LS seven years

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.

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.  

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

 

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!

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.

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?

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.