Your posts are helpful and hopeful

General health and lifestyle
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I'm reading all your posts with interest. I'm 66 and I've had LS since 2002 that I know of, and it's getting better with changes in treatment, but I'm not all the way there yet. It's so hopeful to know some of you have accomplished a recovery. Good on you!

I just intend to confirm some of what I've read here by telling my story.  I think my LS started with yeast infections decades ago. I was taking over-the-counter meds for years for recurring vaginal yeast infections. By the time LS was diagnosed by my integrative practitioner, yeast was systemic in my body. I'd also been a lifeguard in the 60's, so lots of exposure to chlorine! Just a theory but my alternative practitioner agrees that would be a factor. That and polyester swim suits.

As for my gut, I had five years of constipation before I was diagnosed with LS. I think that was related to the yeast. I also went through a spell of being acidic systemically. At that point my doctor said stop! just stop - there was too much stress in my life. Since I had very little energy due to acidity, that wasn't hard to do

Now I use digestive enzymes, psyllium twice daily and lactobacillus and drink plenty of alkaline water. Also drink green smoothies daily blended with seeds of all sorts incl. flax seed. Plus avocado, a small amt of beet (great to combat constipation) and tons of spinach and/or kale plus whatever other raw veggies I've got in my fridge. No more constipation and I'm feeling really good!

Diet: no dairy, wheat, flour, sugar for years now. The good news: I make my own "cheez" - cashew based - requires a high-speed blender. But it's tasty. The book I use is called Artisan Vegan Cheese by Miyoko Schinner. It even has a recipe for cheese fondue that tastes like the original. Only downside - using veggies to dip instead of French bread....

My mainstream doctor prescribed mometasone ointment twice a week but my alternative doctor said testosterone cream would be better because it's not a chemical (still cortisone though). So now it's testosterone. My systemic levels of testosterone were low anyway, he said.

My last flare-up was a doozy and it was after December holiday when I'd cheated on sweets. I cut way back on sugar and the symptoms started to subside. My sugar levels were still high and I was experiencing "brain fog" so I finally cut back on processed sugar altogether. I use stevia a lot and only eat the equivalent of two fruits a day, usually less. At the next appt my doctor told me I had been borderline diabetic the previous visit, so now I stick to minimal sugar and the brain fog's gone. That is such a relief.

I am retired, so have time for yoga, mindfulness meditation (both are relaxing) and exercise which allows me a good sleep at night.

That's me; hoping this info is helpful.  Thanks for your posts. It would be so good to lose the LS.

 

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Hi Andrea

Read your post with interest, haven't posted for sometime.  You and I seem to have very similar circumstances, I am 52 y.o. and have had a long history of reoccurring yeast (Thrush) infections.  I thought they were all Thrush infections and because here in Australia you can just obtain Canestan or Diflucan One over the counter just use to go to chemist and buy it and treat myself instead of reporting reocurring symptons all the time, got tired of reporting same thing every month. All symptoms bagan at 17 when menstruation began boy did I have problems with that.

long periods over 7 days, abdominal pain, heavy bleeding which eventually started coming out the other end every menstruation, every month, had to wear pad at front and pad at back, no specialist in Australa knew why. Because of the dual bleeding issues I ended up with endometriosis diagnosed by lap, was treated.  Because I was still menstruating 2 years on endometriosis diagnosed a 2nd time and treated, all the while itchiness, UTIs continued, no one could help me for 20 yrs went to same gyno, a highly skilled and experienced gyno, who in April of 2014 on examination of same thrush like symptoms, missed LS.  

Id had enough and decided to do my own research on these reoccurring symptoms online. By this time I had had numerous pelvic and trans vaginal ultrasounds never again, I found a Woman's Sexual Health Centre and Vulvadynia Clinic for women who require specialist consultation and examination, also for women who have painful or sexual dysfunction BINGO.  

I had a 10 min examination by a lady specialist who diagnosed LS front and rear, I was horrified so long reported these symptoms to no avail and now this diagnosis.  I was fuming mad so mad that I wrote to both The General Practitioner Association, The Australian and Gynaecology Association, my own GP Clinic and of course my Gyno of 20 years regarding years of constant frustration through GPs, Gyno's, Hospitals, undergoing various tests and ultrasounds, repetitive examinations year after year of misdiagnosis and now finally after just 10 min examination I had a diagnosis.

At 50 menstruation stopped and I was celebrating but symptoms continued.  My treatment plan for LS is Diprosone OV twice a were front and rear or can use Advantan which is a little gentler and I use Vagifem pessaries twice a week which seems to work for internal itch.  I have been advised that LS does not travel up a woman's vaginal tract but the that with a grain of salt given so many misdiagnosis and overuse if thrush treatments. Doing well. Treatments have been successful but am told are lifelong.

like you I have problems with milk, wheat, flour and sugar.  I am a terrible sweet tooth and need to use more control. Wondered if you have any further information on digestive enzymes and didn't know you could buy alkaline water, I am very acidic but doctors don't seem to test women or be concerned about whether someone is too acidic creating the environment for nfections to flourish. Our water has chlorine in it, do we have any hope do you think.

problem with foods is now an ongoing issue, bowel and stomach issues, low fibre intake etc.  I now have OBBG fibre powder 22% Betaglucan highest possible fibre twice a day made in Sweden.  There is also Betaglucare you can buy online which is also high in fibre.

thanks for sharing your story, I think with more advocacy and reporting of LS it might get more attention, hope you have a good dermatologist or specialist that is fairly fluent with LS. Have a look also online at Lichen Sclerosis Yahoo group, biggest LS site of information and sufferers to date.

take care

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Hi Andrea and Sarah--While I don't have but a moment right now to join you in posting my long story, I wanted to express appreciation to Andrea and then to Sarah for generously sharing your stories. I also share many of your experiences and found it so interesting to read your posts.  Thank you for taking the time to write and please know that there are others who have had similar experiences and who profit from hearing about what you have gone through!  --Suzanne

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Gosh Andrea , I could hardly believe my eyes when I read your post! It could have been my case history! I am 67 years old and I am sure I have had LS for years though I was only diagnosed in July 2014, but what intersted me most was your mention of exposure to chlorine. I have been an aqua-aerobibcs fanatic for the past 15 years - in the chlorine swimming pool up to 4 times a week for at least an hour at a time. I have often wondered whethet the chlorine over a  number of years could have be part of the LS problem although I have had atrophic vaginitis for years. I was diagnosed with breast cancer in 1997 so HRT was taboo. I have been in remission for many years but aqua had become my "soul food" in the first few years after the operation to the remove the cancerous lump and continued to be my "comfort zone" over the years. After using Dermovate since October combined with copious amounts of estrogen vaginal cream over the past 3 months I am feeling much more comfortable. I am struggling to find an alternative to aqua but my 2015 resolution is to try yoga. !

Following advice from fellow LS friends on this site , I have cut out sugar and wheat altogether. This has caused me to lose too much weight and I am looking very drawn and thin - but rather that than burning, burning , burning!

Wishing you a smiling 2015!

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Hi Sarah. How awful to have all that bleeding when you were so young and not know why. I'm glad you found that women's health clinic.

I know LS is supposed to be a rare disease, not much research, so there's nothing to treat it with except cortisone which has a bad rap of its own.

I'm in Ontario, Canada, which is a very large province with only two dermatologists that treat LS, and both are about to retire! Mine is handing off to gynecologists, but really the level of knowledge is kind of pathetic. I'm happy I have an excellent alternative practitioner who's a GP and a homeopath, who's done some good research on LS of his own, who trusts my research and my sense of my own body. He encourages me to experiment. He says we live with LS 24/7; we know more about it than anybody. Well, yeah.....

I'm lucky not to have internal itch. When I get external itch, soaking in warm water twice a day (I fill a plastic tub in my bathtub) is soothing. I listen to mindfulness meditation tapes while I'm doing this....can't believe I'm saying this online........whatever works! In between soaks if I need it, it was recommended I use coconut oil. You need to wait for the effect sometimes. It might get itchier for a minute or two but then the itch goes away. You can  use as much of that as you like. It's neutral, apparently.

Digestive enzymes. Products may be different where you are, but AOR brand works for me. I've found not to buy the cheapest brand - middle of the road usually works. One before breakfast and snacks, two before lunch and dinner, more if it's a heavy meal, but that's me. A nutritionist might know better for you. Alkaline water I get from my well! But maybe you can rent those stand-up cannisters where you are. At least try for no chlorine, even if it's not alkaline. I drink at least three litres a day. Clear tea, coffee, lemonade don't count. Lots of good water clears the system according to my good doctor.

The latest fibre I've taken is ground flax seed. I read somewhere on line that that's one of the healthiest things you can take for your gut. 

Mainstream vs alternative doctors. Yikes! What a story. Mainstream doctors in this country get minimal training in diet. About 3 months after I went on my restricted diet, I went to the dentist. The hygienist looked in my mouth (I'd had bleeding gums) and said, Wow. What are you doing differently? Your tissues are so much healthier looking! So I told him. He actually called in the dentist to have a look. Diet!! I figure vulvar tissue can't be that much different from mouth tissue. Meanwhile, the gynecologists at Women's College (mainstream doctors at the most prestigious women's hospital in Ontario) poo-pooh diet completely. It gives me such a head-ache!!!!

I can tell you a happy story around gut. In 2004 I had my first colonoscopy - no polyps but I did have diverticulosis. In 2014 I had another procedure. No polyps or diverticulosis. I went online and found they treat diverticulosis with antibiotics but I haven't taken any in ten years! So I put my faith in food - best drug around.

I will check out the Yahoo group. Thanks for that.

Great to meet up with you.

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Swimming is the best, imo. I've been doing it since I was a kid and everything relaxes for me - body, mind. Yoga is good too, and mindfulness meditation also. There's a man who brought M-M to mainstream medicine in the late 70s for people suffering physical pain and depressions. They built a huge clinic attached to a major hospital in the states around the treatment and now it's recognized world-wide. His name is Jon Kabat-Zinn and he offers meditations on-line but you can also buy tapes and get books at the library. (As a new meditator I'm not supposed to be promoting to other people, I'm supposed to be doing it, but I can't help it. It works for me and this is a forum for sharing)

All the best!

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Most interesting to read your story.  Good to read that the alkaline diet worked for you as well.  I experience it in a very similar way.  

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Hi Andrea,  Reading your post and others on here I am begining to detect a theme running through.  If i just spend a few minutes giving my 'life' history.  In my teens I suffered with a form of psoriosis which would flare up at times of stress but this seemed to subside in later life.  However, my periods were always heavy and lasted 7 days.  At around the age of 18 I realised I had an intollerance to cheese as it gave me blinding headaches and dizzyness.   At this time alergies to food of course were not high in the media.  I had two forceps deliveries for my boys and suffered extreme scaring.  My third child, a daughter, was a normal delivery with a small tear not stitched.  I suffered with hayfever from the age of around 18  which eased following the bith of my first child but soon resumed. I was sterilised following the birth of my third child at 31 yrs via laparoscapy and both stitches became inflamed and infected.  My periods became very heavy following this and 3 yrs later I had a hysterectomy.  All was well until about 4 weeks later when my scar flared up and absesses developed along the length of it.  I was on anti biotics for 3 months and lost 2 stone in weight, bringing my weight down to under 8 stone.  The hospital consultant said I was alergic to the soluble internal stitches and my body had rejected them.  I developed asthma at around 35yrs which was quite severe.  I also had intermitent issues with my bowel which I reported to my GP on several occasions.  I would suffer terrible cramps and need to rush to the toilet most mornings. Stool samples would be sent off for analysis of infection but always came back clear.  I found I always felt worse when away from home on holdiays or special days out.  I would develop diarrhoea very quickly which would last at least 24hrs.  I put it down to change in water, in fact anything to make sense of it.  Then one day my son said he had heard giving up dairy was good for asthma sufferers, as he also suffered with asthma at that time he asked me to join him in the trial for a week.  I reluctantly agreed, as nothing was know of this really then (30 years ago).  I gave up and drank soya milk, on the third day I realise not only was my asthma improved but all my bowel issues had gone.  Everything fell into place, speacial days out involved cream cakes or deserts etc. I went back to my GP and told him of my findings and all he could say was 'oh really'. I have been off diary ever since.  As time has gone by my stomach began to play up again around 10 years later the bloating got worse again,  I tried various remedies but nothing helped.  I then spoke to my new GP about this (a lady) who said women over 40 often have issues with bread.  I gave up bread... this helped but didn't stop the problem.  I had a very bad flare up one day which found me in A & E and was diagnosed with diverticulitus,  the hospital wanted me to stay in and see the surgeon the next day.  Rightly or wrongly I refused and took the antibiotics home.  I felt it was way too soon to start thinking of cutting bits of my bowel away.  This was around 5 years ago and I still have all my bowel!!.  I began to realise alcohol was upsetting me and also my favourite snack of marmite ( you love it or you hate it) I then made the connection of Yeast.  I also avoid spices and greasy and processed foods.  I too have suffered with  Thrush for many years and have self prescrived over the counter medication,  this always went hand in hand with UTI which I also self prescribed as I would have been at the doctors every few weeks.  I was at the stage where I was never without the necessary medication so I was ready for the inevitable flare up. On the occasions when I have presented at the GP with it LS has not been suggested, in fact often I wasn't even examined, just given a prescription, until last year. The sypmtoms certainly became less frequent after giving up Yeast products.  So here we are,  I am lactose intollerant, can't eat yeast products or spices.  I am predisposed to alergies such as hayfever and asthma, and have a history of psoriosis, thrush and UTIs.  The question was raised on here about if our Mother's suffered with this in silence.  I would say definately yes in respect of mine.  Looking back she always had stomach issues and was given various tablets and potions by the GPs over the years but continued to suffer until she died of alzheimer's 5 years ago.  She and my Father had separate bedrooms as soon as my brother and I left home.  My Father was very upset about this but my Mother would never speak of it.  I now wonder if she suffered as we do but couldn't tell anyone.   I'm sorry I have gone on a bit here, but I just kept remembering differenct issues that my be relevant to the history of our problem.  I am sure if we continue to share our knowledge we can at least bring this under control and hopefully get it recognised as a wider spread issue than it is currently so that more research may be done. 

Wishing you all good luck and improved health in 2015 

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Hi AZM,  I am  63 it would appear we were diagnosed at about the same time.  I am suffering with sleepless nights at the moment with worrying about many things.  I realise this isn't helping me so will try the Yoga,  I did this very many years ago and will make time for it again. I love dancing and this is my 'release' from worries, but when I perspire I find this makes me very sore and the symptoms worsen.  I only drink water when I dance (alcohol is off the menu) but wonder if this is my body being acidid.  I am trying to give up sugar at the moment ( very difficult in my tea) but it's got to be better than having the burning.  Good luck to you and keep posting.

 

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Hi Andrea.  very interested to read this post,  I have just posted my 'life history'  which includes my diagnosis of diverticulosis a few years ago.  I agree with you, diet is the way forward,  we must look at our bodies and find what is right. Everything needs the right conditions to grow and that includes bad things (LS) so we must remove what it feeds on.  Please keep posting your experiences and ideas, I am determined to get this under control.  Thank you x

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Rosalind, thank you so much for sharing your history with us.  Indeed, many things connecting with other people here, including myself.  Your poor mother had to carry this suffering all by herself.  We are so lucky that we can share with others.  It is a big step already.  And by sharing we have figured out a lot of things, making living with LS more manageable.  

Onwards to healing forever from LS!

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Hi Rosalind,

I'll respond to your message interspersed in italics:

giving up dairy was good for asthma sufferers

dairy causes inflammation and mucus, according to all the natural health gurus I've ever explored in magazines, online, on TV.... 

I went back to my GP and told him of my findings and all he could say was 'oh really'.

This business with GPs is so distressing. They have nothing to offer us except drugs if we reach the stage of major disease, and yet they have no problem running down proactive practises offered by "alternative" practitioners that actually work!! That's a major problem if their job is to help patients and "cause no harm".

So here we are,  I am lactose intollerant, can't eat yeast products or spices.  I am predisposed to alergies such as hayfever and asthma, and have a history of psoriosis, thrush and UTIs.  

....and you found that all out by yourself with less than no help from the mainstream medical profession. Sorry to go on and on, but being 66 and having survived the system, I happen to know they've earned the cynicism. Imo what they need to do is incorporate *alternative* practices, not fight them - for the good of their patients.

My Mom said I was born with a cold (Dec 21 - right in season!), I always had allergies, and I had asthma as a child but "grew out of it" - (hah! )As an adult, dairy allergy/sensitivity eventually caused awful gas problems of the horribly stinky variety, and I expect excess gas was the source of my diverticulitis because gas would expand the bowels and cause splits where there was inflammation.....I know my Mom didn't go through any of this, so there wasn't a genetic component in this for me.

You're so right about sharing this info. Going to a doctor as one person and saying, "This is my experience" is one thing. Going in with a ream of similar testimonials from other LS sufferers is another. If they're so inclined, maybe they can use our info to find a cure for this nasty condition.

So thanks for tying all these thoughts together. Brilliant! 

 

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Supported through the people on this forum, I felt strong enough to share some of our findings with my GP and my specialist.  Both were actually interested in knowing everything about it.  And what's more - they will pass our findings on to other patients with LS.  How cool is that.  

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Way cool.

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Hi Andrea

I find these posts quite alarming in that we all seem to be LS sufferers but more noticeable, we seem to have same or similar other medical problems.

I have been reporting bowel problems for years, have had 3 colonscopies, 1 sigmoidoscopy, the only finding was Diverticulosos, no treatment offered. My mother had Diverticulitis, not sure what the difference is but was told Diverticulitis is more serious. Obvious there is some genetic link.

I also have chronic Sinusitis and have to use multiple sprays which dont help that much. With Sinusitis you have so much build up of mucous that it affects my voice and are forever trying to clear my throat to no avail.  Dairy just makes the mucous so much worse, ive since swapped to lactose freemilk, zymill brand. Helps somewhat but still with bowel issues continue to have constant gas and bloating problems and passing bowel movements has become probmatic .  

How can LS sufferers have any sort of nornal sex life with all these associated  conditions as well.

 I now get regular bloods taken also to test my ESR that shows any inflammation occuring in the body. Normal ESR is between 0-20, mine is 70 and even though i report chronic inflammation in the buttochs; nothing gets explored further.

Always acidic, UTIs, symptoms of thrush, bowel issues, stomach issues, this damn LS which is auto immune condition, disease and ongoing Psoriasis of the scalp all drive me crazy, another auto immune condition perhaps?  

So apart ftom treating my LS with steroids now having to use daily Elocon lotion which is also a steroid on the crown of my scalp daily.

Skin conditions/diseases, doctors need to be more aware of people with auto immune conditions.

terrible conditions we have where no cure currently exists just temporary management, hopefully things will change. I am now under a specialist in womens health and she is female.

Bye

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Hi Hanny and Andrea

This is wonderful news that you have been listened to.  I have a follow up appointment with my GP tomorrow and will do the same and report back here.  Where are you both from? I am in Bedfordshire England. It will be interesting to see how this is recieved by the medical profession across England and the globe .  knowing we have found this link is making me feel much more positive for a good outcome of at least keeping this under control and being able to deal with flare ups.  thank you all on here for sharing biggrin

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Hi Sarah,  bless you, you are having a rough time.  I know what you mean with the sinus issues, I wake every morning with blinding headaches due to this also.  I read with interest your information on ESR,  I must confess I don;t know what this is.  Can you give me more info please.  I become inflamed around the buttock area when I perspire and have just ordered some crotchless tights on line to see if this aids the issue.  I have tried stockings, but hold ups are way too worrying in case they slide and suspenders aren't comfortable all day at work.  I will report back on comfort factor.

good luck with your new female specialist 

 

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Thanks Rosalind.

I am not sure what ESR means in medical terms but it would be easy to find out online.

ESR blood test shows your doctor whether you have any inflammation in your body that is out of the normal range.

ESR test does NOT indicate to your doctor where the inflammation is only that it is occuring. This would be up to your treating doctor to investigate further.

With me i know where the inflammation is because i can feel it all the time, uncomfortable. I would say in my case that its related to certain food intolerances as have IBS also or i have inflammatory bowel disease.

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Hi sarah. thanks for the info. my docs dont seem to offer tests of this kind. i would welcome an acidity test.  good luck for 2015 

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Hi Rosalind

The standard blood test does not include ESR test but you can request that it be included.

In Australia you can get swab tester kits at the pharmacy to do yourself. I wpuld imagine that you could purchase them online also.  These kits come with a colour code strip like pool test strips and it tells ypu whether your too acidic, or alkaline and usually shows you the normal area.

from memory think there was information about what to do if too acidic.  There are certain types of foods you can eat to change the environment to stop certain infections from thriving.