LS Update- All bloodwork back

Women's health
1

It’s been 9 weeks since my LS diagnosis. Through use of Emuaid Maxx, Emuaid regular, coconut oil, moisture barrier ( aloe vera with Vit A, D. E, when I was really raw, after every pee), and Baking soda in the tub, I have no pain or itching and things are calm. If I get a tingle or throbbing I do put a tiny spot of Clob on that area and rub for  90 seconds. 

I changed my diet, wear cotton undies and use 100% cotton tampons and pads. 

I added the supplements Nancy KB and I talked about and feel like things are in balance. 

Now the bad news: My right labia is almost gone - no adhesion, no fusing, it’s just disintegrating. And my clitoris is almost completely retracted? Hidden? Disappeared? very little feeling there, can’t feel it anymore with fingers-  in 9 weeks!!! 

All my bloodwork came back  and my thyroid is fine, cholesterol is good, no other auto immune issues, Estrogen is great ( still get my period every 28 days),  liver is fine, but I have NO testosterone! This may explain why I am so  exhausted all the time, I hv gained weight though I eat hardly anything, hv some depression/ anxiety ( thought that was due to LS diagnosis), irritability, etc. prescribed a testosterone cream for inner thigh or back of calf. I can’t take pellets or injections since I sing professionally and it can cause your vocal cords to grow and change my voice ( currently high soprano), not taking the chance! 

Glad to hear that I don’t currently have any other auto- immune issues, surprised my thyroid is okay?( I was sure that was causing weight issue), 

Very upset that my clitoris is basically gone ( testosterone may make it come back out), loss of feeling there SUCKS, and not happy that 1 labia is shrinking rapidly and other is still normal? This disease makes NO sense! Ugh! 

But I hv no pain, no itching, I am able to work and function normally, I even wear pants occassionally. 

I hope no more flares! 👍🏻

2

So I  like the good news and that you have everything under control more or less.  This is such an awful disease and so unpredictable every day, at least for me.  My thyroid was checked last week and surprisingly it's fine.  My B-12 was high, so I'm taking it less often, and my D levels I"ll get next week.  I have tingling going on but not insane itching.  I"m assuming the disease is doing it's thing and will leave me wondering what the heck to do.

 

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Hya Karen, so glad you have this horrid disease under control, great news your bloods in range. Have you made any diet changes? Sugar free gluten free etc. also when you first got diagnosed were ur bloods out of range? 

I’ve been diagnosed since April this year, I’ve completely changed my diet left with piles yuck!!!! 

But on the positive side my bloods are now in range but have issues like you with the labia minora vanishing, it’s like it was non existent in the first place. My left side has completely vanished and right a little bit.... everything one I look it looks different. 

Have you been assessed by the vular clinic, my appointment was just a waste of time, they just don’t have a clue what to do. How to help us poor souls going thou this. Sending love x 

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Karen23320,

I'm so glad you aren't having the flares and all seems calmed. I too have the very same disentigrations and such sadness that there is no end in sight for this continuing insult to my body and my sexuality.

Where did you go to have the tests run? Will the testosterone bring back the missing architecture? I'm am soon going to Doctor Goldstein in Washington DC and dont know what to expect. Except that his website shows corrective surgical procedures for releasing adhesions from between the hood and the buried clitoris and I pray he is for real. He is extremely expensive just walking in the door.

I haven't seen anyone mention having gone to him and wonder if you did? I don't know if you are east coast USA or not.

I wish you well and thank you for your posting. Julia2017

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Hi Karen, glad that you are on the way to feeling a lot better.  

I personally think that for some of us the labia minora will retreat no matter what we do.  Yes, I believe with work you can retrieve some of it..its whether you can keep up with it as some women have LS more aggressively than others.  

I think I have said before that at some point whether that is before or after menopause many of us will lose our labia minora as it appears to be the natural progression of the disease.

Hopefully, with the testosterone, your clit might come back but I think I would give it special treatment like using the clob once a day for a while, and then maybe weekly.  I am actually thinking of using the clob on my clit once a week, which I've never done before to avoid problems there.

Just my 2 cents.

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Completely changed diet- no sugar, no wheat, very little carbs, low- oxalate ( helps with kidney stones too). 

Can’t get into V Specialist here in US for  4-5 months, but the new gyn I am seeing seems to be knowledgable, open to my thoughts and doesn’t dismiss things that I say help. 

Will start testosterone cream soon and see if that helps with low libido, weight gain, irritability, etc.  dr says  it may cause clitoris to “reappear”- that would be nice, but labia is likely gone for good😢

I’m glad symptoms are under control for now and I keep a careful watch on everything. 

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I have nit been to Dr Goldstein, I just watched his webinar, including the surgery one. 

My Gyn said he woukd be able to di the clitoral surgery if/ when I devide if I want it(  it has all but disappeared in 9 weeks since diagnosis), but also said the testosterone cream he is prescribing me may make it come out again. Evidently it causes it to grow a bit. Not trying to get to high end of normal level ( 15-60), but somewhere around 15-20 would be good. Trying to avoid surgery if I can. No adhesions, just massive shrinking of right labia , left eeems fine? Weird! 

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My Testosterone is currently 2.7, equates to none. 

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Good idea, it can’t hurt, won’t hurt