Atrophy and pelvic discomfort with Lichens Sclerosus

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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.

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  • Posted

    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.
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    • Posted

      Hi Kathleen,

      I've been attending the gyn clinic at the Mercy, in hope of a diagnosis but so far no luck, they are currently treating me for herpes, despite 5 negative tests now, because I showed them pictures of my ulcerating labia, so I'm surprised they have experts there. I'm very frustrated and in pain and really need someone who knows what they're looking at (for a year the docs couldn't see anything so labelled it as vulvodynia). My GP thinks it is lichen sclerosis but could also be lichen planus. Can I ask who are the doctors/clinic you are seeing as I have another app at the mercy next week.

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    • Posted

      You need to be attending the Monday afternoon clinic where you will see several specialists who are dealing with LS  and other vulva conditions. Get your GP to refer you to the Session: MDERM, Gynaecology. It is only on Monday afternoons from 2 pm and will takes months to get into. Ring for an appointment on 8458 4111 as there is a long wait to get in before you get your referral.
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    • Posted

      Kathleen, when you say you are seen by a few specialists do you mean every time you go to the clinic at Mercy more than one person looks at the area? Can I ask are you seen by a dermatologist and do they have urologists/urogynecologists available if need be?

      Im having urethral pain. My gynecologist is of no help regarding this. She even said the urethra looked ok!

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    • Posted

      Sorry I pressed reply without finishing the post... She said it looked ok when it's clearly white.

      I get the sense that you are looked after by "a team" of people. Which I think is great.

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    • Posted

      Hi dani I agree with you my doctors like yours, oh everything's ok when it clearly isn't, I started with lichen planus after having treatment for abnormal smear years ago how about you x
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    • Posted

      Hi Karen,

      I know exactly what you mean. It's very frustrating. I had a biopsy in January which showed LS. I've been on steroid treatment. But that hasn't helped the urethral pain or any of the burning pain and soreness I feel. I have LS on the vestibule and around the urethra. I have daily discomfort to varying degrees.

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    • Posted

      Yes, the first one goes and gets another person to come and look too. One time, I had three specialists visit me. I feel like I am in good hands. You have to go at this time as they are all there then. But you must have an appointment. 
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    • Posted

      Thanks. I am in the friday clinic and seeing them this week so I will get them to switch me over. Hopefully since I'm in the system it won't take so long. Already had to wait months to get in to this one!
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  • Posted

    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).
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    • Posted

      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!).
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  • Posted

    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.

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    • Posted

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

       

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