Narrowing vagina & Lichen sclerosus help

[amnidyaa]

Hi all

I just wanted to share my journey incase it helped anyone....

March 2022 I started experiencing terrible itching at night all around the labia which I just couldn't help scratching. At this time I didn't really have sex due to being sore from the itching/scratching.

A month or 2 later I went for a smear test, I'm 38 so I've had many of these. But as soon as the speculum was inserted it felt like my insides were ripping apart. A few week later I tried having sex but it was like there was a block where my husband just couldn't get his penis in at all. Went to the g.p who said its vaginismus and Im just tensing up because Im scared, she did an exam where she inserted a finger and said she could feel me clamping up. I then went to a gynecologist for an endometrial ablation for unrelated issues and while I was there explained what happened and she said I just need to relax and breathe etc. No other help or resources offered.

Fast forward a year and a half to early August 2023. I have tried the g.p again in this time but keep getting fobbed off with "vaginismus" and being told I can try counselling even though I insisted its a physical issue not a mental one. I am still unable to have have sex and my labia keeps getting cuts. I went back to the g.p and insisted on another referral to a different gynecologist.

I attended my gynecologist appointment at the end of August and the gynecologist gave me my first thorough exam and diagnosed Lichen Sclerosus and told me that my vagina has indeed narrowed due to the condition. I was prescribed dermovate to use for 3 months and was recommended dilator treatment. I started dilating with femmax dialators but found they were difficult to insert due to the blunt tip so switched to amielle comfort dilators.

I have been following this treatment for a month and it has changed my life. The itching and cuts have disappeared. And I am able to have pain free sex for the first time in 1.5 years.

I just wanted to share because I was fobbed off so many times until I found a gynecologist who actually cared enough to listen. He did agree that there was secondary vaginismus but he said the clamping down was due to the pain of insertion because of the soreness, cuts and narrowed vagina.

Again I just wanted to share incase it helps even 1 person. And anyone struggling with dilatora should definitely look at amielle comfort dilators.

@amnidyaa Thanks for your good news story. The internet is full of doom and gloom around LS. Did you have a biopsy to confirm your diagnosis? Did you have the typical white patches?

Hi,

I had white a white patch around the clitorus and a white patch at the entrance to the vagina which is also where the skin was thickened and there was narrowing around the entrance. I didnt have a biopsy. The gyno said if in 3 months it hasnt cleared then he will do a biopsy. The goal is for him to be able to do a smear in 3 months which he was unable to do at my last appointment.

I had already purchased femmax dilators after looking online but when I tried using the 2nd size I was getting papercuts around the entrance. The gyno explained that the dermovate should help take down the inflammation and help the skin heal and since starting the dermovate I havent cut. I was able to go up to size 3 with the femmax dilators within 1.5 weeks of using dermovate. I just couldn't insert size 4 off the femmax, it just kept hitting a wall. I ordered amielle and it did take a few tries but the size 4 amielle goes in fine now. They are the same size but amielle is less blunt so easier to insert. Im hopeful that I'll be able to have a smear at my next appointment in 2 months.

I dilate dialy and use Replens every 3 days too, I find that helps alot with the dilators.

Im happy to answer any questions 😊

Hi, I have LS and was diagnosed last year. I had been experiencing awful itching and dryness (what I thought was persistent thrush). Paper cuts and stinging, especially sore around the vagina entrance. Luckily my GP spotted that my vulva looked very smooth, pale and shiny and referred me to the vulva clinic at Royal Free. I was diagnosed with LS there and then, no biopsy. Mine was caught just in time as my minor labia (or whatever it's called) has shrunk quite a lot but had no scarring over clitoris or major labia. I use a steroid cream that has an anti-fungal element too, as I found using normal clob (or any moisturiser) was causing a flare/thrush. It's clobetasol with added neomycin and nystatin. Sex is perfectly enjoyable provided I use lots of water-based lube - and I mean loads. Drinking also makes my symptoms worse so I've had to cut back on the wine. No soap or overly-scented products. Consultant said I should also try to relax my pelvic floor muscles as the whole area is very tense (no doubt on auto-immune 'high alert' mode) but the breathing exercises and massages felt like a lot to integrate into daily life so I've left that. On the whole it's fairly easy to manage, felt a bit sad when I was first diagnosed but have got used to it now. I'm quite gung-ho with my steroid cream but I've found it's the only thing that helps.

@amnidyaa so glad it's all helping you. How long did the clob take to make a difference to your symptoms?

@TreesBridge So pleased you've found a resolution. How long did your symptoms take to improve?

@PrincessProcrastinate the clob took about 3 weeks to work, Im down to twice a week with it now and I havent had much of a flare up. Although using tampona does irritate the entrance of the vagina and the string irritate the skin a little. I tried pads but that was a huge mistake and caused a flare up so havent used them again.

I found that the dermovate mixed with daily dilating really helped me the most. But things are alot more stretchy in the labia since using the dermovate

@amnidyaa is that 3 weeks for the itchiness and soreness to disappear? So frustrating!

Interesting about the sanitary towels. Never had a problem with those. Do you mean when using clob?
I find any moisture down there is irritating from any creams. I find it best when I've just had a shower only with water and I've dried off. Much less irritating.

For me it was about a week for the itching and a further 3 weeks for the soreness and cuts to fully go away. The white patches also disappeared and I never itch now.

But for a over a year without a diagnosis I just itched>scratched>scarred>repeat. It was a nightmare

Thanks. Were u using the steroid once a day or twice a day initially?

Did you ever get tingling as a symptom? Like a buzzing sensation in your skin? That for me has subsided a bit but itchiness still there

I didnt have a tingling or buzzing. I used it every night for 1 month, every other night for the second month and now just twice a week.

Your story sounds almost identical to mine! I’ve been tearing with sex for years and was prescribed dilators but told not LS. The dilators work great most of the time. I’ve now started to develop a white patch down the side of my clitoris. I’ve got a derm appointment in December but I’m hoping I don’t get fobbed off because I’ve thought it was LS all along. Have your white patches completely disappeared now and were they at the side of your clitoris? Do you have any particular technique with using the steroid, or just put it straight on?

Hi,

My white patches were on the front on the clitorus and they have mostly disappeared now. They're not the same colour as the non affected skin but definitely much less visible. I just make sure I rub the clob in for a few minutes thoroughly.

Hope it all goes well for you at your derm appointment xx

Thank you! Sorry, I just have one more question. How long did you have the white patches before you started the steroid treatment?

Im not sure how long I had the patches, I had the itching and narrowing for a year and a half but everything was so sore and cut up I didnt want to take a mirror to it

Hi i got diagnosed to months ago. Find dermovate causes me to itch and burn more? No idea what moisturiser to use in between

Lsmummy- I’ve only ever felt burning when I’ve had thrush alongside LS. Generally the steroid always calms things down fairly quickly not makes it feel worse but I’ve had a battle with recurrent thrush since September and have had burning like you described.

Maybe an anti fungal mixed in like another poster mentioned might be the way forward??

It’s interesting how many younger women are being diagnosed with this now. I was diagnosed in 2018 at age 34. I’ve had good/stable/remission periods but also flare ups. Horse riding/bike riding seems to cause too much trauma and cause flares so I’ve reluctantly given up.

I’m using Yes VM alongside steroid at the moment with pretty good outcomes.

Thanks for sharing, it’s easy to go down the dark rabbit hole with this condition. On bad days I find myself hating random women who are walking about happily with their healthy labias 😂.

Ps I found this website pretty helpful:

https://lssupportnetwork.org/

OP so glad you got a diagnosis and are back on track. I've had LS for what feels like forever and have had multiple courses of dermovate treatment. My problem is I can be fine but literally one day wearing tights or leggings and I am back to square one. It is so depressing as I love to wear a dress to work or leggings and a long top or even slightly tight jeans/trousers but I know that it's going to end up with pain and discomfort. I've taken to using vaseline which does help a bit if I want to wear those things, but it's a horrible condition.

Hi everyone,

Just wanted to share an update....

I had my follow up appointment today and managed a smear test for the first time since my diagnosis. The gynecologist said that my patches have almost disappeared and the definition is back in my labia and clitorus. I was so happy I could cry 😢

I've been using dermovate twice weekly and vaseline in between those days.

I did mention that I had an ablation about a year ago and my periods have gradually gotten back to what they were pre-ablation and this causes flare ups in the lichen sclerosus so I have a hysteroscopy booked to see if Im eligible for a repeat ablation.

Have stumbled across this thread and it’s like reading something about me! At 35 I was diagnosed with LS (about a year after my second child) though the GP did a terrible job at actually telling me how to control my symptoms! A self-referral to the sexual health clinic another year later and I was put on dermovate along with using an emollient cream for washing, so no shower gels. I’ve also had excruciating sex which I thought was linked to LS but today through an unrelated gynae appointment have discovered that I was given an ‘extra stitch’ following the birth of my second child so at least I will get that issue fixed but still have LS. I find my symptoms manageable but I wasn’t impressed by the GP when I went for more steroid cream and in her own words “are you sure you have this condition? It’s what old ladies get!” Geez, thanks for making me more self-conscious about this condition! I’m probably still in denial about having it and wish I didn’t have it to be honest. The gynae today has suggested I test my diet for 6 weeks eating natural foods only, no ultra processed foods and see if this has any effect. Since this is an auto immune disease it can be something so small in our diet causing these effects. I have no idea if it’ll work but it’s worth a try. Previous to this diagnosis I have been 100% healthy so it’s come out of the blue. I also find when I use pads for my periods it is causing major flare ups; really sore and like nappy rash so I have to smother the area in sudocream! It’s just not dignified sometimes. However, finding this post has helped enormously so thank you everyone for sharing as no one speaks about it. I’m not the only young (yes, we’re young!) woman with this condition.

It’s interesting how many younger women are being diagnosed with this. I am following an anti inflammatory diet and I have found a massive improvement. Im currently managing with just yes vaginal moisturiser as the long term use of dermovate gave me recurring thrush. My dermatologist is monitoring me more frequently but so far so good. No flare ups.

I just wanted to ask what vulva ulcers look like as i can’t tell if they are or not

Hi Whats an ablation?

Ablation is a surgery that destroys the lining of the uterus, I had the novasure procedure.