does anyone on this wonderful forum also have Lichen Sclerosis?
My Mum (85) is really suffering, she has followed all guidelines for 20+ years, had biopsies, used steroids as directed and special non soap washes. She isn’t diagnosed with AIT, but I inherited it from somewhere and she had a form of hepatitis as a teenager. My older sister too so I’m just joining the dots. GP just told her she has an ulcer/blister where they took the last biopsy from her vulva and she’s very worried it might be cancer. GP is making yet another referral.
Are there any particular lifestyle or home care changes you would recommend that made life more comfortable?
Looking for advice, she is pretty much sugar free after a Type 2 self treatment that brought her figures back under range. Was quite a drinker back in the day but very little alcohol these days. She has struggled with incontinence since her 40s and pride meant she used panty liners and not incontinence pads until recently. Which I think may have contributed. GP is trying her on a tablet that will help her hold the flow, warnings of oral dryness and constipation are worrying her. I will suggest she gets blood tests for AIT and vitamins too.
Does following an auto immune diet help anyone? Dairy? Gluten? Vitamin D? I must have asked her to test her vitamin D about a hundred times but she doesn’t get around to it.
Just hoping to make her more comfortable
thanks 🌱
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My sister has LS & one specialist recommended applying organic coconut oil every time she uses the bathroom. When flares are particularly bad she does use steroid cream/ Borox. Improving Vit D levels also helped, plus anti inflammatory supplements- turmeric/ ginger/ montmorency cherry are her ‘go to’ choices. She doesn’t have AIT; it seems to be just me in my family with thyroid issues.
Thank you, Yes she had all HRT offered through all those decades and uses estrogen cream still but when using steroids the two don’t like each other and sting so she has always struggled to find the balance when needing both.
Has she asked about a ring pessary to support her uterus and bladder? No drugs, just a silicone support, which is not felt and can stay inplce for a long time. No pads needed then! OR surgery!
I suggested the Intermediate Gynae clinic to the sister of a friend, who is in her late 50's and suffered incontinence since a difficult birth 30+ years ago and spent a fortune pads. She was dreading going on a Safari to Africa, and saw someone before she went, at my suggestion and she said it was a revelation! No problems at all and no extra suitcase full of pads needed!! She has a new lease of life!
hello, I have had lichen sclerosis since childhood and I use Dermovate cream. Just wash with E45 shower in the shower and that is it. I also have Fibromyalgia and am recently diagnosed with subclinical thyroid. I have for many years been very conscious what I ingest and use and the lichen is generally under control with occasional flares rather than constant . I really don’t know what I have done that actually really helped, possibly all of it 🤷♀️ as I was recently told by a dr that maybe I’m being a little over strict, but I have only recently started to eat the occasional (ie a month or two apart) cake or desert. I found out years ago that sugar makes my body swell and causes a lot of other issues so until recently I cut it out completely and I mean completely. I made everything I ate for years so I was very thorough. I wonder if this was the key.
Hi Kimmi01, sorry to intrude on the thread, but I think that I have a similar sugar sensitivity, so can I check whether you mean when you said that you have cut sugar out completely and what you don’t eat? For example, have you cut out sweet vegetables and fruit and found that this has helped?
Hello Ruth Nelson. Thanks for your interest, and I’ll be interested to ask what you eat and your experiences too. 😁 I did initially cut out all sugar including sweet fruit and veg but I do eat some now. Berries with goat yoghurt and an occasional satsuma (rare but I love them). I did used to include pea protein and cacao and other health powders into a smoothie with greens and goat milk/yoghurt daily for breakfast then make meals out of basic ingredients- chicken and fish, rice, I find potatoes aren’t good for me, I have gluten free pasta, basically if it could spike sugar in any way - I completely avoided it. It was easy for me as I was very ill and housebound for a while, although it was an huge effort for me to make anything. Now I make sure that 80% of my diet is simple basic food. I do also know that Onions are particularly bad for my digestive system (think that’s a different issue though) I don’t eat bread and avoid anything with flour, sugar and anything too starchy. It has helped me a lot but I know that it’s difficult to fit this into a normal lifestyle. I do have a square of an 85% coca chocolate every now and then now and I love that I seem to tolerate that ok. Have you found anything that helps you?
Thanks Kimmi, I am just trying to figure this out; so many things seem to bring on the tingling that I am not sure if there’s much left for me to eat, particularly as I don’t eat meat. But I think that sugar seems to be a culprit, and possibly some sorts of spice.. I am trying to up fruit and veg in my quest to lose some weight, but I think that this is exacerbating the tingling.
Yes I know, it is very difficult to plan meals or even find things you can eat . I think it’s a case of what works for you and listening to your body for the hours/days after eating. I had to keep a log of everything to work some things out. I do wonder how us humans have reached the stage where foods are actively making us ill. So im eating just the basic ingredients- avoiding anything that has any chemicals, e numbers, and onions 🤣😂. It’s a full time job but it does get easier once you realise what you can and can’t eat. Good luck with your journey x
Just saying me too on sugar 🙋🏽♀️ the more I read the more I realise it’s right for me. I did the Zoe thing too. I don’t react well after anything sugary even bananas 🌱
I have LS along with a list of other ailments: adrenal insufficiency, ME/CFS, hypothyroidism, chronic UTI, etc. My mum has had all kinds of diagnosed and undiagnosed serious medical stuff among which also hepatitis (more than once even). Vague conditions run in her family (like ME/CFS) and my dad had Graves'.
I cannot advise you anything regarding food, I think everyone is different and have to work ou what works best for them. Trial and error and a lot of patience I'm afraid. Of course sugar and alcohol are bit NOs but I would not leave out too much at once, because of her age.
Maybe you could arrange to see a dietician and try a FODMAP diet under supervision? If your mother would be up for it because it's very severe.
If you think she'd be open to TCM (traditional Chinese medicine), it might help. Mazin Al-Khafaji is an authority on dermatology and TCM. His clinic is in Brighton and Hove, but if that location isn't convenient, he's trained many practitioners in the UK and there may be someone in her area who could help.
What a good idea, before her knee op years ago it was Chinese medicine that kept her moving until she was old enough to get a replacement 🌱 I’ll mention it thanks so much 🌱
Brilliant, then she may be receptive. My hypothyroidism was diagnosed when I presented with skin symptoms. Conventional treatment didn't really help, an elimination diet showed a small association with sugar, but TCM made a huge difference for me. You've received some good suggestions, so hopefully one or more things will help.
This must be awful for your poor mum. I have lichen sclerosis too and the main thing which has kept it - mostly - at bay is avoiding dairy. I was gluten free for several years and still having symptoms so decided to cut out dairy. This worked like magic for me, it may be worth trying for your mum. Other than cutting out gluten and dairy, I eat a whole range of foods. I do keep alcohol to a minimum. I hope you manage to find some answers for your mum.
I was recently diagnosed with this and it's very uncomfortable. Think I may have had this for quite a while but didn't realise. It must be terrible for your poor mum.
I don't have autoimmune thyroid disease/Hashimotos just prescribed Levothyroxine for tiredness after partial thyroidectomy. I have another skin problem still not diagnosed but possibly granuloma annulare. Dairy free for many years but not gluten free.
I'm reading the replies to your post with much interest. I really struggle with applying the steroid cream as I'm always hot and itchy everywhere.
note my primary diagnosis is Adult Onset Stills Disease which for me manifests as rheumatoid disease.
Stills is AI and I have other associated conditions albeit mildly .Diagnosed aged 17 now 62 and recently told by GP I have subclinical thyroid issues hence my presence here.
I’ve had urinary weakness all my life and plagued with thrush/cystitis/UTIs etc eventually being diagnosed as LS. Since menopause the weakness has become much worse and I couldn’t tolerate the pessaries or gels but now use HRT patches.
I have dermovate for LS which keeps it at bay and avoid foods that seem to trigger it but it’s hard to tell. Stress is a big contributor for me. Sorry I can’t offer more useful experience except to say the obvious, loose cotton clothes have helped. I wish your Mum better days.
Quick question Stills Mum is keen to find out what your trigger foods are, she is a home cooked kinda gal, grows her own veg, makes her own bread etc. She doesn't do well with sweet peppers or strawberries but hasn't identified any others. If you have time to share she'd be interested to compare. Thanks 🌱
Sorry not had time to read all replies so apologies if I’m repeating.l things.
There is a definite predisposed genetic link with Lichen sclerosis (LS) and Autoimmune Thyroid Hashimoto’s and a few others auto-immune diseases eg coeliac disease…I have just been diagnosed myself in October after an appalling situation…I will come on to this in a bit as did briefly read someone mentioning blood sugar… and feel it’s important to say this.
This is what my oncologist gynaecologist recommends and what I have written in front of me from consultation.
About 3% of LS can become cancerous and annually this condition requires examination… first treatment is a steroid base cream to be applied every day twice a day for 6wks alongside a aqueous cream this is to tackle problem head on and thereafter twice a week… do not wash with soap like perfumed products these will exacerbate the problem… this is what was recommended to me.
I wanted to add this and apologies it’s a long story of my situation …I had bought up my itching to attention in 2020 just prior to covid… and GPs were seeing you… I’m perimenopausal and my blood sugar is higher end of normal according to NHS guidelines … I am aware blood sugar levels can cause excessive itching and this is what I was told without offering to look at my condition, so for 3yrs struggling on with soreness various creams tried but nothing then another GP didn’t examine last year said it’s perimenopausal symptoms upped my hrt and all well and good but think need examination at this point a lump had appeared and they knew I was there face to face but never examined … if you google this alarm bells go off but not in my GPs surgery after mentioning this to 2 GPs … however I’ve had lower back and got pelvic pain for best part of 10yrs albeit intermittently in first 6 yrs but low grade all the time now with some debilitating pain bouts which drive me to out of hours even A&E. I was sent for referrals but only due to bleeding on hrt for just ultrasound my third in 3yrs but endometrium normal on first but cyst which later on repeat ultrasound disappeared but on second situation a slightly thicker endometrium and best get biopsy now so was put on 2WW cancer referral pathway - you aren’t examined just sonographer doing ultrasound … I told my GP I would prefer to use my health insurance giving me option for general anaesthetic as these things are done under local via NHS… I’m already in much pain and no way could keep still for any length of time or be put in awkward position for this examination and biopsies …but was advised this is definitely quicker route no private referral … this route was a joke my actual appointment to be seen would of been just over 5wks, my scans were viewed by gynaecologists and deemed non urgent within 2wks… and maybe with cases they have in front justified … but I asked to use my insurance but my GP stalled for 2more weeks that’s a month her 2wks was obviously not quicker route for me…A whole week trying to get a letter of referral… I just decided to ring my insurance as I had hospital letter for treatment as reference this isn’t me just randomly saying a problem…. They gave me authorisation there and then. I went on Nuffield and looked and found consultant for what I was expecting was cancer by now so picked oncology gynaecologist and rang secretary she was appalled that never been seen with more complicating symptoms had arisen to at least put mind at rest and still not seen and she said she’d get the consultant to ring me his surgery was just finishing… he called me 10 mins after, took my details and saw me 30 minutes later I had thorough examination a smear taken I had LS and sebaceous cyst nothing to worry and booked me in for Hysteroscopy under general anaesthetic 2days later I had D&C 2 polyps removed and coil fitted as 3yrs ago on ultrasound it was said I had adenomyosis, GP wasn’t interested ruled it out as nothing. The coil has lessened the bleeds and pain a bit better but not gone so I had pelvic ultrasound in January with buscopan to slow things down more so better pictures… It showed adenomyosis and additional endometriosis on my bowel and in pelvic cavity most likely my problems stem from this, I am now on trial of Decapeptyl injection to reduce my oestrogen etc only 5 days in…my GP was right it wasn’t serious but it wasn’t sugar related either and I would still be no wiser what is up if I hadn’t took things into my own hands … absolutely appalling that you have a condition you can actually see, but don’t get seen.
My story could have been a lot worse… do not leave things get second or third opinion if possible do as I did see gynaecologists for peace of mind at least.
Apologies again for extremely long post but this condition gets put off talking about and possibly always being something else it’s best to make sure don’t speculate.
Edited *Re diet I’m obviously coeliac no gluten and hasn’t stopped me getting it… I’m not dairy free though…I haven’t found I get any flare ups when eating anything, but wearing pads for bleeding so much, definitely doesn’t help, so can only think of barrier creams to be if use/comfort.
Thanks for sharing and after 13 months of issues being investigated by gastroscopy, colonoscopy, scan and gynaecology consultation to rule out cancer I’m pleased to say nothing was found. During those months my dr saw me once and did no physical exam just referrals . However i am still not my usual self and having decided this was my new normal and just put up with it you’ve made me reconsider. I will call Dr again this month. Wishing you good days.
Oh boy…it’s a trudge isn’t it but hang on in there.
I actually had been told it’s got to be mechanical as my pain was so vague and not all the time, it started off with severe bouts every few months knocking me off my feet for weeks then almost lower grade all the time with fluctuating pain and if I hadn’t started hrt … the abnormal bleeds would not of worried my GP as I have had abnormal bleeds since a year after having my daughter. 1995 🙄 all I got was an extra smear to rule out infection. I just gave up bothering and put up with it. The alarm bells went off as they read from screen and by now my age determined a 2WW pathway as overweight over 50 and on HRT and still bleeding after a year. Previously had multiple full vertebrae scans even more lower with pelvis hips looked at too…zilch but age related degenerative conditions but nothing too bad. The gynaecologist ran pelvic mri - relevant to his area as previously orthopaedic pelvic scan are only looking at bones etc. You have a cage like dome over the pelvic area and give intravenous buscopan part way though to slow bowel movement for better photo of the area this can pick up endometriosis and adenomyosis although my ultrasound picked adenomyosis up cysts too. A blood test and ultrasound isn’t adequate to pick up every thing even MRI misses it’s a very difficult condition to detect it can spreads, they think through lymphatic system so endometrial like adhesion can be anywhere in the body.
If your quality of life isn’t good and this “this is your normal” doesn’t sit well with you dig deeper. My GP says for some these things happen we never know what causes what and some get better on their own (more like live with it) but for some unfortunately we need to managed with medication or other things…I’m in the camp if don’t need something I won’t have it. Look at conditions you may already have and see if there’s something else that is in common eg Thyroid & coeliac or coeliac & type 1 diabetes… is there any cross over symptoms … unfortunately in my experience joining the dots doesn’t seem to happen often but you might get a GP that has seen this happen before and bingo.
They can’t tell you you haven’t got something without eliminating it so read up what can be done for areas of concern and try to get the relevant test… unfortunately it can take time and lots of dead ends and go down areas you think what on earth has that got to do with things, hang on in and persevere . You know your body better than GP or any other medical professional realistically at moment NHS seem to be more reliant on test results and to medicate a condition based on old tired tests, of which many were initially tested on men not women … that’s how I see it as we seem to have lost the what about getting to the root of the cause and prevent if we can… we have many reversible conditions but simply taking medication only masks it, it is getting you through the day which is all well and good until that doesn’t work and needs increasing worse still caused by another problem… we definitely need certain drugs in our life but we are moving away from prevention or treating the root cause, even if conditions are exacerbated by mental health there’s therapy unfortunately extremely long waits as with most things.
If you do seek external/private help in any field please make sure you check they have proper qualifications as I have heard of someone calling themselves a personal trainer and nutritionist just out of university but did a brief online course on top of a sport’s qualification and is clueless in some ways, you could read better advice online if look in the right place… gym related trainers doing these courses isn’t in my eyes a nutritionist, but there maybe some very good ones out there but calorie deficit malarkey doesn’t sit with me well.
We have poor quality food grown in fields not cared for due to mass production so chemicals enhance the crops via herbicides & pesticides our soils are depleted of nutrients so if you look at 50 years ago these nutritional content of crops was much superior but slower to grow less yield… but we throw away so much.
I feel in some areas we need to go back to basics.
I have AIT and Lichen Sclerosis. I think if you have one autoimmune disease then you're more likely to have another. Interestingly I've just joined a really good Facebook group for LS called "Lichen Sclerosus -sclerosis- UK Support Group For Women" and the other day someone asked how many of the members also had Hashimoto's, there were a lot of replies from women who have both. I've had LS for about 7 years and thought I'd found out everything I could about it but I've found so much useful information from this group, if your mum does Facebook then I would recommend she joins. It is private. I've found it very supportive which you need because it's horrible a horrible disease and not something you want to discuss with everyone.
I've read that there's anecdotal evidence that high oxalates in your diet can exacerbate LS. My first really bad flare up was when I went on an elimination diet (no gluten, no dairy) and as a result I was eating more oxalate rich food than usual. Quite a few gluten free flours such as buckwheat are high in oxalate and I was also eating a lot of spinach, tahini, chard etc. Now I don't do a particularly low oxalate diet but I try to avoid having a high amount eg if I eat spinach for lunch then I definitely don't have rhubarb the same day. There is a good article on one of the Coeliac websites (can't remember if it's UK or US) about gluten free flours and oxalates. The only other food that makes things a bit worse for me is chilli so I don't eat much of that. LS can make you more susceptible to cystitis as well so I avoid Prosecco, cava, champagne etc and I make sure I always have some D mannose (extract from Cranberry) in the house and I take this as soon as I think it might be coming on. It works well for me.
I'm quite anti Facebook too but there are a few things I find it helpful for. I can summarise the main lifestyle changes that seem to be advocated on the page:
Make sure you use the steroid regularly as recommended and an ointment form such as Dermovate ointment works better for many women than the cream form. I find as soon as I stop using it then the LS flares up.
Use an emollient such as Epiderm ointment or a barrier such as vaseline or coconut oil to protect from urine as this aggravates LS. You can also use a peri bottle to wash off after using the toilet.
Loose cotton underwear. Be careful what you wash them with and make sure they are well rinsed.
If you itch at night then try an oral antihistamine (one of the drowsy ones).
Oestrogen pessaries eg Vagifem - you can use this more frequently than the standard recommendation. I use it every other day.
epsom salts bath or sitz bath.
It's very apparent that everyone is different so it's a bit of trial and error to find your best steroid/ wash (cetraben seems popular)/ emollient or whatever.
Also it seems to be classified as a rare disease but actually a lot of women have it but it just isn't talked about.
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