LS seven years

Posted , 7 users are following.

I'm sorry for anyone with LS.  No one knows it's there. No one sees it but LS is extremely painful.  I was diagnosed 5 years ago.  For two years I was misdiagnosed with yeast infection.  After a biopsy it was confirmed LS.  I also have Vitamin D defiency, depression and some times anxiety.  As others have admitted, I too have been molested, for years by my father, then by a dentist while having my wisdom teeth pulled and again by a gynocologist. No sense in dwelling in the past.  Move forward, think positive for a cure for this disease.  I've tried, coco butter, A & D ointment, and because I live in Washington state, I've even tried ointments with cannabinoids, CBDs they are called.  Yes, I've tried the Clobetasol ointment.  Anything to stop this pain that will wake up in night.  Anybody get those shooting pains like you're being stabbed?  Clobetasol works for a while.  For me, only a few months of treatment lead me to two bacterial infections under the hood of the clitoris.  Be careful not to use too much as it does thin out your skin.  Yes, I've also tried Estrace. Estrace set my bottom on fire. Seriously felt like a sat on a bee hive hence I don't recommend it.

Luckily I have an understanding family.  They know when I'm in pain, even if try and hide it. What I reccomend is getting a shower head that attaches like a hose.  Rince with water, saline solutions anything that releaves that pain.

A&D ointment and Desitine has helped with urinating because it coats your skin. Although bowel movements for me can be excruciating when LS reaches your rectum area, warm or cool warm while going helps.

I think I will try the Manuka honey and actually the H202 mix with saline makes perfect sense to me.  I'll try that too.

Thank you all for your messages.  Maybe together we'll figure this LS thing out.

der

2 likes, 18 replies

18 Replies

Next
  • Posted

    I had this for seven years before diagnosis... When it was quite a rare condition. Once diagnosed and treated it cleared completely after nine years. Unfortunately so much damage was done I no longer have normal parts. No labia at all. My bladder was scarred and damaged on the inside which resulted in extreme over activity. It won't tolerate any amount of urine. I have to have six monthly Botox treatment in order to be dry at all. At least I rarely get pain now. However I have had three other horrid auto immune conditions since. As soon as one goes I get a different one. Psoriasis, Graves' disease and right now Polymialgia rheumatica which completely knocked me out. Despite all this I am managing and reasonably happy. I am very resentful that the last twelve years of my life have been so pain ridden but I know there are others far worse off than me.
    • Posted

      What was your treament? "Cleared completely after 9 years", wow.

      I've heard there's an auto-immune connection, one right after another.

      It seems all connected, gut, immune response, hormones, thyroid problems.  Not to mention genetics, I wonder about the Paleo diet.

      Who's tried it?  Successfully or not?

    • Posted

      The treatment was Clobetasol, and Lidocain gel for the pain. I beleive by the time I was diagnosed I beleive it had almost run its course as many auto immune disorders do. I have read that many do not respond to the Clobetasol. I also discovered pure Emu oil back then when it was almost impossible to find. I had been to New Zealand and found many natural remidies that we don't have here including Rotarua mud... believe me I tried everything so not 100% sure what worked.
    • Posted

      Hi christine, You say your LS has completely gone and not only gone into remission. What time lapse has there been since you have been free of LS. I have read that it can disappear in younger women but never been known in women over 70. As I am now in my 70's that doesn't bode well for me then.
  • Posted

    It's sad that so many LS suffers have been misdiagnosed before the the real complaint is discovered. 

    I began to have vulva discomfort then realised something was not quite right when I saw white patches in the vulva area.

    I diagnoses myself by researching vulva diseases on the internet.

    Armed with my new found knowledge I went to my GP and told him what I believed I had. He examined me and agreed I could be right then referred me to a gynecologist consultant. The consultant performed a biopsy which confirmed LS.

    I don't have a great deal of confidence in general practioners as to many only know the basics and don't specialise in anything.

    Complaints on incorrect GP's diagnosis and treatments occur too often and I try to discover what I can about any complaint I have before I go to a GP.  

    • Posted

      Yes, I agree with you. We have to do our homework ourselves. Most of the GPs that I have seen have little or no idea about LS. I am telling them more than they were ever trained for in that department. Certainly not enough information other than the Internet and these forums. For something so severe and life changing, one would think that there would be scientists out there trying to find a cure. Many of us are driven to depression, divorce, and a host of other things because of this. Thankfully I have an understanding husband, and we are older. (both 70) now. But we were only in our late 50's when I was diagnosed. We both researched this together and come to an understanding of my condition. What about those in their 20's, just starting out. It's not easy.

      Good luck and keep gathering information.

    • Posted

      Not a nice condition for us to have is it selina. Don't hold your breath when it comes to money spent on researching LS. The illness is not high profile enough. Pharmacuetical firms who fund most of the researching are only interested in the areas that are going to make them big profits. As of yet there doesn't appear to be much attention and awareness given to LS unless of course one suffers with it.
  • Posted

    Hi Der,although i am waiting for my first gyhy appt,my Gp has said 100% i have Ls,and it has since spread to my rectum and seems to be blistered across the opening and like you,i find it excruciating to open my bowels and i have to push thru the barrier of blisters and soreness,and its unfortunately something that can`t be controlled,when ya gotta go you gotta go!i am in constant pain for hours afterwards and wonder just how much i can take,from reading others experiences it seems its going to be a lifetime of ointments and pain.i`m terrified of having a biopsy and hopingi`ll be offered a general anaesthetic,how can so many women be in so much pain and know there is no cure?? sorry for ranting on your post xx

     

    • Posted

      Been there and still have the problem sometimes when I use the bathroom. One of my doctors prescribed a medication (ointment) for me. It was a combination of Lidocaine, Petroleum Jelly (vaseline) and diltiazem and was combined at a local pharmacy. There is an applicator with it, whereby I can insert the ointment into the rectum. It is awesome and after a couple of treatments the sores heal. I try to keep my bowels regular and with soft stools. (ie. eat lots of fiber, followed by plenty of water) It all helps and the other thing is to keep rinsing the area frequently to make sure that the fissures are not seeping fecal matter through the anus. Not nice converstion, but if I can be of help...I want to be. Good luck

  • Posted

    Hi there,

    I have been away from this site for awhile, but your posting prompted me to write again. I am 70 years old and have had LS for about 15 years. Like you I was treated for every kind of infection down below, until I had a black mole on my abdomen that was removed and sent off to a lab. It confirmed LS on my body, but only in one small patch. The dermatologist asked me if I had any problems in the genital area since one may follow the other. He recommended a gynecologist who immediately confirmed it was LS and in progressive state. I was treated with Clobetasol, back about 12 years ago. It has worked for perfectly for me as far as itching and soreness but it has not stopped the fusion. Pretty soon I will have difficulty with urination. I try to keep massaging the area to stop it from progressing.

    My biggest problem is that the LS has spread all over my body and flares on my abdomen, thighs, armpits, breasts and lower back. It has turned into a living nightmare for me. No one understands, except for my understanding hubby who spent countless hours researching this horrible disease. He knows what I have gone through. People think that because you smile and are seen in public, that you are on top shelf. lol

    I am being allergy tested now to see if there are things that trigger it. I have zero food allergies, but may have environmental ones that include scents, synthetics etc.

    This is a disease that is prominent all over the world and especially in women. I keep wondering why not enough doctors know about it. My dermatologist was honest enough to tell me to follow these forums and try to educate myself on the disease by communication with others who have it. We need more female specialists and scientists!!!

    Thinking of you. You surely have been through some rough experiences. You have the right attiude though, move on and put the past behind you.

    Good luck!

  • Posted

    I first noticed the symptoms of LS in France when on holiday. Although they may have been present before the real shocking pain and agony started after I had been swimming in a mountain pool that had been treated with chemicals to make it safe for this. Not chlorine...possibly Bromine or something else. I also worked at various private places that had pools...most treated with Bromine and since retireing and not swimming any more I have not had one incidence of LS or the other condition I had alongside Lichen Planus. I had another biopsy booked about five years ago and when I went they told me all active evidence had dissapeared The damage was and is still there but no more pain or spreading lesions or itchyness. I wonder if there is a connection? Bromine has been increasingly produced since the sixties. It was once used as a chemical weapon as was Chlorine.
  • Posted

    I am so sorry to hear about what all you have gone through.  You just have to hang in there and hope for more of the better days than the ones that are so painful.  I am so surprised to see how many similiarities that some of us have.  I have LS, then I was diagnosed with NUMEROUS vitamin deficiencies, so I now take a handful of vitamins daily.  Then I was diagnosed with low Thyroid (AUTOIMMUNE), now I have something else going on.  Tested positive for ANA and sending me to rheumatologist and cannot get in till Sept. Having unbearable joint and muscle pain.  Looking like possibility of Lupus (ANOTHER AUTOIMMUNE DISEASE).  Why does there seem to be a link whenever you have Lichens, that other autoimmune diseases follow?
  • Posted

    You know on a good day I can joke to myself about this disease.  Like thank God we don't sneeze down there on those lips.  Can you imagine? Bend over and say 'gesundheit' or God bless you to my bottom.  Sorry if anyone finds these crude but I've got to keep my sense of humor.

    My lasted advice from my much loved doctor is to take Zyrtec 10mg in the morning and Benedryl before bed. It works well when I have flare-up.  Both being antihistimines they have a tendency to make you drowsy but atleast I'm not in pain.

    From my own research I've discover that if this an autoimmune disease it means one of my immunoglobulins is producing too many masts cells.  Those mast cells produce and release histamine.  Histamine make us itchy, like after a mosquito bite, we scratch, it skin burns and the inflamation swells. Our body produces histamine to rid of foreign substances or invading microbes. It's part of our wonderful system to fight infection but if our body makes too much, we suffer.  

    How do we stop our mast cells from producing too much histamine? Gene therapy?

    That is, fix the gene or genetic material that codes for the protein systhesis that makes too much histamine.  What a mouthful.  And we don't have that yet.

    In the meantime, I'm taking antihistamines when I'm in real bad shape and looking for the Manuka honey.

    • Posted

      Hallo dertater, It could be worth trying an antihistamine diet.

      There are food lists on the internet that name high histamine foods and low histamine foods.

      Cut out matured pickled fermented foods and eat foods as fresh as possible.

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.