Itchy vagina condition ruining sex life and worried about my marriage

[ncpostingabout]

I've had this on and off for years and years.

I was told it's recurring thrush but this week has been horrendous and I figured it just cannot still be thrush these years later.

So I googled and looks like it could be a rare condition called lichen sclerosus which causes pain burning and itching around genitals. Apparently a lifelong condition - I'm gutted.

Does anyone have this or anything similar? Please share experiences but it's really impacting sex life.

DH wants sex, I tell him it's painful but then he thinks if it's gentle it'll be ok and I end up feeling incredibly guilty.

Please I can do without LTB this is the real world and facing reality my sex life is affected like this is very upsetting - for both of us.

Any advice, not sure why I'm posting I guess for traffic to ask if anyone has similar experience or really how I should handle this from a relationship perspective.

@sociallydistained can I ask how long you used the cream before getting it under control?

I suffered on for months before finally going to the Drs to have my fears confirmed. I’ve been through the 3 month cycle of cream -daily, every other day, twice a week- only for it to flare up a couple of weeks after stopping. I restarted with the cream after another couple of weeks of praying it would settle but it seemed to make the area affected larger somehow and after another month I was worried about skin thinning. I know I really need to go back but can’t bear to atm, we have other issues to deal with.

sorry op, jumping on your thread.
Re your issue, it does affect our sex life. It’s hard to feel like sex or any kind of intimacy when you’re in pain! DH tries to be patient and understanding but does occasionally ask then get his head bitten off for doing so. It is miserable.

As soon as I saw your thread title I said in my head, ‘I bet she has lichen sclerosus’.

I have it too, I was always told it was recurring thrush. I ended up getting a gynae referral after I started to get small cysts down below during a particularly bad flare up. I was so depressed with it. Dh and I have a pretty active sex life and it had just dwindled due to this condition as the pain and other symptoms are awful and makes you feel pretty rundown constantly.

First appointment with the gynae, dh and I went together, spoke about all symptoms and how down I was. She said she already knew what it was after we’d told her everything but obviously had a look to confirm and yep, it was lichen sclerosus.

She was amazing. She told me to only wear comfortable, cotton undies. No tight clothing. No perfumed soaps, shower gels etc (I didn’t anyway as I have terribly sensitive skin) and she prescribed me diprobase to clean myself with which to be fair I’ve never really figured out how that works so I don’t do that) I use the brand simple soap bars to wash. And she prescribed the holy grail ‘Dermovate’ cream!!!! This is what you need. She said to use the cream every morning and every night for two weeks then only every night for another two weeks and then as and when needed. IT WAS A MIRACLE. Honestly not exaggerating. We went back to see her around 5/6 weeks after the initial appointment and she said I was practically beaming! And I was, I felt so much better physically, mentally and was so much happier!

Our sex life returned and has been fine ever since, I wear whatever I want now too. I just wore loose clothing while I got it all under control. I still stick to comfortable cotton underwear as not doing so can cause a flare up. I also get some symptoms around my cycle also. Those bloody scented pads that are around nowadays are a nightmare, stay away from them!

Whenever I feel my symptoms starting up I go straight for my cream and use it for a few days and I’m right as rain.

That gynae appointment changed my
life OP! Please go to the doctors and insist on a referral and tell them you think it is lichen sclerosus. I hope you can get the same help I did. Any other questions, please shout, happy to help. I know exactly how you feel right now.

If you think you might have LS a biopsy can test for this. You might need tests to rule other things out too - thrush (depending on which strain of candida might be resistant to treatments given), STIs, BV or vaginal atrophy due to (peri) menopause or other things like breastfeeding (due to hormonal changes) or medications (eg SSRIs)

A sexual health clinic can be the best place to start. A steroid ointment eg Dermovate can calm the inflammation causing the itching and is the standard treatment for LS if this is the cause. For some women LS is missed and for others it is misdiagnosed.

An OTC emollient ointment like Epaderm or Hydromol can help soothe the itching and prevent friction.

@CantbelieveimaskingthisonMN I can't really remember but it couldn't have been too long. There was just a point where it wasn't a problem anymore. This time though I was on hydrocortisone cream for a good month with no change and I've been on Demovate for 2 weeks now with little change so it may be different for me now I'm older (36 now) I really hope not but I have no itching now and the only real pain I have is at the very top of the vagina so I may have it lighter than others. However, before I was on any cream I was itching loads so it's at least sorted that. OP mentions not being able to wear underwear etc which sounds really bad. You definitely need to start some treatment asap and it'll bring some relief. In the meantime with symptoms this bad I would say no sex.

Im going through sudden, medically induced menopause due to cancer risk ( so no HRT) i also have stage 4 endometriosis. PIV sex is impossible as its so painful. My husband knows this, we are intimate just not in that way. He has a very high sex drive but would never ever guilt me into having sex while in pain.
Im sorry OP but your husband is a monster. Co ercing you to have sex( by guilt tripping you) and then going ahead even though you are in agony, is rape. Theres no grey area here, its black and white. You need to contact Womens Aid and leave. Im so sorry this is happening to you.

I think I have graves too although never confirmed as GOs have never successfully diagnosed me I also believe my autoimmunity is linked to fertility I also have scalp violet spots apparently this is lichen plantus???! I just need a really good doctor to help me

@TruJay I would say my gyne appointment was worth it too as you say.

@ILoveaSunflower I found a prescription for hydrocortisone I sued for something else I may use that until I can get seen

@ncpostingabout yes I would use that. The one prescribed to me at least alleviated itching

@IWishIWasABaller I know, that part really upsets me. I just do not understand why he wants sex so badly but I also don't want a divorce or to be cheated on. I know what you're saying but I feel like I'm being pragmatic this way. It's horrible situation and on top of it we are also struggling with fertility so I guess I'm just scared of the future x

Sorry to hear you're dealing with this. I have lichen sclerosus too - and have a steroid cream from the Dr that really helps.
Apparently autoimmune diseases love company ( I'm also Coeliac) which is just great!
Hope you get it sorted soon x

@IWishIWasABaller no children we have tried and failed - and ovulation peak days a lot of the time I do t look forward to it because of this stupid problem I have

Sorry, meant to add that LS usually affects the vulva rather than the vagina. There is also Lichen Planus to consider.

I have lichen planus not LS but it was miserable with the little cuts and ulcers. I was single so can’t answer about the marriage issues but he shouldn’t be pressuring you. Can you afford to go private? I would research someone who specialises in LS in your area, it might be gyne or dermatology. They should be able to see you privately and then ask your GP to prescribe anything you need.

@LadyGardenersQuestionTime mid thirties and yes I know my DH is really really just not understanding - we are having a few issues at the minute this is one of them, infertility another...

I had similar for nearly a year and I sympathise.

What treated mine was Replens vaginal moisturiser. You insert some every morning for a week. You can buy it or your doctor can prescribe it. It doesn't sound like it would work, and I was very sceptical about it, but it did work.

Also, using really hot water with the shower spray pointed at the sore area seemed to make it clear up more quickly.

Finally - using Dermol (which you can buy or have prescribed) to wash the vulval area seems to keep it at bay. I also use the Replens (just once or twice) at the first sign of trouble again.

@CantbelieveimaskingthisonMN it's ok your post helped carry on!!

I am surprised there seems to be quite a few people that have this - I've never heard of it before I guess one of those women problems that just get ignored or is taboo like many of the things we go through 😔

@TruJay thank you so much for your post ❤️

It's given me hope - I might buy some dermovate online and see what happens.

This condition is truly truly awful and I've lived with it now for over 15 years I believe. I have just got so used to it that I've just dealt with It and pushed through the pain but this week got too bad and really made me think about my relationship and that's what made me google as I figured this can't be right I must have just got used to thinking it's normal but it isn't.

Also, sorry for TMI but I also get a grey build up on the vagina walls after a few hours - does anyone else get this? It's almost furry in texture. Sorry for TMI

Would an STI clinic be able to help? (I know it's not an STI) but they might have more specific information/ help

Sounds miserable OP

Haven't RTFT but have you been tested for diabetes OP? I'm just thinking, if it's been worse the week after Xmas (when a lot of us have a higher sugar intake) maybe it's worth being tested if you haven't already.

@Redannie118 please be kind, my husband isn't raping me I think that's a bit harsh. I'm sorry to hear you're suffering too but I do think a bit insensitive to call this rape.

@BunnyMum2000 yes I've read, I am absolutely petrified of developing vitiligo which is also a linked condition. Truly petrified of that.

@over50andfab yes I think it might be lichen planus I have both because I have violet patches in the scalp lesions I always wandered what they are but again just learned to live within

Dermovate is a prescription only med and is one of the strongest steroids there is. It really would be best to get examined and tests if needed done first. SH clinics are really well set up to do this. Grey build up can be indicative of something else and as mentioned itching can be caused by a few things - also depends if it is actually vulval (or peri anal) or vaginal.

@lemmein isn't diabetes fatal if not controlled though? I defo wouldn't have type 2 as I eat pretty clean