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Just had this a year or so--are the changes likely permanent?

Posted , 8 users are following.

suzanne00
suzanne00

So pleased to have found your site.  I would welcome input as I'm a bit lost with this.  My symptoms clearly indicate a clinical diagnosis, but my OB-GYN's won't officially diagnose and treat without a biopsy (I'm in the USA where that seems to be standard tx, likely to avoid liability issues).  I don't want a biopsy because I have medication and lidocaine allergies, and that tissue is already thin and uncomfortable.  I have been using over the counter cortisone cream the last few weeks since my doctors think that this is what I have.  I have several autoimmune issues (e.g., Hashimoto's, Celiac, and multiple autoantibodies present, inc. anti-Smith, anti-centrome, etc.).  I am newly post-menopausal and have been on bioidentical creams, including estrogen for a few years. The greatest issue for me is sex.  About a year ago it suddenly became uncomfortable (though I was unaware that this was my likely diagnosis until recently) and initially doctors thought it was menopause.  Now, in spite of adequate estrogen, sex is uncomfortable to almost impossible due to vaginal narrowing and thin skin that tears easily.  My question is whether this will likely improve if I can move this into remission.  How could so many changes have occurred unnoticed until this year and suddenly affect me possibly permanently?  I am really worried about not being able to function in this arena which is so important in my relationship.  Have others had any similar experiences?

1 like, 108 replies

108 Replies

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  • Morrell1951
    Morrell1951 suzanne00

    Posted

    Ditto on Suedm's helpful remarks about stress. I think that's the number one factor.
  • suedm
    suedm suzanne00

    Posted

    Morrell makes sound sense when she suggests you could think about changing your gynae or dermalogical consultant - in my view - to one who is capable of making a medical decision without surgical intervention.

    If it helps I no longer see my consultant - NHS cuts- and only to return for an appointment  if I am concerned,(the hospital policy not my choice) my condition is quiescent- not progressing-

    but I will burn/  itch if under pressure and take remedial action asap.

    Also take a mirror and see what is happening to your undercarriage - make regular checks- someone actually takes photographs of herself to watch for changes. If you have a persistant sore area - go to doctor as soon as you  can - you dont want to get scar tissue if possible.

    If you have time do read the others thoughts on the various discussion streams- there is an alternative therapies discussion group as well if you are so inclined.

    One LS support group I was a member of at a Birmingham Hospital had a sex therapist to talk to us and she arrranged for us to go to an Ann Summers(a sex toy shop) to discuss what they have that could help in this area- rather than using dilators - which are pretty  ordinary clinical instruments - dildos were produced and vibrators of many shapes and sizes from pencil thin, to ouch dont go there! There was a lot of laughter and one or two found their appliances helped a lot. Ask your gynae if there are others in their practice with LS that you could talk to about your condition -

    Take care, and dont give up!

    Sue

    • suzanne00
      suzanne00 suedm

      Posted

      Thanks!  These are great suggestions and I've actually started trying some of the latter ones to stretch that tissue and keep the area functional.  I'll let you know if it works!  --Suzanne
    • marey
      marey suedm

      Posted

      l agree with your self exam suggestions....and keeping photos ...brilliant! thanks for that!!. .problem  for me was that my camera got stolen....someone will have had a nasty surprise!!
  • Ireneblake
    Ireneblake suzanne00

    Posted

    I am always sorry to hear of someone else being diagnosed with LS.  I was diagnosed in late February of this year and was so concerned and puzzled by it all.  I had been having symptoms for at least 15 years.  Last year my GYN made a comment on my white patches...but it was off hand and just said to use an over the counter cortizone.  

    Fast forward to this February during a very stressful time and my symptoms were over the top.  The steriod ointment, Clobetasol has been a life saver and it is true a pea sized amount goes a long way.  I am managing my symptoms with just a twice a week application at the moment.  I am also in the US and this is the only message board I could find.  I have been stalking you all for these past five months and your comments have been a huge encouragement to me.  

    I now use A&D ointment on a daily basis to help as a barrier cream.  Plus I believe the fish oil is a natural healing agent.  I have used a lidocaine cream as a protective coating when I think I will be sitting for long times.  It seems to help.  I have not had a biopsy, but I have every symptom with some fusing.  My big concern is that I will be able to stay off any more fusing.

    I also love to cycle.  I had to stop my cycling class for several months this year.  I am doing eveything I can to not have to stop one of my favorite ways to exercise.  I agree with finding ways to remain stress free.  I pray and I take almost daily epsom salt baths.  Going commando at home and my next step is to buy organic underwear.  My husband and I were able to resume having sex, but it takes patience and understanding...and me not being fearful.  Now that I am maintaining a good balance...he is happy to think that frequency will hold off the fusing of the vagina opening!  

    Thank you everyone for being willing to be so honest and proactive in dealing with this ugly thing of LS.

    • Morrell1951
      Morrell1951 Ireneblake

      Posted

      Yours is an encouraging story, Irene. Both cycling and sex! Glad you came out of hiding.
    • marey
      marey Ireneblake

      Posted

      hi irene

      thanks for coming forward....its really lovely to hear from you and thanks for your contribution. i'm a cyclist too....i've got a hand built claude butler...what about you?

      i haven't been cycling recently...now you've mentioned it i'm going to try again...thank you very much for your input. may i let you know how i get on with the bike?

      really agree with the epsom salt baths plan....epsom salts are great for de-toxing and great for saturating the body with magnesium....so relaxing and therefore great for a good nights sleep too. thank you sooooooooo much for the reminder!

      also the power of prayer....thank you for refering to this important aspect. i used to meditate but still spend time in reflection...thank you for the reminder about the importance of spirituality as well. you said a lot in your piece. i do hope you will come back and share some more ...its been lovely to hear from you and in fact you've inspired me to start a new discussion on the subject of sprituality....see you over there?

      love marey xxxxxxxxxx

    • suedm
      suedm Ireneblake

      Posted

      I wonder how many other "stalkers" there are out there? It would be wonderful if they could come forward too so that we can have a greater understanding of the numbers being diagnosed. I think it could be useful to know too where in the world we all live

      Thank you for your cheering tale and it would be lovely if you could resume cycling

      Best wishes Sue DM

       

  • marey
    marey suzanne00

    Posted

    hi suzanne

    i agree with the general point ...why have a biopsy if some one can visually indentify your condition...? you've more or less self diagnosed...although you have vaginal involvement in addition...essentially you have inflammation in the area.

    i could offer to meet you in the alt med section but in case you don't make it i hope i will be forgiven for a suggestion as follows. ... its most likely that you'll stick with whatever remedy you come up with in the following weeks. finding the least impacting (on your constitution) that works for you is prob your priority.

    i now know of several women who have completely healed by following...as it happens... all different protocols. at this point in time you may wish to make a decision. to seek for the total cure or compromise by accepting steroid treatment by way of a trade off for immediacy. tho one woman may have actually been cured by a steroid cream.... it seems to me the longer steroids are relied upon...and thank goodness this option exists as it helps so many dear ones on here...the more the condition is suppressed and retained...but minimally. i am sorry i have to go out mid flow. i will get back to you x

    • Morrell1951
      Morrell1951 marey

      Posted

      Also, Marey, Suzanne has Hashimoto's and celiac, so opting out of regular medicine is not something she's likely to be free to do at this point.
    • marey
      marey Morrell1951

      Posted

      both hashimotos and celiac from my observations are more receptive to alternatives. I've been party to bowel transections...its no way to treat the human body.
    • Morrell1951
      Morrell1951 marey

      Posted

      So interesting. I have a good friend who has both and is very careful about organic food, no gluten, etc. But I must say I've been surprised that she's on the regular drugs for thyroid. She definitely eats grains that have no gluten. I'll have to feel her out...
    • marey
      marey Morrell1951

      Posted

      it is interesting yes.

      Generally going gluten free involves quitting all grains ...even including rice ...and avoiding processed foods of any kind. Its often the methods of production to which the body is reacting.

      So 'just eat real food' is the motto. We avoid all grains and over processed stuff incuding 'gluten free' artificals....often packed with junk.  I call the reaction being 'gluten perceptive' rather than a negative.

      The whole thyroid thing is 

    • Morrell1951
      Morrell1951 marey

      Posted

      I suspect you're right. She does her own baking, but I know she buys 'products', which I see as a major industry. The health food store has a whole 'gluten-free' aisle now. My partner has met me half way. I was a healthy cook-from-scratch vegetarian, he was a cheeseburgers and ju-jubes junk-a-holic. So now we're eating a small amount of locally-produced clean meat and other healthy stuff. He's buddies with my celiac friend's husband and pities him for his and his wife's diet.

      Honestly, once sex is gone, I'm not really willing to do any more sacrificing, just the things I know make me flare right away. I don't indulge my sweet tooth, but I won't give up my two cups of coffee and ten ounces of red wine. We eat white buns a few times a week. I used to eat my homemade cabbage soup every single day for lunch. Now I eat a nut butter sandwich on seedy whole wheat bread while he has a salami sandwich on white.

      Not ideal, but if I fuss about it, my stress level will cancel out the benefits.

    • marey
      marey Morrell1951

      Posted

      oh morrell....I wish you no more pain! Its really not about a disciplining, self flagellation. You are clearly a very well organised thoughtful and disciplined person...unlike me who's a slob...as often as poss!

      its kind of what you have instead...not what you take out. A 'Nutrient dense' diet is the turn of phrase. Enjoy your new diet...i've gone thro the same major change and am no longer vege. I just really find it helpful to feel i'm linking with others who demand better conditions for the animals and to be part of a new philosophy. i haven't stabilised my diet....am to and froing about coffee....and occasionally enjoy some red wine but find i can't drink a full glass anymore.

      I think its more about using ingredients which help to heal and seal the gut and about noticing where the chemicals are getting in and shutting that door...ie via corn ...now completely GMO unless recorded as organic...but even that label is under threat.

      Hey organic coffee is good for you per some...a good antioxidant...subject to exclusions for bi-annual detox times...or whatever time scales you practise your detox/fasting. If you take it white well organic milk only obviously....and if you find a source of raw please let me know!

      love marey xxxxxxxxxxxx

    • Morrell1951
      Morrell1951 marey

      Posted

      I make my own yogurt with excellent organic small-local-dairy whole milk and started from a local cheesemaking supplies place. I preserve my garden's fruit and use it in the yogurt. We have organic oatmeal most days for breakfast, with our neighbours' maple syrup and fruit and yogurt. Lunch is usually great seedy bread and nut butter. Suppers are vegetable-intensive with small servings of meat. Even when we have burgers or sausages on a white bun (which is about the worst thing we ever eat) it's local organic artisan pork and local grass-fed beef. If I snack at night it's organic cereal and almond milk.

      So you can see I'm on it. Really on it. We've cut out all the bad stuff in the last six months. I was very lucky that my husband's nurse practitioner told him to lose twenty or thirty pounds. Instantly I was able to stop buying him chips and chocolate, pies and butter tarts. And I only bake occasionally, an oatmeal fruit crisp.

      Recently I've learned that a big piece of chocolate cake or a large ice cream cone or two butter tarts are all too much even for an occasional treat. I get a blowtorch butt immeditaely. It's been extra good in the month or so since I quit that.

    • marey
      marey Morrell1951

      Posted

      thats so impressive and wonderful.

      i would be incedibly interested to know whether there might be further improvement if you had a salad instead of the bread rolls and nuts instead of cereal.

      really really extremely interested!

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