Atrophy and pelvic discomfort with Lichens Sclerosus

Women's health
1

I'm writing because I have some symptoms that don't seem to come up on here so I'm not sure if they are uncommon LS symptoms or something else. I'd like to do some research but am not sure where to turn. I believe self education is important but there is that balance between exhaustive reading of everything and walking away from the research to try have some time where this disorder isn't consuming all my time and energy, because as you know, we aren't supposed to get stressed out. I want to put this out to this amazing group to see if you can send me in a direction to help narrow down my research instead of spending hours trying to sort through everything out there. The doctors only have what I tell the to go on and what they see and I'm getting some answers that are inconclusive. To be fair I am early in my treatment and have another referral to see in about a month so we simply may not be there.

I am recently diagnosed and now am quite sure that I have had this all my adult life. I thought I was well educated on sexual health matters, which is why I was surprised (and angry) at this diagnosis this late. Generally it showed up as splitting in my 20's to which I was told "don't have such active sex" and then would go away for years at a time. When I started perimenopause in full force (47-50) is when symptoms started. I had itching and a tingling in my vulva. I get oral cold sores and the tingling I feel on my vulva is similar to tingling that signals a cold sore is on its way. Generally the itching wasn't terrible, instead annoying. I had an irritation (tingling) focused on my clitoris which made me feel like I was permanently aroused. Diagnosis: "it's hormones" and "you've left a sexless partnership you are simply rediscovering sex". (A lot of truth to the latter!) I had a few years of high sexual activity while things were atrophying. I'm now postmenopausal at 51.

My labia minora were always small and now are non existent. I believe my clitoris is disappearing. Not being covered over, simply shrinking. Atrophying. Where other LS patients have skin growth that closes over their vaginal opening I cannot see how that would happen to me. My labia majora seem to be receding. I have recently been given estrogen which may restore some plump and perhaps this receding I see is simply 'deflated' labia. I'm not too worked up about this. What is there, is what I've got.

Since starting the steroid creme, my skin is returning to normal appearance. I had finally calmed my mind down from my initial reaction and worry that my clitoris would melt away overnight. Then last weekend, I attempted to have intercourse which flared everything up. For the first time I had plaques. It was terrible burning, papercut like splits on my clitoris. I believe it's calming down so quickly because of the information I've learned and implemented from this forum. Thank-you all!

The other issue I have is a strange feeling in my pelvis. It's not cramping, but rather like an irritation.  From what I know of lichens sclerosus this makes no sense (but I don't know everything!)  I have gotten it in my mind that it is the irritation that I feel on my vulva when things are active, simply inside my pelvis. I have recently had a pelvic ultrasound which I believe was normal. I've since fired the doctor who sent me there (for many reasons but not the ultrasound) and my new doc is getting the results so hopefully soon I will know something.

I also have self diagnosed lichens planus inside my mouth. I'm attempting to get a diagnosis on this.

So my questions to you are:

- atrophy. Is this something that is separate from lichens slcerosus or something that just not a lot of people get? Treatment tips specific to atrophy?

- the pelvic tingling. Anyone else have this? Thoughts on what to research?

And thanks again for all your contributions and the things I've picked up from you.

2

Hi Elle

To me it sounds like lichen planus have you ever had any abnormal cervical smears, I have lichen planus and suffer with itchiness and burning that drives me crazy, my dentist diagnosed mine with a biopsy

3

I can't answer your questions with great confidence because I have similar questions. I have read many, many accounts of people with LS having problems with "fusion."  But I think the word "atrophy" better describes what has happened to my labia minora than the word "fusion". I have read many accounts of people having much success with the reversal of fusion by using clob (potent steroid ointment), topical estrogen and topical testosterone. I am currently on this regimen of meds. But I think the word " "atrophy" better describes my labia minora than the word "fusion" that I more often here on the forums. 

4

What part sounds like lichens planus?

I have had abnormal smears in my younger days.

 

5

Did you have treatment for your abnormal smears, I speak with a few ladies on here who have had treatment years ago for abnormal smears and now suffer with LP which does affect the vulva and mouth, you should get a proper diagnosis to see , I hope it isn't LP  I really don't think there's anything  that can cure it, it's an autoimunne disease. Do you have any white patches in your mouth inside cheeks or tongue, I hope things go well 

6

I am so very sorry but I was cutting/pasting a sentence when I accidentally sent my reply that did not make sense! Basically I was trying to say that I think "atrophy" better describes what I see happening to me than the more commonly used word "fusion". But I really don't know how the appearance of "atrophy" and "fusion" differ and would love to see pictures. I have read many accounts of improvement in fusion with the meds I mentioned.  I have read (somewhere???) that atrophy, rather that fusion, can also occur, and that the meds will not help with reversible of avtual atrophy.

My physician is not much help. It appears that he doesn't know much more than I do. Very frustrating.

I  diagnosed several years ago by my dermatologist with lichen planus on my scalp. I had the one break out which was resolved. I have had no other incidences with LP. A few  months ago I was diagnosed with lichen sclerosus by my GYN. I, too, think I have had it much longer. My  GYN has not done an actual biopsy because he says my symptoms are classic LS. He says what I have on my labia area is NOT lichen planus, but LS. 

It appears that my doctor may not know much more about this condition than I do. And if it weren't for things like this forum I would know NOTHING. Thankful for all who post here. 

I have not experienced pelvic pain like you mention. As I understand it, when lichen planus appears in the genital area, it tends to occur higher in the vagina, whereas lichen sclerosus affects the labia area rather than the actual vagina. 

I very much empathize with your frustrations. 

7

Hello Elle and Joni. I am very pleased to hear from you both as for a couple of years on here I have been trying to connect with others where atrophy rather than fusion has been the key concern, to no avail. I have LS but not LP. Started round about the menopause. I am asymptomatic in that I don't itch. That's by the by, some people are. My inner labia disappeared at an alarming rate through atrophy not fusion. They were just normal sized really before it all but now nothing left at all. And now my clitoris is also shrinking like you say Elle, not covering over but actually shrinking. I've not been able to find reassurance that it won't disappear completely so I hope you're right Elle. The thought of that is too weird! I can't say that I've noticed my labia majora reducing particularly, they're just getting a bit scraggy like the rest of me Um, maybe I'll have another look.

I get uncomfortable feelings in my lower abdomen quite regularly but not really sure if it relates to what's happening with you Elle. At first I believed they were menopause related where although I didn't have period pains any more nevertheless things were still settling down. A few years down the line now and that's all settled but like many people have mentioned on here we seem to be rather more to prone water infections and I feel I'm rarely free of a low grade discomfort low down in my tummy.

All the time I've been reading contributions on here I've rarely joined in because my atrophy experience seemed different to everyone else and I've felt quite isolated. I'm not of course glad that you are suffering this rotten condition and particular symptoms but I am delighted to come across others I can relate to - you know what I mean I hope.

8

YES, I do know what you mean!

9

I think atrophy is the correct term and fusion just describes it. Bits fusing together so to speak! I consider myself so lucky as I have access to the best care possible. I attend a special clinic at the Mercy hospital in Melbourne. A team work on this including both gynaecologists and dermatologists. They see me two or three times a year and I have been going there for ten years. Hence I believe it is vital that everyone seeks out quality care with experienced specialists who specialise in LS and vulva conditions. Anyone else is just guessing and know as much as we do who suffer with it. I have complete confidence in my care. I wish for others to be as fortunate as I am and receive this necessary help.

10

Elle, up to the part about pelvic discomfort, every bit of your story matches mine. What happened when you recently had intercourse is exactly what happened when I tried, once in the two years I've been treated after a lifetime of tearing, pain, 'yeast infections' that were really LS flares, etc. Going forward, I'm afraid that if I want to have sex I'm going to have to make do with some sort of zero friction creative solution. I hear there are very small vibrators that our guy could use on our clitorus while entering gently and then staying still. He'll have to get his friction some other way. This sort of thinking made me angry before, but now I realize it was because I was in a bad relationship (now over).

11

Hi Elle,

Thanks for the detailed post. I had to reply as the pelvic discomfort and atrophy resonates with me. I'm 25 and was diagnosed in January. Although I believe I had LS for a while. When I say a while I have no idea if I had it as early as childhood or whether it appeared in my teenage years and then becoming sexually active at 19 just made things worse. The last 2 years I've noticed sex is more difficult (I feel very very tight) and I tear at the fourchette.

I have atrophy and feel as though my vulva looks deflated. I use topical estrogen once a day but I don't know if it's doing anything.

About 3-4 months before I was diagnosed I remember experiencing pelvic discomfort like yourself. However mine felt more like cramps. I actually thought at the time I had endometriosis. But I think the pelvic discomfort can develop secondary to LS. My specialist diagnosed me with pelvic floor myalgia and has referred me to a pelvic physio who I see at the end of this month. She explained that the pelvis, which includes the vulva, is connected by lots of nerve endings and muscles. It's called the pubococcygeus muscle. Google it! If your experiencing pain or discomfort from a skin disease like LS you can develop pelvic dysfunction. It's a secondary problem. The pain can be cramp-like, tingly, burning and stinging and you can feel it in the lower abdomen or in the vulva. You may be right by saying that the irritation on your vulva might be the cause of the pelvic discomfort.

Maybe you can look into pelvic physiotherapy? Maybe wait till you get your test results back and then take it from there.

12

Hi Joni,

I'm sorry that your doctor doesn't know much. I kept searching until I found a doctor who was familiar with it and moved to her and a GYNE as well.

13

Hi Chrissy,

I completely understood what you meant! So sorry to hear that you have felt alone on the forum.

Well there is a very real possibility that my labia are aging like the rest of me (gasp!) but my doctor seemed to think estrogen might help. If I don't report back as I intend to do, please ask what (if anything) happened.

"Uncomfortable low abdomen". That's it! Nothing enough to stop me in my tracks, but it's there. And it never used to be and so I know that something isn't right. I will keep pursing this. As for infections, when this first began I thought it was the beginning of a UTI infection. I was tested and there was nothing. And then nothing again. I finally gave in to the idea that this was something else. I will continue to pursue this and will also let you know if/when I get some illumination and hopefully positive progress.

14

Hi Morrell, Yes, there are small vibrators that are intended for external use on your clitoris or where ever the vibrations feel good. I suggest that you get one for yourself regardless of whether you have a partner or not and learn how to use it to pleasure yourself without penetration or friction (but lots of lubricant!).

15

Hello Dani, Thank you for your information and suggestions! I will keep at this.

 

16

Hi I'm the same my clitorus seems to be getting smaller and it's something I worry about as in only 45 and still sexually active it bothers me. But I'm in the Perimenapause so I don't know if it's because of LS or menopause. I have tried eustrogen cream didn't do that much so I think I may try vagifem next. Guess we have to just keep trying things x

17

Hi Elle

Atrophy:  Yes this is LS and my outer labia have "deflated" (very good description) and hang like a pair of tights on a washing line and the inner labia have all but disappeared.  So far as I am aware, there isn't any treatment.  Your feeling of "paper cuts" is exactly how I described how I was feeling - mad itchy but painful at the same time.

Pelvic tingling:  not exactly although I think the LS has affected my urethra and when I feel as though I need to pee - I really do need to pee and right away!  This could sometimes be described as a tingling/fuzzy feeling in my pelvic area but soon translates into an urgent need to pee.  From what I have read in medical articles, LS can indeed travel up the ureter.

Do you have any involvement of the anus?  I had this, which was very unpleasant, but it seems to be brought under control by Dermovate.  The whole thing flares up when the weather is hot so I have to apply the Dermovate to all areas twice a week to try and keep it at bay.

18

How on earth do you treat LS if it's inside and up the urethra!? I have LS on the vestibule and around my urethra. As far I'm aware it hasn't traveled up. Yet..

19

How scary is this? That is why I use quite a bit of Advantan fatty ointment in this area to avoid such a catastrophe. 

20

Yes I have some around the anus which is recent and I appears to be brought under contol easily.

There were times when it took me much longer to pee than before and thre would be a tingly feeling. It seems to have gone back to normal (or have I simply become accustomed to the longer time?). I was unclear in my research if LS could affect the urethra or not, however I believe my research said yes, even though my doctor said no.