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Atrophy and pelvic discomfort with Lichens Sclerosus

Posted , 16 users are following.

ElleF
ElleF

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.

3 likes, 54 replies

54 Replies

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  • karen41728
    karen41728 ElleF

    Posted

    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

    • ElleF
      ElleF karen41728

      Posted

      What part sounds like lichens planus?

      I have had abnormal smears in my younger days.

       

    • karen41728
      karen41728 ElleF

      Posted

      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 
    • ElleF
      ElleF karen41728

      Posted

      Thank-you! I didn't have any treatement for the abnormal smears. I stopped having them in my late 30's.

      Yes I have white patched in my mouth. I am quite convinced it is LP in my mouth, however I am waiting for a referral to a specialist for confirmation. I also think I may have it vaginally as well. Again, waiting for next appointment which is coming up soon. I wish it was as quick and easy to see a medical professional as it is to book a pedicure!

       

    • karen41728
      karen41728 ElleF

      Posted

      Hi Elle

      Are your smears uncomfortable now and did they just monitor the abnormal ones when you were younger or did you have colposcopy

    • ElleF
      ElleF karen41728

      Posted

      Not uncomfortable now. I had a colposcopy when I was in my mid-late twenties. Annual smears that always came back a bit abnormal until sometime in my late 30's.
  • joni56116
    joni56116 ElleF

    Posted

    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. 
  • joni56116
    joni56116 ElleF

    Posted

    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. 

    • ElleF
      ElleF joni56116

      Posted

      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.

  • ChrissyC
    ChrissyC ElleF

    Posted

    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 smile 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.

    • ElleF
      ElleF ChrissyC

      Posted

      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.

    • Chrisy
      Chrisy ChrissyC

      Posted

      I know what you mean too Chrissy.  I have only felt able to join in conversations about treatment of Ls but not the resulting effect on myself too deeply.  I have always wondered about fusion.  I too have disappeared and no longer have either clitorus or labia.  I could not describe my symptoms as fusion.  I also have pains down low in my Abdomen.  I have had colonoscopy and had a total hysterectomy in fear of the pains I had, and abnormal smears.  The only problem they have found was endometriosis but that would not account for the pain I have now following the hysterectomy.  I have no problems with my bowels inside so all they can think is it is lesions on the outside of my bowels caused by the endometriosis.  I hope you will begin to feel more able to discuss your worries on here now that you know there are many of us probably with similar issues.  We are not all the same and there are many different symptoms of this dreadful condition.

      I hope I never caused you to feel alone.  That is not the intention of Forums like this.  Quite the opposite.  This is a place we should all be able to visit to find friendship.

    • ChrissyC
      ChrissyC Chrisy

      Posted

      No you haven't Chrisy, no one has really. I only meant I couldn't join in because I didn't share the symptoms like itching and I couldn't find anyone else who quite shared MY symptoms. So. You say the clitoris CAN disappear entirely - I was hoping not. Heck! That's got to me!
    • ChrissyC
      ChrissyC

      Posted

      I knew it could fuse over but still BE there. But to disappear completely through atrophy has been my major worry. Again I say HECK!
    • ElleF
      ElleF ChrissyC

      Posted

      Chrissy, further to the 'scraggy' labia majora, I recently started on Vagifem. I cannot believe the difference in 9 days! I've actually found it helpful; plumping up it completely changes the structure and makes the LS changes appear less drastic. I feel less ravaged by LS. As things look more like 'the youthful days' I am able to see in another light what the changes are and they don't seem to be as horrific as they looked earlier. 

       

    • ChrissyC
      ChrissyC ElleF

      Posted

      Thanks for the update Elle, I appreciate it.
    • Chrisy
      Chrisy ChrissyC

      Posted

      Sorry, it just goes to show how we misinterpret others writing.  Well mine seems to have disappeared.  I do not know if it is covered over but it has felt and appeared to just disappear, as another member on here said it is like looking at a Barbie doll.  There is no shape at all just a minute hole for the urethra on a totally smooth area. No lips at all.   I must say I gave up worrying about all this when the dermatologist said that I had no active ls anymore.  I find it easier to keep clean now too.  My husband and I gave up on our intimate side of life but have a very close relationship in all other ways. I do not worry and none of us should.  Just treat and observe.  Don't ignore your concerns see someone when you are worried.
    • karen41728
      karen41728 Chrisy

      Posted

      I know how you feel Chrissy just feel like my body is ageing so fast I'm really depressed lately, good to chat though on here it really helps Xx
    • ChrissyC
      ChrissyC Chrisy

      Posted

      You have nothing to be sorry for at all that I can see. No problem Chrisy! 
    • monica_22641
      monica_22641 ElleF

      Posted

      Hello ElleF, I know it was a couple of years ago but this is new to me. I've been diagnosed with LP in mouth. I think it's in my inner labia and fear that it's in my eurethra as well as this is the most painful symptom right now. It started as total pelvic involvement and I thought it was pudendal nerve. That all calmed down but I feel like I have to pee bad with no UTI. I am going to see doctor but I was wondering if you had any resolution to the lower pelvis discomfort and pee feeling problem.

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