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LS closing anus

Posted , 10 users are following.

patricia86334
patricia86334

well, this is something I never thought about, never mind have.  I have posted on this forum before, but this is something new.  My ob/gyn told me two years ago that LS only affects the vaginal tissue.  Well, I never used the clobetasol farther back, and only discovered that my anus is almost closed!  This happened so rapidly.  I have looked on line at many, many sites, but when discussing anal LS, there are only one or two lines, saying it may cause constipation.  All say surgery isn't recommended because the skin will just grow back.  So, what am I supposed to do?  I only have an opening the size of a pencil now.  So odd.  I am upset that my dr. didn't know about LS affecting the anus, and only read about that here, which is why I looked at my own bottom the other day.  Is it too late to use the clobetasol now?  I am pretty upset and worried and scared.  Does anyone know anything about this, or even experienced it?  Thanks for any replies....

2 likes, 31 replies

31 Replies

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  • sarah33278
    sarah33278 patricia86334

    Posted

    You poor thing, that is very surprising but I guess not impossible. Many have talked in the online forums about having  anal LS but mostly about what there using and not so much talk about the skin as everyone has to get someone else to look. Given that we all use our bowels a few times a week you would think that this would not occur. Firstly many specialists who treat LS know that it is very common in both vaginal and anal. Given that your doctor was unaware clearly suggests that he does not have adequate knowledge of this disease. Waste no time and seek out another specialist who is specifically aware of this disease.  If you ring around ask them if that specialist has LS specialist knowledge don't go to just anyone who has a gyno title or ask for an immediate referral from whom your seeing now. Other option is specialist Dermatologist or bowel/cola rectal specialist. Seek immediate attention before it gets any worse. I would say that your doctor's lack of knowledge and treatment has dramatically delayed effective treatment resulting in the area severely worsening. Vulva clinics usually have LS specialists also. Is important to find someone quickly. My gyno let me down also. Let us know how you go.
  • libsan
    libsan patricia86334

    Posted

    Hello Patricia.  How scared you must be.  I had problems around the anus area when I first discovered I had LS about 10 years ago.  Every time I passed stools, I had fresh blood and it was sore.  I also had the insance itching around my anus and vaginal tissue. I got diagnosed and  used the clob and other than 2 flare ups over 10  years, everything was under control. For 10 years I have had 3/4 inch of fusing from my bottom up which makes intercourse too painful and I have abstained. In June this year, I got a mirror to the area and was horrified to see that my vaginal opening had closed by a further inch again from my anus upwards.  I was terrifed and couldnt believe how "silent" my LS had been and how much fusion had taken place without my noticing it.  Now I realise the area concerned for me is not my anus, but I think this may be of use to many people.  In July I had to have a smear test.  I booked with my lady doctor and spoke with her over how painful the area was and asked her to be very gentle.  She was most sympathetic, but went ahead with the speculum and gave no thought at all to the fact that she just pushed it straight in without lubrication and basically she tore me open.  IT WAS PAINFUL and I was very upset afterwards, but miraculously 3 months on, my enlarged opening has stayed. With a mirror it was interesting to see where one side of my lips had fused with internal skin on the other side.  The area was raw and I could only urinate in a bath of warm water, or standing up with my fingers and lost of tissue covering the raw side.  I still have the 1/2 inch fusion from my anus towards my vagina but she has actually done me a favour and the further inch of fusion has gone.   I am now using clob and vagifem 2 nights a week and I am also using EMuoil 4 times a day to keep the area moisturised.  I am also using a medical set of dilators.  After having this happen, I just do not want the area to close again and I am being vigilant.  I know you can buy some kind of anus dilators and with lots of lubricant and perhaps in a warm oily bath, you may be able to help yourself.  A bit of pain is definitely worth while.

    Before I was diagnosed with LS i used to have long baths with copius amounts of baby oil in the water and would put neat baby oil on the area.  This did give me temporary relief for a few hours after the bath.  I am thinking this may help people who dont want to use lots of clob.  With the clob, it is so important to apply it to just the "dry" lip areas and to not go anywhere the uretha as this causes a different kind of inflamation.

    This is the most loneliest of illnesses - I have only told my husband as I am a very private person and I am stupidly embarrassed and feel a failure for getting LS. Thank you to everyone who contributes to this forum - just to know I am not alone means so much to me.

    • sarah33278
      sarah33278 libsan

      Posted

      Dear Libsan

      I couldn't help but reply to your message and felt sadened at what you have gone through with all the fusing and then the smear test.  Its examples like these that makes me extremely angry in that you were diagnosed so long ago but had simply no-one to regularly review you and address your fusing and then on top the extremely incompetant woman that did your smear test.  With your history this doctor could have easily be sued or alternatively could have lodged a complaint which would have severely impacted on her credentials to ever do another smear test again.  I had the unfortunately occurence of having a male doctor once who caused so much pain and upset during a smear test that I lodged a complaint and never went back.  

      I think as women we are often too quiet and placid when it comes to our medical problems diagnosed and undiagnosed and we simply are too afraid to tell the medical world what we actually think when things do not go as expected.

      The fact that you had or have such severe fusing is horrendous, I couldn't even imagine how awful and scared you must of been.

      Since I have been diagnosed I have completely lost interest in intercourse and don't even want to explore dilators, is just too painful.  I would be really careful about baby oil as these contain fragrances and often other ingredients that may irritate someone with a skin condition.  I use Johnson's baby oil for removing mascara and thats about it.

      I have been trialling out emu oil on lips and dermeeze moisturiser twice a day but do not see alot of difference, skin is extremely dry, will be going to see a more specialised dermatologist soon to address all the issues.

      It is a very isolating disease but I don't feel that it is loneliest as there are so many lovely people on these online forums or going through the same thing that it brings comfort to one another.

      It is not your fault or anything you did or didn't do to get LS and do not feel that you are a failure as you wrote above.  It is horrible and annoying but as humans we are all susceptible to one disease or another at certain times in our life, we cannot stop ageing or stop illnesses and certainly the human body is what it is, we can only try and report and manage as best as we can, try and enjoy life as best as we can, and that is all that we can possibly do, no-one is to blame.

      I'm sorry you have had such a terrible time.  There is another huge support group for LS online that you may want to visit or join, here is the link and please stay in touch.

      https://groups.yahoo.com/neo/groups/LichenSclerosis/info

       

    • libsan
      libsan sarah33278

      Posted

      Dearest Sarah - Thank you so much for such kind, supportive and helpful words.   Your penultimate paragraph is one way that I have never looked at the situation before - and yet it is the right way to look at it.  How sensible you are.  I will remember you words and your kindness.
    • hanny32508
      hanny32508 libsan

      Posted

      Thank you libsan, your sharing was of great value to me.  I'm trying to keep the dilated area open, just recently performed by my gyna. Your experiences gave me some positive hope that I will continue to be able to urinate.  Such simple wishes one gets when living with LS.  
  • suedm
    suedm patricia86334

    Posted

    Oh Patricia what a lot of stressful times you have had. Suzanne said to be kind to yourself- It is good advice.

    Dont stress about the future  try and ease the now. Sleep i s therapeutic try and make sure you do get some sleep

    Drink  a LOT of water and clear fluids, keep the exercise up and  try and keep the stools soft. Getting constipated is Not A Good Idea.  Make an appointment to see you doctor ASAP and get a referral to a gynae/dermatologist of your choice Are you  in the UK?

    The anal sphincter can get too tight and is dilated under anaesthetic, and as has been said on this thread rectal dilators are available  however i would be slightly cautious about inserting  anything into the rectum  without proper instrcution. I have seen too many perforated rectums (mainly from inappropropriate use of male sex aids it has to be said) but i still would counsel caution because sizes vary

    Take care and i do hope you get things worked out for you soon. Dont forget the Koebner affect and use the Clobetasol into the healed scar tissue - Do talk to your medics about this aspect too - The Dr G's talk suggests the use of potent steroids to prevent the "grow back" as you said

    Good Luck

    • Guppy007
      Guppy007 suedm

      Posted

      I had no idea that ones anus could be effected..not sure how I missed that one!  To be honest I have never put Clob on my anus.

      So my question is... are you regularly putting cream on that area? is it necessary?

       

  • Guppy007
    Guppy007 patricia86334

    Posted

    I had no idea LS can effect the anus...is it necessary to apply Clob regularly to this area?
    • Morrell1951
      Morrell1951 Guppy007

      Posted

      It is a bit tricky. I's been applying it to the red skin around the anus, which calmed down when I gave up coffee and most sugar. But the gynae said there was still some active LS, so later I had a better look. I see now that the papery skin at the back is kind of whitish. So, it's not about the skin of my bum crack, but the fragile skin that foolds into my anus.

      So, yes, I apply Dermovate there, too. Not true for everyone, but worth monitoring with our mirrors and speaking with the doctor about when we go for our twice-a-year checkups.

    • Guppy007
      Guppy007 Morrell1951

      Posted

      Okay thanks for that. I will have to have a closer look I think, I dont think I have noticed anything wrong in that area but then again I havnt really had a really good look.
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