Can fusing of clitoris get so bad that it stops me being able to wee? Am so scared

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Since diagnosed with LS in November despite using all creams prescribed am worried fusing is getting so worse in clitoris area

Can it get so bad it stops me being able to wee? Am so scared don't know what to do

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13 Replies

  • Posted

    Hi mariesm, I have had L's for quite a few years now, my clitoris has been fused together for quite a while now ,it doesn't stop me weeing , but keep checking your self regularly to make sure your entrance to your vagina doesn't fuse together, if you can see that, that is beginning to fuse you go see your gyney.

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  • Posted

    Hi there. I have had this disease, fusing etc. but I keep it under control with Clobetsol. I can only use this ointment for a couple of weeks at a time it is a strong steroid. I can still pee. But it was a big concern at first because fusing rapidly spread until I got diagnosed and treated. Don't panic. Hope you have a good doctor.

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  • Posted

    Hi, I was also diagnosed in Nov - tried creams then ointments - fusing has also occurred - was on prednisone for 10 days - inflammation was reduced and the vestibule (vaginal and urethral opening) was much wider - so assuming prednisone could be used to help with urination - also Gyn Doc said that the adhered tissue could be separated if necessary but problems with urination usually do not occur.   I think women that have sensitive immune systems and develop very dry skin following the loss of estrogen due to menopause are the ones that suffer from this condition.   I am trying to keep the skin moist in hopes that the inflammation will not return.  Not a happy camper - disappointed with the lack of knowledge about this problem.  Oh estrogen - took u for granted - wish u would come back !!!!  😒

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    • Posted

      Why is it that I don't hear of any research into this horrible disease?

      So many women suffer with it, is it because research is done by men and they can't be bothered, if it was a prostate problem, you'd see a ton of research. Just my opinion.

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    • Posted

      I agree Helen plus the lack of sensitivity regarding investigations.  Some consultants really do need to work on their bedside manner,
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    • Posted

      I know Karen I'd give anything to have some oestrogen.  It's weird how it's needed so much in our bodies without us knowing.  My skin seems to thin on my face and hands let alone down below.  Too scared to take HRT though. X

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    • Posted

      Hi Sue - yes current protocol for HRT is to use it for as short a time as needed to deal with menopause symptoms.   I chose to avoid HRT use following my total hysterectomy- I was going to be smart - now I am dealing with LS and my Gyn doc refuses to prescribe HRT - current protocol won't allow him to prescribe it - shouldn't we have a choice?  I bet he will prescribe HRT therapy for his wife - unless he dumps her for a younger women.   I would like to see a survey conducted to determine how many post menopausal women are suffering with LS - then maybe something better would be developed.   Ok Ladies - off to moisturizer !!

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    • Posted

      Yes Karen I think there are a lot of women who are suffering but for whatever reason don't see someone, I can understand though it's not easy getting our bits out over and over is it plus like me don't even know this sort of thing happens.  Unless it's something a friend or your Mam mentions to you you don't know about it.  Thanks to the internet we learn a lot don't we.  Did you try local oestrogen?  I'm supposed to but frightened of putting hormones there after so long.

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    • Posted

      Agree sue, I tried using the estrace cream but it seemed to burn the skin and make things worse - Gyn doc said ointments should be used - haven't found an estrogen containing ointment yet.   It seems that the doctors I have talked to are quick to prescribe the steriod and are advising us to use it as often as we like even though there is a cancer risk from its use but they are unwilling to prescribe estrogen that also has a cancer risk.   I still think that we as LS suffers should have the right to choose our type of treatment - I have asked every doctor I have seen about the estrogen connection but they refuse to admit the link between it and LS.   So, we suffer on as our mothers and grandmothers have done.    😩

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    • Posted

      Yes it's very hard to know what to do for the best.  We are left with the worry about side effects of the treatments which are very easily and readily prescribed for us.  

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  • Posted

    Take a look at posts from Hanny.  She has experienced fusing and reversal and her posts are informative and encouraging.  I am having good results with borax solution day to day and clobetasol twice weekly and fixing has lessened.  Also moisturize daily with coconut oil  Re estrogen, I tried the Premarin cream reluctantly, as I am a breast cancer survivor. But after two applications of the cream, I experienced a the symptoms o a mini stroke!  So won't trust it again.  

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  • Posted

    How I loved estrogen to relieve hot flashes and sleepiness when I started into menopause.  But a year later developed estrogen dependent breast cancer, so goodbye, HRT,!  And now bad experience with the estrogen cream prescribed for Lichen Sclerosis by gyno so never Estrogen again for me!
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