Had LS for years, just diagnosed

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Hello!

I'm a 41 year old female and was just diagnosed with LS. The feelings I have are anger and relief. I know I've had this for as long as I can remember, but 1) I didn't realize that something was "off" and 2) no doctor ever noticed the symptons. 

The skin above my clitoris and my clitoris have fused on and off for years. I've had the white, crinkly skin as well as the itching. Fortunately, my vaginal opening seems to be unaffected. 

I'm angry because I can't believe all those doctors never noticed and the ONLY reason why they diagnosed it now is because I told them that I think I have this. 

Anyway, it has been confirmed and they started me on the Clob. I've been reading through the posts here and I'm looking for clarification on a few things:

1) My doc advised me to apply the Clob 2x a day and come back in 4 weeks to see how it is going. I've read different things about 1x a day vs 2x a day. I really don't want to make things worse, so should I stick with 2x or switch to 1x a day?

2) I've read different things about reversing the fusion/adhesion. Does the Clob do this? Will I always be fused or is there a way to un-fuse my clitorial hood and the surrounding skin?

3) I've read different things about coconut oil and baking soda. What is the purpose of these two items? How is it used? How often it is used? 

I know that there seems to be a connection with autoimmune diseases and LS, so I figured I would mention that I do have Hashimoto's (thyroid disease). I'm sure I had the LS first because like I said I remember my vagina being like this on and off forever. The Hashimoto's is a relatively recent thing. Dianosed withing in 2009-10. It has been under control since then. 

I've never really had issues with sex and I had a baby 3 years ago without knowing about the LS. 

Due to other circumstances in my life, I haven't had sex in almost 4 years, but now that I know this and am actively trying to have sex (not successful yet!) will using the Clob be a problem? 

Anyway, I'm so glad that this forum exists because the information out there is confusing and lacking. 

Thanks for reading and hope you have a great day. 

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  • Posted

    Hi,i understand your frustration with doctors. I have vaginal atrophy but was not told til i looked at my online record,im in the U.S. Also i have 3 doctors saying they dont think i have LS one said i might have a mild case and this was only after i found out about LS on the internet. Then doctors get mad if we look things up on the net. Ha. We spent tons of money last year with my going in for irritation,itching,burning etc. Well all I have to say is thank God for the internet and these forums more help then anything I got out of any of my doctor visits, all I got was high bills. Thanks for letting me vent. Im looking forward to the answers you get on this subject,ive read alot on the forums but could use a recap. Glad you finally got a diagnosis.
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    • Posted

      That is where the anger came in. The first doctor I went to, was like "It is probably a yeast infection, so take this pill." I was frustrated and flustered that I was in tears. Not because I was sad, but because I was angry and humiliated. 

      I told him, "Look, I don't see a whole lot of vaginas, so I didn't really know anything was wrong until I started doing research. I KNOW I don't have a yeast infection!!"

      He (he being a physician's assistant) told me to take it anyway and he would refer me to the GYNO. 

      Thankfully the GYNO listened to what I had to say and said, yep it sounds like LS, let's do a biopsy just to be sure. I had my follow up on Wednesday and he confirmed it. Told me he will try to fix me up. 

      Of course, I'm grateful for the way he treated me, but I'm still looking for answers, just like everyone else on this forum. 

      Ugh. I get that doctor's don't like the fact that we, the patients, use Dr. Google, but if I don't advocate for my own health, who will?

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  • Posted

    Hi gosh you case sounds similar to mine. We are all different with LS and what works for one may not work for the other. I found the Clob treatment made me worse sadly. Like you I got so much confusing information however did follow the typical protocol of the Clob use for 3 months - but ended up with bad skin issue and other problems. I had no itching and I feel from all I have read that if you can avoid strong steroid use then do so and try and get comfortable other more natural ways. I do not think anyone here will tell you Clob reverses fusing - it may prevent more? I spent huge $$$ at 5 specialists and now follow a naturopath and after 15 months of hell I finally feel I am getting ontop of my LS. She gave me strong mix of probiotics for 10 weeks, thyroid natural meds and herbal skin cream. She felt over use of antibiotics and stress caused my LS to expose itself but said I have probably had it for years! I got some wonderful advice from this site and so grateful to all those who share because I think I would still be going round in circles wondering and listening to Doctors who really don't have a clue! Our bodies are all different and its a matter of trying what you can until you find that right mix. Good luck
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  • Posted

    Good you found us, so we can freely share our experiences.

    Personally I don't think Glob will reverse the fusing.  My experience is that it controls LS when it is really acting up.  

    Sooner do I contribute my reverse fusing to baking soda baths (1/3 cup) every other day and rinses after every bathroom visit. (three pinches in a Perin bottle)(fill with luke warm water)(dab dry and cover with coconut oil)  

    At present I also mix in a few drops of tea tree oil in a small amount of coconut oil.  I do this so I will have to use even less of the Globetasol than before.

    And what I should not forget to mention:  sugar free diet as much as possible. My diet also includes: gluten free, almost dairy free (cheese is a sure trigger for me) alcohol free, caffeine free.  The last two also because of thyroid and adrenal issues.  And mainly home cooked meals with lots of good fresh vegies.  

    I have just this past week had a control visit to my gyno and his observation was that all looks good and he told me to keep on doing what I'm doing.  Nothing suspicious looking either.  All is well I may think.  Have to come back in another half year.  

    It is perhaps hard to believe, but I was totally fused up, only a pinhole left to pass urine.  A dilation procedure was done and after that I became very diligent in an attempt to reverse all this. (Still dilate every other day)  Perhaps I was lucky, there is no official proof of course that my method works for all.  But perhaps it gives it some direction.  

    I don't know whether this answered your questions somewhat.  If you need more clarification, I will give it another try.     

     

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    • Posted

      So do you still use the Clob or only the natural remedies? I'm all about the natural remedies for sure. 

      I'm not sure I can swing a bath every other night though because I'm a single mom with a crazy 3.5 year old. 

      For the post potty baking soda/CO thing, do you carry it around with you for when you are out? I'm just thinking how that will work while at work. 

      I didn't mention that I also have LS around my anus, which explains a whole lot. For YEARS I suffered from extremely itchy anus and severe fissures that were soo painful. 

      Now I know what it is. If only I had known....

      I'm willing to try the natural remedies because I figure there are less side effects. 

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    • Posted

      Most of us are using the prescriptions while in addition trying all this other stuff.

      I put a basin in the tub with warm water and a tbsp of baking soda. I squat and splash before bed.

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    • Posted

      When LS is really acting up I may have to use glob a couple of days in a row, but use the smallest amount.  But have had to use it less and less.

      I made myself a pouch in which I have the ingredients I use for bathrooms away from home: small towel, small containers with baking soda and coconut oil, some cotton pads and my Perin spray bottle.  Where possible I choose the handicapped bathroom that usually has a sink and warm water.  If not - I fill my bottle at the sink available prior.  It takes a bit of getting used to, dragging things with you and having to take some extra time for bathroom visits.  I also bought myself a nice slingbag to carry all, since I had difficulties fitting all in an ordinary handbag.   

      Indeed, if we only knew all about this LS before it progressed so far ...     

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  • Posted

    Too familiar – no diagnosis for decades. Four for me, had LS at 22 – finally diagnosed at 61. I went into remission in my forties even after my clitoris had started to be absorbed, it sort of reversed for some years. I started again with a vengeance at menopause.

    If you get a set of dilators and use them religiously with coconut oil (lubricant, healer, barrier to urine) you might be comfortable having intercourse.

    We talked about this 2x a day prescription recently. Doctors vary really widely in their understanding and advice regarding clob. And our cases vary widely, I think largely because stress makes it worse and what's more variable than life? 2x daily is an absolute maximum. I'd use the tiniest bit – [u]half[/u] a small pea size – maybe the theory is to keep the dose steady.

    I use a tbsp of baking soda in my splash basin every night. It's just an old-fashioned first aid thing.

    I'm touting the mixture of a few drops of frankincense essential oil in 25 ml of jojoba oil. We have a young man (the reason there are two LS groups – this is the men's) Liam, whose glans was fusing to his foreskin and this mixture halted the adhesion. Can't say for sure it'll work for you, but it's a nice soothing mix anyway. I do attribute at least half of my current remission to it.

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    • Posted

      Thanks for the response. Halting the adhesion is great, but I'm hoping to reverse it. I mean I get it might not reverse completely, but I would really like my clitoris back. 

      I haven't hit menopause yet, but it is good to know that it might make the LS worse. 

       

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    • Posted

      I like to think that any adhesion that's recent is reversible. This means careful stretching in a baking soda bath, then maybe the frankincense-jojoba for soothing and healing of any small tears.

      There's a commercial doctor in the US who says he can free a buried clitoris without a blade, using something that sounds like a micro pressure hose - water. Hugely expensive. No promise of permanence.

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    • Posted

      Give it time and be patient DK.  The reversing does not happen overnight. It took a long time to get this far, so it is my conclusion that it will also take time to 'un cover'.  Forceful methods may not be desirable or have the best results. Though I would recommend dilation. 

       

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  • Posted

    Hi sorry you had a horrible time with doctors and getting diagnosed, I was getting told what I had was fungal skin infections and skin hypersensitivity until I finally thought I would go to a private doctor who diagnosed with LS 

    . I was told to use clob 1x a day for a few months, I would stick to what your doctor said as they will probably tell you to lower the amount when it has taken affect, the main thing is don't use too much of it, just a tiny amount to rub into the affected areas. Regarding the coconut oil I was recommended to use it on this site as my inner thighs had gone extremely sore and sensitive, I also use the coconut oil on areas that are itchy for me and it really helps, I put it on before I go to bed as I find it does get everywhere 

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