Reversal of shrinkage/fusing?

Oh dear Julia - I know how you feel - watching a slow train wreck and the worst thing is not being able to stop it. Have you been using clob for set periods during that 6 months? I have just started using it every night again but haven't a clue if that's the right thing to do. I have no other symptoms other than disappearing architecture but that is so frightening to observe. 

Dear Sarb73328, I use the Clobetisol only periodically and apply very intricately on the fusing hood. I cant stand the heat the Clobetisol generates. It's like a sunburn. The hood seem super glued with the clitoris hiding inside it there somewhere. I have taken hot seitz baths and tried to delicately pull back with small success. But I'm using that Clobetisol only on the little white lines as I think that is the fusing. Is this disease some kind of over production of protein? What the heck is that tiny white line that has become my new dissolved labia? Is that going to just keep creeping until I wake one morning and all the female anatomy is dissolved? This is a sad and cruel disease. No one really knows what to do. A little bit of everything we try works but nothing really works.

No one really knows what to do sums it up Julia. I will go back and see my GP but fear she will just say more steroid and that disappearing parts cannot be saved. I suppose I am 'lucky' in that so far I have had no pain, just itching. And no burning from creams either. 

I will try applying steroid intricately also as that sounds like a sensible thing to do to target the exact spot. I am trying to stretch the skin too. Also going to up my oestrogen applications as Beverly suggests. Thanks for your  story - they all help focus the mind and make you feel less alone. 

Beverley - thank you for this reply.  I am not sure whether I should have resumed steroid application  and your experience with oestrogen  helping to plump up was mine too at the beginning of my diagnosis, so perhaps I should up the frequency of that again. I used steroid every night for a month, then every other night for 2 weeks, then twice a week at beginning of this year and everything settled well, so GP suggested using it one week in every 5. Just 3 weeks ago I noticed shrinking and clitoral hood fusing, so started steroid again every night, but so far it just seems to be getting worse and there is little feeling in that area. Am so depressed as I thought I was in remission that would last. 

It's the thought of losing inner labia and clitoris - totally - that scares me. And never being able to enjoy sex again which is something doctors seem to gloss over. This is a deforming disease and mo medic I have met has been able to offer comfort regarding that. LS truly affects your whole wellbeing. 

sarb, I wonder if your steroid was the same potency as mine. Using it every night for months seemed like a lot to me. It seems each woman is given a different protocol.

As I am now using the estrogen cream only twice a week and have stopped using the steroid I tried olive oil, but it didn't seem very effective. Tried Aquaphor today and that makes me feel normal so far. I started feeling slight stabs in the clitoris, perhaps due to dryness. The Aquaphor is like an expensive vaseline.

Dear Sarb- It has been 11 weeks since my diagnosis, all pain and it h gone unless I eat the wrong thing ( sugar or wheat). I did not hv access to Clob until week 6 and only put it on white patches on inner labia, I use aemuaid or coconut oil to keep whole area moisturized. I am 47, still get my period every 28 days, blood tests show plenty of estrogen, on thyroid isdues or other AI diseases, but I do lack testosterone, so ai started a very mild prescription testosterone cream to improve that level. I am taking supplements to balance immune system, altered doet to low- oxalate, no sugar, no wheat ( gluten free is out gor me as too many flours contain nuts or brown rice flour which are too high in oxalates). I bought coconut flour to try a few Paleo bread recipes- I’ll let you guys mnow how they turned out. 

Sadly, between week 6 and week 11, my right labia is almost completely disintegrated ( left one is fine so far) and clit that was throbbing and painful 11 weeks ago has nearly disappeared. I have hardly any sensitivity at all, can hardly find any vestiage of my long last pal ( and I know where to look, unlike hubby), and was only able to bring myself to the smallest of “o’s”, - he doesn’t stand a chance! 😢 I am upset enough about it that I am getting on the waiting list at the best Vulvular specialist here in Houston- Baylor College of Medicine- last time I called there was a 4-5 month wait! But someone needs to find it and bring it back out! This is unacceptable! I do not feel like a woman anymore and though my husband still professes his love and says it could be so much worse, HIS body parts are NOT disappearing!I am using Clob 2x a day to see if it will help, but so far nothing. 😡😡😡😡😡

karen, if you were diagnosed 11 weeks ago why were you not on the clob steroid sooner than week 6? Due to typos I don't understand what you are saying about thyroid. Do you have thyroid issues?

I will be seeing my GP next month and hope to have a more accurate blood sugar test & want to discuss the possibility of thyroid problems as well, though his response is always I'm in good health. Clearly if we have LS we can't be all that healthy. My most recent gyn says the lack of estrogen has caused the AV & LS. I probably have osteopenia again as well. Will have to remind gyn I need that test. Took Fosomax years ago and it was effectivel, but with time things degrade. I used calcium consistently despite reading that it is not effective so have stopped that. I do walk for exercise

Are you going to the Vulva specialist in hopes of having surgery? Have you read anything about what they can do to help with the disappearance of tissue??

Hi Beverly- Sorry abput the tupos, I was passionately writing on my little phone. I had them run every blood test possible to check for any problems with my thyroid or liver, check hormone levels, screen for other autoimmune diseases, check Vit B, D, levels, etc. and all came back NORMAL except tor very low testosterone -2.7. I do not believe Dr. Know what causes LS, mine certainly is not due to lack of Estrogen. The tests were to help figure- out what could be causing my LS. . It may all go back to “ leaky gut” syndrome as I hv had my gall bladder out due to stones and have had two rounds of kidney stones. 

The delay in giving me Clob was due to my Dr. Taking 6 biopsy samples 3 days before she left the practice to open another office 6 weeks later. She left the report which was read to me over the phone, but no treatment advice, prescriptions, follow- up, or specialist was recommended. I left on my family vacation ( already had plane tix) and joined this forum, and used homeopathic remedies until I got into Dr Office 6 weeks later. Would Clob on day 1 hv made a difference? I don't know. There is a chance the testosterone cream will cause my clit to “ grow” and re- emerge from wherever it has gone? Only time will tell. I want to see the Vulvular specialist to grt their opinion on course of treatment and if surgery on clit is a possibility. There are only 4 DR. In  USA that do this surgery. I would like to avoid surgery, but I am 47 and my clit is gone, I hv to do something. 

Feel for you Karen. I also have a wonderfully understanding husband but am still horrified at what is happening to me. Let us all know how you get on with specialist please. I hope there is hope for all of us who are losing our clitorises and sensitivity. I am 65 and in UK and don't know of any specialists in my area but intend to ask my GP for referral at least back to gynae who diagnosed me. 

Beverly, what is AV? Are you in the UK? My prescribed steroid is Betnovate which I don't think is as strong as clob. I will persevere with oestrogen cream for sure. 

AV: Vaginal atrophy...or atrophic vaginitis. It's exactly what it sounds like. Can cause many problems along the way.

I'm in the US. 

karen, did the doctor do those tests at your request? I am due for a physical and called the med ctr to say that I wanted an A1C test for diabetes along with the regular blood panel and was told the doctor had to order that. It's impossible to talk to the doctor. There seem to be more obstructions than not in life when your only trying to be healthy.

I found a very informative site that I tried to post, but the moderator blocked it. Maybe you have already been to it? The words "care down there" are in it. Stupid to have to "hide" the name of a site like a child's game, but...

It does mention surgery.