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
christine_fay dertater
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dertater christine_fay
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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?
christine_fay dertater
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norma54754 christine_fay
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christine_fay norma54754
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norma54754 christine_fay
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norma54754 dertater
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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.
Octopus_1289 norma54754
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Good luck and keep gathering information.
norma54754 Octopus_1289
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susan99000 dertater
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Octopus_1289 susan99000
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Octopus_1289 dertater
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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!
christine_fay dertater
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beth403 dertater
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dertater
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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.
norma54754 dertater
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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.