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Original poster

At the end of my tether with suspected genital eczema. Advice needed

56 replies

Noddle2015 · 02/02/2022 20:45

Desperately looking for some advice.
For years on and off I’ve been diagnosed with thrush and frequently get abscesses on labia majora area. From my first pregnancy I tore pretty badly and had perianal stitches, frequently get piles from first birth also.
I’ve been checked for stis in past all came back clear, at one flare up I was determined I had herpes but doctor was adamant it was irritation and to simply bathe in oliatum.
Right now I am having the worse time I’ve done nothing but cry for two days. The skin involving my perianus and labia majora around it is red inflamed and painful, I also have terrible piles. Treating the piles and as for vuval area I’ve been prescribed antibiotics for uti, 3 dose course of thrush tablets and cream over 9 days. I’ve changed all my washing powder to non bio and botanical skin sensitive conditioner, I’ve washed in hibiscrub, bathed in Epsom salts, tried dermovate and hydrocortisone in affected area.
My discharge is relatively normal, however my periods have been getting further apart from 26 day cycle to 36 day cycle on average. I also had a baby 11 months ago so put this down to that.
I am at my whits end, I am in so much pain, and my skin feels raw. I can’t get into my doctors I’ve tried a local gym clinic and still waiting on a call.
I have not spots or ulcers on the area just raging redness. Am in agnoy having to wear underwear and pants and I can’t wipe properly going to toilet as the pain is shocking.

I just really don’t know what to, none of this probably makes sense and rambling but I was just hoping that somebody has been here before or can give me some advice. Am sorry for the long post.

OP posts:
Policyschmolicy · 02/02/2022 20:47

This could be many things, including lichen sclerosus. If it is, the proper treatment is potent steroids but they will help.

Valhalla17 · 02/02/2022 20:52

I have similar issues op and I make a warm bath with 3 caps of dettol. I don't know why but this soothes it and then I slather on uniroid ointment at the back, leave for 20mins and the follow up with a layer of sudocrem all over (back and front external).

Original poster
Noddle2015 · 02/02/2022 21:08

@Policyschmolicy who would I be best asking to visit with regards to linchen sclerosis? Am not really getting anywhere with my gp.

@Valhalla17 is it a specific detol for skin? Or the chemical? Can I buy the uniroid from the pharmacy?

OP posts:

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RinseRinseRinse · 02/02/2022 21:20

I had similar irritation, eventually tracked it down to a reaction to loo roll.

I started using water to rinse off after I used the toilet, then just gently patting dry. I used a (clean) squeezy shampoo bottle initially. It's gentler on sore skin than wiping. Also sleep without knickers if you can. Hope you find some answers soon, can't overstate how miserable it is.

Policyschmolicy · 02/02/2022 21:22

Honestly? Your GP should be able to deal with this in the interim whilst awaiting specialist referral. It could be to a vulval dermatologist, or it could be to a gynae clinic. The steroid I use is dermovate, so you could ask for that. It’s a fairly standard treatment. And if the skin is raw just use Vaseline as a barrier. I wouldn’t use the dettol suggestion, that’s not what it’s for. But if you have some hibiscrub you could try that.

umberellaonesie · 02/02/2022 21:23

Gynae referral for the suspected lichen scelorosis

cheekychaplin · 02/02/2022 21:24

Genital psoriasis?

LefttoherownDevizes · 02/02/2022 21:27

I would ditch the fabric conditioner, airways residue left in.

How old are you? And could you be allergic to anything? I've heard of similar before and it was an allergy to honey.

I would stop all the hardcore treatment if it's not helping, that in itself could be causing significant irritation.

I've got vaginal atrophy from peri menopause which is driving me mad, sounds blissful compared to yours however

Original poster
Noddle2015 · 02/02/2022 21:28

@RinseRinseRinse I was actually discussing loo roll with my partner earlier this evening. This seems to aggregated a lot after going the toilet wiping, am not ‘dabbing’ myself and I can’t tolerate wiping. I will definitely try the rinsing!
The sleeping without knickers has been the only way I’ve been getting a decent nights sleep lately but now due to the lovely piles thrown into the mix am having to sleep with time on so I don’t get the treatment on my nightwear.
@Policyschmolicy yes unfortunately they just tell me to bathe in oilatum and that’s about as far as I got last time. I read a lot about betnovate and actually asked in pharmacy for it but all they had was hydrocortisone. Ive been trying to get an appointment with gp for a while so when I eventually get one I will ask about both, thank you.

OP posts:
Original poster
Noddle2015 · 02/02/2022 21:33

@LefttoherownDevizes I shall ditch the fabric con. I am only 28, I’ve pondered if it could be hormone related with periods becoming further, my mum started menopause early but no where near this early. You say honey I’ve recently ditched sugar and replaced it with honey in my hot drinks? Do you think this could be a possibility? I do drink a lot of hot drinks Confused

OP posts:
BrocolliHamster · 02/02/2022 21:33

Ask your GP to refer you to a gynaecologist. It could be eczma, or it could be lichen slerosus in which case it will need to be treated with stronger steroid creams. Push for a referral, as a GP really doesn't have the expertise to offer the correct diagnosis/treatment.

I have lichen sclerosis, and when it was bad before treatment the slightest touch, even washing can create tears in the skin. It's possible that if eczma is a misdiagnosis and it is lichen, going at it hammer and tongs with hibiscrub, Epsom salts etc will have been making it worse. I would ask for a referral to gynae and for now wash very gently with plain water and applying hydrocortisone

Original poster
Noddle2015 · 02/02/2022 21:38

I have stoped washing with the hibiscub for the time being as I did fear that this could be too harsh and making things worse. Am finding it so hard to get anywhere with regards to seeing somebody and being referred, with covid everywhere has a backlog and doesn’t seem to want to have any face to face appointments, and right now am desperate. Am hoping tomorrow will be a lucky day and I can get in with my gp and go from there. So for the time being am I best just sticking with water, cutting out fabric conditioner etc and just washing and rinsing with plain water?

OP posts:
Original poster
Noddle2015 · 02/02/2022 21:39

Also, is there anything I should be doing relating to diet? Did anybody find cutting certain things out?

OP posts:
MerryPoppings · 02/02/2022 21:41

You definitely need a referral, preferably to a vulval dermatologist.

I suggest washing using Dermol 500. It is antimicrobial and also relieves itching. You can get it on prescription or over the counter. No soaps, wipes or anything else. Then use a mild cream like Cetraben morning and evening.

This is what the vulval dermatologist recommended to me when I had vulvodynia (nerve pain) and very sensitive skin. That should help while you wait for a referral.

Original poster
Noddle2015 · 02/02/2022 21:41

Everybody with experience of lichen sclerosus did you all have the typical Shute patches? Or could it also be just red and inflamed.

OP posts:
Original poster
Noddle2015 · 02/02/2022 21:44

White*

OP posts:
jenn88 · 02/02/2022 21:45

Could a simple warm salt bath help soothe?

CaravanConcerns · 02/02/2022 21:47

You have my sympathy I struggled a lot with similar in my 20s and it was unbearable!

It's much better now and has improved throughout my 30s, I think in part due to managing it better. I switched to fairy non bio and ditched all fabric conditioner, only wash with water down below (MN sin I know!) and use plenty of aqueous cream as soon as I get the smallest twinge. If it escalates I also use hydrocortisone but by that point it takes 2-3 days to really settle.

Agree with pp that it could be allergic, that's what the nurse suggested to me when I was struggling most with it, might be worth trying a piriton to see if it helps at all?

Really hope you feel better soon, it's awful to have to deal with but hopefully the GP can help you and you can find some ways to bring it more under control in the mean time.

PopsyPie4 · 02/02/2022 21:47

I suffer too and I was very lucky I changed GP a few years ago and my new one is excellent and referred me to the hospital dermatology unit.
After years of agony I finally live pain free. I do have to keep on top of things, or I can get a flare up, but I feel “normal” most days.
The main thing that helped the healing was Betnovate ointment - a topical steroid treatment as someone else mentioned earlier. I’ve been given the betnovate cream before but I felt it made my knickers damp and caused further irritation, so the ointment works best for me.
I switched my shower gel to Sanex SLS free.
Doctors may give you something like Hydromol and tell you to only wash and moisturise with that, bur psychologically I can’t only was with that - I feel dirty! So here’s what I do - after my Sanex “proper clean” I use a small amount of Hydramol in the area and rinse that off so it leaves a slight layer. Later in the day - when I go to the loo - I’ll apply a small amount more as a moisturiser.
Additionally, I was my underwear separately with Fairy non-bio and an extra rinse (no softner)
The rest of my body is fine with our normal detergent and softner.
There’s been a lot of trail and error, I’ve suffered for about 7 years and only has it under control for about 3 years.
If you have any questions I’m happy to help Smile

Roadhouse111 · 02/02/2022 21:49

I have lichens, sounds lichens sclerosis , there's a great, supportive group on FB
I do have some whitening, but mostly sore, itchy and red
Use an emollient to wash, no soap or shower gel, and get to your gp and ask for a steroid cream. You need to moisturise with an emollient too, I hope you get sorted op

PopsyPie4 · 02/02/2022 21:49

PS excuse all typos in my last post, fat fingers and half asleep!

foxgoosefinch · 02/02/2022 21:54

OK, don't wash in hibiscrub. Water or emollient diprobase only. Switch to unfragranced products only for laundry etc. - simple or surcare.

Are you breastfeeding? If so you may have vaginal/vulval atrophy, which is thinning and redness/tendency to breaking of the vulval and vaginal skin due to low oestrogen. I had this and no GP ever mentioned it to me - it took me ages to realise what was causing it. Ask your GP about that and for oestrogen cream to treat it topically. When you stop bf it should go back to normal.

Ask to be referred to a consultant "vulva clinic" or vulval dermatology at your local hospital if it doesn't resolve. Good luck OP!

foxgoosefinch · 02/02/2022 22:01

--NB Oh and definitely don't use Dettol or any salts! They will make it more irritated. I found any fragrance made things ten times worse - also disposable sanitary pads: get period pants and wash them in surcare, or some of the fragrance free cotton organic disposable pads.

Just reread your OP and saw that you are having lengthening cycles - definitely may be vulval skin atrophy due to low oestrogen if you have had a baby / are starting perimenopause -- especially if you are BF as well. Mine caused thinning red and sore skin and skin tearing particularly around the perineum so I would definitely ask GP to prescribe topical oestrogen cream to see if that helps.

Hairyhat · 02/02/2022 22:31

For my piles I used fill with water and freeze the fingers of plastic gloves (tied off so no water escaped when they melted) and shove one up my bum. Very unglamorous but I got instant relief.