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Symptomless LS but loss of parts

Posted , 34 users are following.

ChrissyC
ChrissyC

Is there ANY one else out there who has LS in the way that I do? I've taken part on several threads but have really ended up feeling more alone than ever. I have NO symptoms and I do know how lucky I am not to suffer the way most people do. My inner lips just turned white and despite diagnosis and being given Dermovate they completely disappeared in around 2 years. And now my clitoris is going too. No itching, no fusion or adhesion. It is horrific to have nothing I can do simply watch helplessly as it goes. Has anyone else experienced anything like me? I feel quite the freak and so alone.

4 likes, 156 replies

156 Replies

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  • Hazel1962
    Hazel1962 ChrissyC

    Posted

    Hello everyone,

    Ive had labial adhesions parted twice by my Gynaecologist at the RVI in Newcastle upon Tyne. My clitoris was completely exposed again which was wonderful, unfortunately the skin has fused back together again now but I have the option of surgery again when I want it. She offered to do it by epidural the second time so I did not have to go through general anaesthetic, apparently it was basically just splitting the fused skin apart to expose the clitoris again. Very interesting to hear about the skin being thicker due to LS. I unfortunately do have the itching now and again and have also noticed when I do get a flare up it goes right up between the cheeks of my bum also. I have just started the menopause but have had LS for about 20 years now. 

    Does anyone else have problems with the skin at the entrance to the vagina being very tender and prone to splitting during intercourse?

    • sha1271
      sha1271 Hazel1962

      Posted

      Yes I to have occasional splitting at the vaginal entrance. Watching Dr Goldsteins lecture, he said its very important to keep applying clobetasol to the area after surgery to keep it from fusing again.
    • Hazel1962
      Hazel1962 sha1271

      Posted

      Yes, I was told to use Clobestol but as with others I was wary about skin thinning so probably didn't use enough. I will know better next time in light of this recent info. 

      Best wishes.

    • sha1271
      sha1271 Hazel1962

      Posted

      Yes I just want to cry when I think Ive been misguided in treatment. I know thats the fear with many women so they want to use it less then they should.  I just read on a sight that a good well informed dr will NOT  tell their patients that clobetasol causes thinning of the skin. That is what all mine have told me ugh.
    • Morrell1951
      Morrell1951 Hazel1962

      Posted

      Splitting at the entrance to the vagina has been my lifelong symptom. Seemed even worse after my episiotomy. Having seen Dr. G's presentation on the surgery you had, it sounds like you won't need it done again if you use the Clobetasol as he instructs. Lucky you. I don't normally long for youth, but if I could have had that surgery when I was forty and had the meds to keep it that way... Oh, well, I've had my lifetime share of multiple movings of the earth. I'm happy to be comfortable and unlikely to get cancer.
    • Hazel1962
      Hazel1962 Morrell1951

      Posted

      Unfortunately the labial adhesions are back and that together with the splitting at the entrance means the earth moving moments are on hold. Fortunately my hubby is very understanding but I long for the days where I felt 'normal'. 
    • ChrissyC
      ChrissyC Hazel1962

      Posted

      Yeah I get that. I'm so sorry for your discomforts. Hug!
    • Morrell1951
      Morrell1951 ChrissyC

      Posted

      Hazel, your situation makes me a bit skeptical of Dr. G.'s surgery successes. The study he wants to do next is injections of parts of the patient's fat – one of the two things Dr. Casabona does.
  • Roselee
    Roselee ChrissyC

    Posted

    Hi Chrissy I don't get any symptoms either, I did not know I had anything , I was told after a cystoscopy , after3 yrs of uti, I am post menopause and the Uroligist said I had it as my ureathra was tight. When I was referred to a gyny he wasn't sure but I did have a skin bridge, across the opening ( news to me ) although I was just starting to have painful sex, but I thought that was due to dryness. I also have a pale area around the ureathra nr to opening . The bazaar thing for me is when I stated using Dermovate about a week in my outer lips went much thinner, lost a lot of the plumpness and have shrunk so the inner lips prodrude . I am not sure but I think I maybe getting symptoms in the bum cheeks as I get a tingling there, so started using a little Dermovate there and it seams to make it worse. 
    • ChrissyC
      ChrissyC Roselee

      Posted

      Oh sweetheart! You're the first I've heard say have problems with outer lips. I do know that lots of people have problems with LS in the anal area too if that's what you mean. Have you tried lots of moisturising in addition to your Dermovate?
    • tomsbestfriend
      tomsbestfriend Roselee

      Posted

      Hi Roselee

      When I was diagnosed my outer lips had become very thin and floppy. They were the original size but had not fleshy plumpness at all. Then, after about 4 months of using the oetrogen cream applied topically to them, they plumped back up quite a lot.

    • Roselee
      Roselee ChrissyC

      Posted

      Thank you Chrissy, we live in hope, I wondered if it was all the stretching Iand pulling the lips apart to get. to see where to put the ointment . It happened so quickly they have gone thinner width wise, as well as loosing some of the plumpness so not sure they will plump back but I will try using some estrogen cream topically thanks for the tip tomsbestfriend. Does any one use Vagifem as I also use them 2times a week and have been for a year just not sure how long people use them for as I am not seeing my gyny now for another 12 mths and was wondering if this was ok to use for that long. 
    • suzanne00
      suzanne00 Roselee

      Posted

      Hi Roselee--My understanding is that it's okay to use Vagifem very long-term as it's a very low and local (not systemic) dose of estrogen.  I use that some internally and also bioidenticals on my vulva.  The studies say that the problems are with the synthetics (horse urine) administered in the big study (Women's Initiative Study, I think) to women who were in their 70's and 80's with no prior use of hormones.  The topicals seem much safer and actually good for those tissues.  Lower UTI's, for example.  --Suzanne
    • Morrell1951
      Morrell1951 suzanne00

      Posted

      That's interesting. I was given Premarin cream to insert vaginally (that's horse urine, I think) and it sure was a systemic drug. I sprouted hair, I had cramps at night, I was super-depressed. I ditched that and my gynae was OK with it.

       

    • suzanne00
      suzanne00 Morrell1951

      Posted

      Yes--that may be a higher dose than the Vagifem?  I just started Vagifem and likely won't continue because it's so expensive and such a low dose, but I haven't had any problems with the natural, bioidentical creams, and I do a high enough dose topically that I know that I get a systemic effect (we do testing).  I am very grateful for them as they have preserved my skin quality (whatever LS isn't ravaging currently)!
    • tomsbestfriend
      tomsbestfriend Roselee

      Posted

      Hi Rosalee

      I used to use the vagifem tablems inserted into my vagina double dose and twice a week. This didn't suit me as I got sore breasts and lots of flatulence. So my Dr changed me to Gynest oestrogen cream. The official prescription is to be inserted into vagina, but my Dr has agreed that I should use it applied topically to the LS affeected skin and parts where architecture has been lost. She suggests at least 2 days per week without the Gynest though. This is all in addition to the Dermovate (clobetasol) cream.

    • Roselee
      Roselee tomsbestfriend

      Posted

      I had lots of ITU and dryness so think I need the Vagifem ,and to be honest , I don't think it is causing me any problems so far. but I asked for the gynest too as wanted to put on my affected area, reading all the tips to do so. not sure should use both but I think I am going to use Vagifem once a week and rub the gynest on the vulva once a week too, hope I am doing the right thing. 
    • suedm
      suedm Roselee

      Posted

      Just a thought - have you considered the loss of plumpness is because the inflamation is less because of the steroid treament?
    • Roselee
      Roselee suedm

      Posted

      I don't use anything on the  labia major my pale patch is on the area around the opening nr to the ureathra just below the clit. Unless it was inflamed and I didn't realise. Never really looked at it before lol! 
    • suzanne00
      suzanne00 Roselee

      Posted

      Hi Roselee--You might check with your provider about frequency of treatment.  Your schedule of dosing is a lot less than mine (which is both daily).  Good luck in your treatment!  --Suzanne
    • Roselee
      Roselee suzanne00

      Posted

      Hi Suzanne started with vaginfem every day for two weeks then twice a week continued, I just wanted to add some cream too, but wasn't sure if that would be using too much,I use Dermovate twice a week also. 
    • suzanne00
      suzanne00 Roselee

      Posted

      Hi Roselee--I use natural, bioidentical (compounded) estrogen cream on my vulva, and high enough doses that I get a little systemic effect (I'm 58)--which is what I prefer, because I would like the benefits of lowered heart disease, bone changes, skin changes, vaginal atrophy, and other unpleasant effects that menopause can sometimes bring.  I don't really need the Vagifem in addition, since the cream on my vulva works to keep my vagina healthy, too.  My practitioner asked if I would like to try it anyway since it is such a low dose, but it ended up being $75.00 out of pocket even with my insurance, so I don't know that I'll continue beyond this box.  I also use bioidentical progesterone and testosterone in fairly low doses to help everything work in balance.  I'm very happy with the regimen and most people think that I'm a lot younger than I am (which is in part the hormones, I think).  The study finding estrogen problematic for older menopausal women was with women on synthetics and was poorly designed (there are a lot of critiques of this study and the poorly designed study scared a lot of people unnecessarily).  I have researched this very thoroughly and feel very comfortable with what I am doing.  I have several practitioners who support and monitor my hormone replacement to make sure that the levels stay in low-normal levels.  Again, these are topical creams and avoid a lot of the problems of Premarin and other synthetics.  In answer to your question, I don't think that I'd worry about adding some cream too (it's very helpful on the vulva), but you'll likely want your practition to take blood levels periodically if you are using hormones in close to premenopausal levels.  Good luck!  --Suzanne
    • Roselee
      Roselee suzanne00

      Posted

      Hi Suzanne thank you very much for all that info, I am also 58 and this all started 3 years ago with recurrent uti, after 3 mths of the 1st one I went from normal sex to one of feeling dry and painful sex. Was diagnosed 15 mths ago after a cystoscopy. Thought I sailed through the menopause as had no flushes or sweats, would have swapped them for LS any day .
    • suzanne00
      suzanne00 Roselee

      Posted

      Hi Roselee--This started for me a little over a year ago with painful intercourse.  I did have my first UTI in 30 years a month or so ago--I'm sure related to LS.  Since I'm allergic to five classes of antibiotics so far, I only go on them in life-threatening situations.  I do not want to have recurrent UTI's related to LS, so now that I have my diagnosis (finally) and the Clobetasol, I hope to avoid further UTI's.  Also, I'm taking cranberry extract to help prevent recurrence.  I think that you'll find that the hormones do help the skin to normalize--we want to help plump the dry, atrophied skin from menopause, as well as the LS, to restore vaginal and vulval skin, I think.    
    • Morrell1951
      Morrell1951 suzanne00

      Posted

      Hey, nice photo, Roeslee! It would be so much easier to remember who's who if we all used some sort of image, not necessarily our faces. I have a web site and a unique name and my picture is there, so I'd just be hangin' my troubles out to the community if I used my photo and my first name.
    • Morrell1951
      Morrell1951 Roselee

      Posted

      Sorry, I guess it was Suzanne who had the photo.

      Find a small image you like on the net and right-click it, save it to your computer's desktop.

      Click on your name here. That will take you to your account.

      Then put the mouse over the graphic beside your name. You'll see the word EDIT in a black box over the graphic.

      Use the browse field to find the image on your computer.

      Hope that's clear.

    • suzanne00
      suzanne00 Morrell1951

      Posted

      Yes, I was wondering about the problems of having a picture, too. This photo thing happened because I was developing a website and in the course of signing up I must have agreed to this picture going everywhere.  Yikes.  Do you think that my private discussions here could be linked to my identity and website later?  I do like the idea of our seeing each other, though.  
    • Morrell1951
      Morrell1951 suzanne00

      Posted

      This is why I drew your attention to it. You didn't agree to it, it's Google trying to do what it thinks you'd like. When I first joined up here my Google ID photo popped up. Yikes is right. But no, it'd not like having your full name. Your profile photo isn't searchable. I just want to be able to freely discuss things like marital relations without some local person I talk to about LS finding every word I've written here. It would be nice to see each other, but I'd at least like to get used to particular images with frequent flyers. There seem to be a number of Margarets, Chrissies, Marys, and Suzannes.

      Anyway, I found I was able to replace my default photo with the ferns image I use now, as I described. I forgot to say, hit the upload button at the end.

    • suedm
      suedm Morrell1951

      Posted

      Hi I have just read  your thread about photos, but actually it made me smile when i saw that you noticed many of us were called Margarets Chrissses Mary and Suzanne....MAY BE our names are the underlying cause?????

      My computer whizz son is REALLY adament about what we share on line or with strangers...He has the feeling Big Brother is Very close to us - So do try and keep as anonymous as you can. We are sharing a huge amount of intimate details about ourselves - and the website managers have access to our names and emails. I hope they do not share our information to third parties without our explicit consent

    • suzanne00
      suzanne00 suedm

      Posted

      I agree, Sue!  Much as I'd love to see photos to connect with names here, it's probably not a good idea.  I was very disturbed to see that this one website picked up my picture (when I was creating a personal website) and as Marey said, it went viral!  I think that your son is wise to be protective!  --Suzanne 
    • suedm
      suedm suzanne00

      Posted

      I too have a web address but I would be too easily identified by it so  that way of putting a spread sheet of our info would not be A Good Thing. Computer Whizz son says registering a website address would cost virtually nothing and we could upload anonymous info to it- when i have more time i will look into it- unless there is someone "out there" who has the  time to do so?

       

    • suzanne00
      suzanne00 suedm

      Posted

      Yes, uploading anonymous info is how I "removed" my picture--by substituting my puppy's picture!  These websites don't want to let go of any information, but they will accept different information!  
    • suzanne00
      suzanne00 Morrell1951

      Posted

      Thanks, Morrell--It was your comment that first mobilized me into action to remove the picture! I appreciate what you said. --Suzanne 
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