So fed up of vulval eczema

[Anonymous7890]

Does anyone else have vulval eczema? It’s making me so miserable.

I had it years ago and now it’s come back and seems much worse this time. Last time they gave me a steroid cream, I used it very occasionally for a day whenever it flared up and that sorted it. They’ve prescribed me with hydrocortisone again and I applied it for 3 days and it went. But a month later it’s flared up again, I applied it for two days and it seemed almost gone so I stopped as I’m worried about it thinning the skin down there. But then a day later it came back so I used it for 3 days and it’s still lingering.

I tried a bit of Vaseline yesterday but read conflicting information about that online so don’t think I will again.

I even took an antihistamine this morning as heard that can calm eczema down.

The GP did swabs to check it’s not something else and everything came back
negative.

I’m suffering a recent bereavement and just want to focus on healing from that and this is making everything so much harder 😕

Check with GP or pharmacist obviously. I am very relaxed about topical steroids as I have used them on and off since childhood with no skin thinning (from strong to mild). I find usually that you do need to use them for longer than a couple of days for them to fix the issue. Appreciate the skin is delicate there.

I expect you may have seen this, but posting in case, not

Thanks for that last link: apparently there are special vulval clinics you can ask for at GUM

GUM vulval clinics
You can self-refer to your local genitourinary medicine (GUM) clinic. GUM clinics have their own vulval clinics, and if you want to attend a GUM vulval clinic, you should inform the clinic that you have a vulval problem when you contact them to book an appointment. You will then be allotted to the specialist vulval clinic rather than the general GUM clinic, which deals with all kinds of genitourinary problems.

Have you ever been prescribed a topical calcineurin interceptor like Elidel or Protopic? I have the former for psoriasis in delicate skin areas where steroids are less than ideal (primarily my face) - it's off-licence for psoriasis but is licensed for eczema.

Agree with hydromol. You can wash with it or moisturise and it’s very bland and safe

I used to cut holes in the gussets of tights too! Now I just very rarely wear them. And yes too scared to go swimming or anything like that as the chlorine has caused it to flare up before. It’s like it’s taking over life isn’t it. GPs don’t seem to take it seriously and it really gets me down.

That is good to know. I might try that as really don’t want to spend £££ going private if I can avoid it.

No I’ve only ever been prescribed hydrocortisone. Plus fluconazole for recurring thrush.

Thank you so much for responding ladies and for your advice. I’m so sorry to hear others are suffering with this sort of thing however on the other hand it makes me feel less alone that others understand how horrible it is.

Please do ask about this as an option as it's a non-steroid anti-inflammatory that doesn't thin skin.

I just called a private clinic to request details of how much it would cost to see someone privately and they said the earliest appointment they have with a doctor who specialises in vulval dermatology is 28th January!!! For private! Feeling really down now as I kept thinking at least I am lucky enough to have savings to see someone privately if need be and now I find out I’d still have to wait months. FML! Wish I didn’t have a vagina.

I suffer with this too. Other than the ideas already suggested, I find Dead Sea salt baths help - use half the bag. When it flares up, have a salt bath every day. When it’s calms just do it once a week or so.

I also use Vagisil daily sooth and protect cream with oatmeal as a more effective alternative to sudocrem.

Thank you for the advice. So sorry to hear you suffer with it too.

I don’t want to do down your GP OP but imo you really need an expert dx which may be most accessible via a sexual health/GUM clinic. Otherwise, as you said, it can get very confusing and you’re just guessing.

I don’t know if this is still the case but when I was going I think you were able to just rock up without an appointment and wait and eventually you’d see a doctor.

Thinking more about it, I was given a gel which created a barrier so my skin wasn’t irritated by urine and told to wash with nothing but water or emollient cream if you find it soothing. Maybe a pharmacist could advise?

You have all my sympathy, I’ve had two bouts of vulval symptoms - the first time it was endless itching and the second time my skin was splitting for no apparent reason - and I was in tears at the clinic (where they were exceptionally lovely to me). It’s awful.

Thank you. Yes I think I need specialist help. Will see if I can get an appointment at a gum clinic. Was thinking about going private but it’s a two month wait even to see the private dermatologist near me 😭

I use protopic and it is a lifesaver. I was prescribed it by a dermatologist (I'm not in UK so was refered privately by my gp). I get eczema all around the mons venus and the creases between it and my thighs. I also get odd patches in awkward areas like my eyelid or side of mouth. The dermatologist also recommended keeping the area dry and moisturised. It's quite difficult at times. I wash with a fragrance free shower gel, use aqueous cream to moisturise while in shower. I no longer allow my body to air dry, always use a towel. I find mine is hormonal, I'm supposedly in menopause (I'm 56)but still getting a period. It appears the week before a period is due. Not showering immediately after exercise or sitting in damp swimsuit when on holidays also makes it worse.

Is it any better when you're on your period OP? It used to help me

It often is yes. Although thinking about it, the current flare up I’m having came on a few days after my period ended. I wonder if it’s to do with the sanitary towels. I’ve ordered some organic cotton ones.

Is Protopic a stronger steroid?

Use aqueous cream to wash your sensitive areas instead of any soap/showel gel, recommended to a friend by a GP and it sorted the issue

No, it's a topical calcineurin inhibitor as I described above. Elidel is another type.

I used to use aqueous cream for washing but I thought latest research is that it makes eczema worse? The national eczema society says not to use it eczema.org/information-and-advice/treatments-for-eczema/emollients/#washing

Please note: Aqueous cream is no longer recommended, either as a leave-on emollient or as a soap substitute. In addition to being a poor moisturiser, it contains the ingredient sodium lauryl sulphate (SLS), which can irritate the skin and make eczema worse. Several emollients have been reformulated in recent years to remove SLS. Apart from aqueous cream and emulsifying ointment, no emollients available on prescription in the UK still contain it.

This is typical of a GP. After years of being fobbed off I discovered a recommended (online by a hospital) maintenance amount to use after the inital 7-14 days, of 2/3 times per week.

You could also try Napiers sensitive area herbal cream which I have found really good for similar.

Thanks. I’m going to contact my GP tomorrow to ask how long I should use it for and how frequently etc, plus a suggested emollient. So annoyed at how much they fob us off when it’s “women’s problems”! It was a female GP too!!

I'm sorry this is happening. I don't have it on my vulva but have always had eczema on parts of my body

Steroids thinning the skin is an outdated myth, you can get topical steroid withdrawal but usually it's on a higher % over years of use. I've only ever read about it online and I've had eczema all my life and never had withdrawal.

I'd go GPS and try and get something higher strength than 1% hydrocortisone, that's nothing really. Use it properly not sparingly to completely blast the eczema away (the Big Guns), then you can drop down to moisturising and hydrocortisone for smaller patches and maintenance.
Also I know you might think it's crazy but I really recommend a cap or squirt of Milton in a warm bath and soak in it. It really calms down my flare ups. Also maybe try pre and probiotics, I like the ones from Garden of Life - they have ones specially made for thrush/vaginal health I believe