rarely bathe and if so, use epsom salts. Also, I was in France this year, same place, same time of year, same length of stay - the itch didn't disappear this time, but got worse sad

upthegardenpath Wed 04-Nov-15 10:42:46

maybe I need to return to my GP then....problem is when you see different medics over the years and don't have any continuity.

ggirl Wed 04-Nov-15 10:46:38

Op have you never tried steroid cream?

Ime its only thing that works for eczema ,besides religious emollient use

upthegardenpath Wed 04-Nov-15 10:59:45

Hello ggirl, no I haven't tried steroid cream, as I am worried about the thinning skin side affect. I suppose I should go back to GP if nothing else works and see if it does help, though.

Thing is, though the skin is sometimes scaly and shedding, I have tried several eczema creams (natural and more chemical ones) but although they often have a good effect for a couple of days at most, this then fades away and the itch returns, even though I continue using cream.

What definitely makes the area worse are creams which are too oily/greasy, which some emollients for eczema seems to be.

Beebar Wed 04-Nov-15 11:09:02

Do not ever use steroids in any shape or form - pred or topical... They are the devil's work and are currently under review with the FDA.

Check out the book 'The Eczema Diet'. I don't follow it religiously and not agree 100% with everything in it, but it gives loads of invaluable advice.

Also check out this site:

Corticosteroids are merely a band aid and can mask signs of infection, can worsen eczema, can cause awful, life changing side effects. They are extremely difficult to wean off of. Do not touch if you value your sanity and long term health.

Beebar Wed 04-Nov-15 11:11:30

Also, they are changing the way Eczema is treated. Instead of there being a universal way of treating eczema, through research it is becoming much more of an individualised approach.

TurquoiseCat Wed 04-Nov-15 11:11:36

Eczema can sometimes be a symptom of digestive problems. I have eczema on my hands/between fingers and I also have a fatty liver (slightly overweight).

My eczema is always there, but flares up when I eat/drink fatty foods (lamb mince and milk in my cases). It is much more manageable when I eat lots of fruit/veg, fibre and exercise more. And actually get decent sleep rather than binge watching Netflix!

I manage the eczema with hydrocortisone cream (on really bad flare ups) and diprobase cream day to day (prescribed by doctor). E45 had NO effect except to make my hands greasy! Anti-histamines also help manage flare ups.

Beebar Wed 04-Nov-15 11:18:11

Watch the documentary 'Fat, Sick and Nearly Dead'. The UK climate and an unhealthy, overly processed diet are largely to blame for the high incidence of Eczema and other skin conditions. Poor gut health is definitely a culprit. Sorry, but your diet sounds shocking. Heal yourself from the outside in.

PeaceOfWildThings Wed 04-Nov-15 11:26:21

How often do you replace your mattresses, bedfing, boil wash covers, vacuum, etc? My friend found that hard floors, a new mattress and frequent hot washes and vacuuming helps. Worth having allergy covers too, and a filter to the vacuum.

Or move to France? I would!

PeaceOfWildThings Wed 04-Nov-15 11:28:46

It could also be stress related. Mindfulness and general heathy relaxation/cbt are great.

Mrsmorton Wed 04-Nov-15 12:23:15

I used steroid cream for a week and then went absolutely bonkers over emollients. I was prescribed a shower gel to use as well as 2 creams to use at other times, I think they were double base creams and I literally slathered it on.

I don't think steroids are the work of the devil in the short term.

Stress does make it a bit worse but it's totally under control now. I could kiss my GP for his correct diagnosis. It's worth mentioning that I had been to see a dermatologist at guys hospital and he also diagnosed it as a fungal infection.

I went to new GP and said "I've got this fungal infection that hasn't responded to any treatment ever" he said "it sounds like it's not a fungal infection then!" Which was clearly correct. When I started treating it for eczema it responded so...

Mrsmorton Wed 04-Nov-15 12:24:31

E45 is like setting fire to myself. It's absolute fucking agony so I wouldn't recommend it!

Cetraben is ok, better than nothing but I had to get it under control with the steroid cream first.

BIWI Wed 04-Nov-15 12:32:38

Beebar how does her diet sound shocking?! She's eliminating all the things that she should be, to try and rule out something like candida.

upthegardenpath what happens if you avoid all creams? I'm just wondering if there's something in what you're using that you're allergic to?

The link to your menstrual cycle is interesting - I had exactly this when I was suffering from an over-growth of candida, and had excruciating thrush almost every month for 2 years. It was always worse at the start of my period.

If you've been told you have candida albicans from a smear test, I'd say this still sounds like the most likely candidate, even though treatments you've had haven't worked so far.

Have you been prescribed Diflucan? Or bought it over the counter? (It's one tablet only)

Are you on the pill? That definitely made things worse for me.

And have you tried a good probiotic? Not something like Yakult or Actimel, but something from a proper healthfood shop - acidophilus is one to consider. It will be stored in the fridge to keep the live bacteria alive.

One other thing to consider is what might have triggered it in the first place - for me, it seemed to have stemmed from long term usage of antibiotics, which effectively wipes out all bacteria in your gut - the good as well as the bad.

You have my every sympathy as I remember only too well how horrible it was flowers

upthegardenpath Wed 04-Nov-15 15:21:45

Thanks for all your messages - will try to answer everyone.

Beebar tend to agree with you about nasties in steroidal creams, hence why I have avoided using them so far. I have been healing myself from inside in for a long time. I take probiotics (very high dose ones), I avoid dairy (only eat goats cheese occasionally) and drink Oatly. I am mediterranean in origin and have a good diet. Very little meat, loads of veg and fruit every day. We don't eat any packaged food at all, always cooked from fresh. If in France, we occasionally succumb to the amazing cheeses and some wine and brioche. It's a holiday ffs! The rest of the time in UK, those food are banned for me. I also eat low salt. How you conclude that my diet is shocking is a mystery to me, and to others smile

Turquoisecat I am only a little overweight, thankfully and on the road to getter fitter. I'm not aware of any conventional health issues, other than this blasted itch. I agree with you that diet plays a part in managing some skin conditions, but haven't yet found a link between any foods I eat and my itch, sadly.

Peaceof I vacuum a lot, with a good cleaner. I'm not obsessive about cleaning, but I try to dust every week. I always wash bedding at 60 degrees and also found a laundry liquid that kills fungus and bacteria, just in case.
We air every day and only have hard floors. The itch doesn't change one bit if I go anywhere else (apart form that April 2014 occasion - but then we went back this year and the itch was worse, if anything). I have been a little stressed with a bad family problem to do with my mother last year that has merged into this year. Am dealing with it though and moving on, but you're right that stress can't help.

MrsM can't believe the term at Guys also got it wrong hmm - it doesn't exactly inspire confidence! So much depends on the GP you get on the day, but will try again. I agree that if it's eczema, that also needs to be looked at from the inside out, not just by throwing topical stuff at it. That's why i ma having acupuncture and looking at lifestyle and diet changes beyond the ones I have made already.

BIWI thanks for your reply - I had diflucan over the counter. No different. Was on the pill in my 20s, pill-free since 2005 and no intention of going back on it, as I don't like the idea of my body being interfered with by artificial hormones, at my age.
I have had very few antibiotics in my life and have been taking very potent probiotics for about 3 years. I also drink apple cider vinegar diluted i warm water, occasionally.
Interesting what you say about your symptoms. I have had actual thrush about 5 times in my life. I never have thrush discharge normally (sorry for TMI) nor any other classic symptom of thrush.

I have had a slightly lengthy gynae history, in that I was TTC for 3 years, until recently, and had 8 miscarriages in that time. MC due to old eggs. All other blood test and exams normal. Have made my peace with that, but am knackered and have been trying to kickstart to a newer, more energetic me. I used to be very get-up-and-go, but the MC took it out of me. That's also why I gained weight, because i was tired for so long, itching at night, knackered from MC and not moving enough. I was a size 10 when my DD was born in 2008, but once the itch started in 2009, weight slowly crept on.

PollyPerky Wed 04-Nov-15 15:32:06

Steroids are not evil. Used correctly they can help people with severe eczema.

OP- you ought to ask for a referral to a gynaecologist who is an expert in vulval issues. have you seen Prof Wendy Reid? She is a UK expert on vulval disease and works privately and from the Royal Free London. Also Miss Deborah Boyle.

If you are now 44 it could be something as simple as low oestrogen levels- perhaps linked with your fertility issues? Soreness of the vulva as you describe can be a sign of low oestrogen and is easily sorted with local oestrogen cream. If you have tried everything except this then it's worth trying- only from your GP- but I'd push for a referral to Wendy Reid or Deb Boyle.

Katie2001 Wed 04-Nov-15 15:32:53

My niece lives in France and suffers from eczema. When she comes over to the UK, the water (as in when she showers/bathes) makes her skin itch, when the water at her home doesn't. I know this is a bit vague, but wonder if it's something they do or don't do to the water here.

Beebar Wed 04-Nov-15 15:58:55

upthegardenpath apologies, I skimmed through. Wine, cheese and brioche are delish, though definitely no good for your skin.

Beebar Wed 04-Nov-15 16:28:34

P.S. Are you sure you don't have a gluten intolerance? Have you tried changing your milk over to rice or soya? A lot of fruits and veg are high in salicylates, natural MSG and amines which can all cause rash and itchiness. Also foods high in histamine. Look up 'salicylate intolerance' and 'low histamine diet'. As a pp has mentioned, you may want to have your hormone levels tested.

Steroids are evil Polly, my son suffered with Red Skin Syndrome. Steroids made his skin a thousand times worse. Inform yourself before providing anecdotal advice. Using steroids for even a couple of weeks can cause serious side effects. That is with following your Dr's advice to the letter.

Even if used correctly, ALL medicines have side effects!

Stay away from this shite

PollyPerky Wed 04-Nov-15 17:37:28

Beabar I can't let you get away with comments like that - sorry. Please don't patronise me. I am an educated and intelligent adult in my late 50s, who knows a lot about this. How rude of you to make comments like that when you know nothing about me.

As a former eczema sufferer for many years, and with DCs who had it too, I've done a lot of research on this, been to consultant immunologists in London (professors) and taken advice from the National Eczema Society. I used a fairly strong topical steroid- Synalar- for many years on severe eczema on my hands with no ill effects. The NES will tell you that correct use of steroids is absolutely fine if guidelines are followed. Many people are being kept alive by the use of steroids- asthma for example. Yes, all drugs have side effects but you are being very narrow minded and incorrect if you think they have no place in modern medicine.

PollyPerky Wed 04-Nov-15 17:40:03

If we are trading links Beabar have one from me.

National Eczema Society steroids

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