Atrophy in Lichen Sclerosis

Hi wonderful ladies! I am so very thankful for all of your advice. I am 49 and was diagnosed 6 weeks ago with LS, and like many of you, knew nothing about this awful disease. I live in the United States and couldn't believe that I was not able to find any local resources that could help me understand more about this condition. Your site has been a godsend for someone who was feeling pretty isolated. Before I was diagnosed, I couldn't believe that my "itching" was anything more than a possible yeast infection. However, when i treated it as such, it burned like crazy. Of course I thought I was allergic to the medication, so I asked my doctor for the oral pill (Diflocan) which was no help either since I was treating the wrong ailment. Since the LS diagnosis, I searched the Internet, only to be brought to tears after seeing how terribly disfiguring this could be. I stayed away from any more info. for awhile, as it was too much to think about while going back to work as a teacher. I have been using the Clobestral steroid ointment that was prescribed by my doctor, along with Emu Oil (after reading your helpful posts). I also bought Perrins Cream Complete and Emuaid to have on hand, as backup long term treatments. Staying busy at work took my mind off of it while I continued my medication with a "I won't think about it, but will see how things go after treatment" attitude. My husband of 5 years has been wonderful. He and I had had a very active sex life until the diagnosis. While I did experience bouts of some minor bleeding in the past, overall things had been great. Lately, while I haven't had any itching or bleeding, i have noticed that my clitoral hood seems to be disappearing and very little of my clitoris is visible. I can relate to BlueLady as this has devastated me. Sex is not nearly as enjoyable. My husband is amazingly supportive and says that sex is only one small part of our life together. However, I am not ready to give that part up. =(

As to patterns in our health history, I am not overweight, my thyroid test can back normal (I asked for this test, not my doctor), don't smoke, occasional social drinker, drink lots of diet green tea, no diagnosed IBS though I am affected by certain foods (mostly dairy), have a recent heart ablation due to SVT heart arrythmia, and I normally have low blood pressure. I don't take anything for anxiety, but this diagnosis is making me feel like I may need to start. =)

Thank you for making this girl, as well as many others who have posted, not feel not so isolated. That, by far, is the worst part of this diagnosis.

Hugs to all!

AC

I was diagnosed with LS about a year ago and was very itchy. I was instructed to use a steroid twice a day for a month. I used for about one week as directions stated not to use more than ten days. I have found what I believe to be a very good cure. I have a spoonful of probiotic yogurt every day. I use an estrogen cream once a week and Calendula cream every other night after my shower, washing with Johnson's Baby Bar with added moisture. If I have a flare up of LS, I use the steroid once and the itching goes away. Hope this helps ( Note: the reason for the estrogen is because the steroid works best with estrogen so if you are over menopause, the steroid is recommended)

Thanks, Crissy, for starting this great thread!

The women you've gathered are just the group I've been hoping to find. I identify with kathleen65757 and Hazel1962 – I'm sixty-one.

I've had LS my whole life, though I was only diagnosed a few months ago, after I got an awful abscess right over my long-buried clitoris. I'm glad that happened, so I got referred to a wonderful young ObGyn. I'd been managing to have sex with frequent splitting of my perineum (I've gotten used to that for forty years) – however, the atrophy had really sped up and the bridge across my vagina was tightening it up too much. My (newish) husband had noticed and kept asking me if it hurt, but he didn't realize how long I'd been compartmentalizing pain/pleasure. Now sex is not possible. We tried after the clobetasol and estrogen creams got things cleared up, but I immediately got a raging yeast infection from the small amount of friction, I guess. Not trying that again any time soon.

This sometimes gets me down, but he's very affectionate and understanding. He realizes I've got mega baggage from many years of impatient partners.

I look back now and I believe my clitoris was starting to 'zip' up in my late forties. Then suddenly after menopause it closed almost completely over. Then I was single and celibate for about seven years and was surprised to be able to make love after so long – it was definitely an uphill battle with a couple of not very considerate men.

In my case a big part of atrophy is that I no longer have those body rush orgasms. Not since my late forties. The amount of friction and pressure it would take would tear my flesh!

Now my priority is to do what my ObGyn says and have her monitor me for squamous cell cancer. Fortunately I don't suffer day to day with LS. I've been reading lots of young women's posts about pain and itching and very fast progression. I see now (bitterly) that if I'd been treated when I was young I may not have had the atrophy. I really believe this is yet another marker of our poisoned planet ruining our immune systems.

In case anyone is confused by psoriasis, I've had that all along and the Dr. says there seems to be a relationship, but they're not the same thing.

Looking forward to helping support each other here.

Well! I thought creating a new nickname meant I'd be anonymous, but here's my gmail photo! Just so you girls don't mistake me for brave. I have no idea how to change that profile image.

Hi, after being recently diagnosed with LS I am so pleased to have found this forum.

I am 49 years old, and have had type 1 diabetes for the past 12 years. I had my first episode of thrush 3 years ago and since then have had very regular bouts. When nothing would shift it back in September I went to my GP, was referred to a gyn and he immediately diagnosed LS. I was given cream -ClobaDerm and told to use it daily until my next appointment -which is in a week. On the one hand I am thrilled that the dreadful itching has stopped, but over the last few days I have noticed definite fusion which I have found very upsetting. However, I am not sure if this may be as a result of using the cream

The gyn didn't say much about the condition, but doing research on internet, I have been pleased to find this group, but a bit upset when reading about it being incurable. I will go armed with questions to my next appointment.

Fi

Hi Fiona,

I suspect you've noticed the fusion because you're paying attention now that you have a diagnosis. I was your age when the fusion progressed quickly. I thought I needed to scrub more with soap. I'd had no diagnosis and wasn't using any creams at that time. I'd stopped the corticosteroid cream I'd used for decades on my psoriasis (mostly on my hands and arms and face).

Do discuss the fusion with you gyn, but my thought is, do use the cortisone cream. I'm using it because without it I fear things will progress very quickly.

I have started to watch the amount of sugar I eat. Not a cure, but I do wonder if there's some relation between thrush and LS – sugar is gas on the flames of thrush, so it can't hurt to cut out those chocolate bars.

Hi Everyone,

I posted a while back about the importance of diet in treating the LS that I suffered. I am 38 and had it since my late teens but was only diagnosed a couple of years ago by that time I lost a lot of my lips and basically had a white outer vagina. I experienced an insane amount of itching in all those years between (kept me awake, made me bleed). After being diagnosed I cut down on a massive sugar intake which included huge amounts of fruit. Since then my LS has not resurfaced. No more itching!! The condition has halted. i am not sure if this would work for everyone else but I think its worth a try. I lost heaps of weight and just look and feel better in every regard. I am no expert but I think large amounts of sugar must be toxic and wreak havoc on our bodies, well it certainly did for me anyway. Not sure if it caused it but it definitely fuelled my condition anyway.

Really hope this is of some help. Not trying to diagnose anyone or trying to tell anyone how to live but it really has made my life heaps better. Have not experienced LS symptoms in a year now. I've tried to explain my positive results to my vulva specialist but the medical establishment seems to have zero interest in any treatment but the cream unfortunately.

Good Luck,

Caroline

Hi Caroline,

Although I agree that cutting way down on sugar is an excellent thing to try and it's good for us to do anyway, just in case anyone gets her hopes way up – I had a long spell of no symptoms from about age 39 to 48. Lots of great sex. Then it returned with a vengeance in peri-menopause. I was eating super-healthy and mostly vegetarian.

I can't imagine how my life would have been different if I'd known what was wrong with my vulva. I shake my head thinking about how oblivious I was all my life when LS was well-known and the treatment was found in 1960. No internet when I was 38. That's what's changed, including for doctors.

Can I just ask those who have not had any flare ups or symptoms for a while, do you still maintain with the cortisone maybe once or twice a week to try to prevent ,or do you use only as and when you have a flare up. I was diagnosed 9mths ago but have not had a flare up, I just have got atrophy, ie white area around the urethra, and a skin bridge across the bottom of the vagina and a narrow opening. And I am not sure if I should be using Dermovate to try to prevent any more atrophy and most important to stop skin condition turning into anything suspicious .

i never ever use the cortisone cream. I haven't found it necessary since altering my diet which was a lot more effective for me but sounds like you definitely need it if you have white patches and the condition is progressing. Some doctors reccomend using the cream intensively untill condition is under control then slowly cutting back untill needed for flare ups. You need to use it if you are experiencing symptoms of LS. I think advice slightly varies in UK and Australia with UK advice being to use it lifelong for maintenance and Australian advice is more for flare ups.

Hi Roselee, I too am a bit like you, don't really get any flare up's in the under carriage department, but I do try to still use the Dermovate, Sometimes I completely forget & have gone for a couple of weeks without using it.

I think a little drop can't do much harm a few times a week, I put it on before I go to bed & it has helped to keep things at bay.

I've noticed a lot of comments about cutting out sugar & having a healthy diet can help, I've never been a big sugar person, can't have too many sweet drinks or chocolate etc. I've always been relatively fit & always tried to maintain a healthy diet, so for me, that theory is kind of blown out of the water, as I've never indulged in too much of it, I've always been a savoury lover. I try to cook fresh as much as possible, & do avoid what I call "packet" food, (ready meals).

My inner labia has now all but gone, which i'm finding hard to come to terms with, knowing that the situation is only going to get worse with time.

However i'm very lucky that I don't get the flare ups like some of you girls do, I use cetraben for moisture but do find it's not always very good & I can be left so dry & sore, as I am today unfortunately.

Before I go, I would like to wish you all a great Christmas hopefully symptom free, best wishes, Trace xx

Hi Roseleee,

As Caroline has said, you need to use the cortisone if you have symptoms, including white areas and atrophy. I'm a long-term sufferer undiagnosed and untreated till age 61, so my biggest fear is those skin bridges and that narrowing, not because of sex, which is over for me, but to keep the way to my urethra open. At age 62 I'm a very long way from that being a problem, but it happens bit by bit and I do want to stop the progress.

That said, I'm using the cream every second or third day, based on how uncomfortable I am. Tight pants are intolerable sometimes.

Hint: My favourite around-the-house winter pants are 'professor pants' – men's pleat-front wide-wale corduroy. So loose and comfy!

I also wear loose trousers round the house morrell for comfort. I do use Vagifem, and that has improved my soreness and dryness so I am much more comfortable, and to be honest , I wouldn't even know I had anything wrong apart from painful intercourse, I didn't even know I had atrophy until a routine cystoscopy for recurrent cystitis in Feb, which I am now on a 6 mths course of antibiotics as I have had it for over 3 yrs. Trace if you are using dermovate should that not stop you from getting any worse as this is where I get confused. I am seeing my gyny on the 20th Jan who is not confirming it is lichen yet, but I am convinced it is. Will have lots of questions ready. Hope everyone has a nice Christmas .

I have the same problem have an appointment with gyn tomorrow morning but as far as I know there is no treatment.