LS experience

Women's health
1

My experience in a nutshell. A large one, nutshell that is.

1987 had a D&C, on follow up consultation reported that I had a sore "down there", no interest shown. Since then I have had, sporadically, what I assumed were cold sores in and around the area.

Last 2-3 yrs getting worse and felt more like paper cuts and also sore around back passage. Never thought to look, just kept hoping it would go away, which it mostly did.

Last year finally plucked up courage and visited GP, practice nurse and GP both though LS, prescribed Dermovate. 

Never heard of it Googled it SHOCK HORROR!! contorted myself to have a look and noticed a definite difference in my "architecture". Found this site and took great comfort from fellow sufferers.

Referred to gynaecologist Oct 2013 who said it wasn't LS, of course it was in remission when I went there, he said atrophy was natural to ageing, I'm 72.  

Still getting sores though, GP said treat them with Zovirax. I was also using Emu Oil to combat discomfort.

Bad flare up a few weeks ago back to GP, she said she thinks it is LS, did I want to see gynaecologist again, I said maybe a dermatologist would be better. She says the blister like sores are something else and has taken a swab, I also said I thought constipation was not helping the splits round back passage and she has decided I need a colonoscopy, I'm having that Christmas Eve. 

I am much more upset and stressed about the LS though, have started compulsively checking every day as I have noticed more loss in the last year. My GP was very reassuring telling me what to look for in case of the slight risk of cancer, she says my vulva looks healthy, it is a skin disease and does not go inside. She also said that you can use Dermovate for longer there than on other parts of the body.

I have looked at this site even when I thought I was okay and sympathised but now I am getting comfort in the comradeship, but WHY do we have to find our own treatment. I am trying the bicarbonate spray, very soothing and am better than I was a couple of weeks ago, and being referred to a dermatologist.

Thank you one and all, sorry for long screed.

2

I go to a vulval dermatologist. I'd been to several Gynaes who failed to diagnose it and then finally got here. It's the most common condition in this clinic. Can you find out if there is one in your area?

3

Like you I am glad I found this website. It has certainly helped me realise I'm not alone and I have had more information and help here than sitting in my gyno's chair. My dermatologist has been a huge help. I also had anal fissures and constipation bought on by being worried about tearing more. I had an op to rectify and it went well. I increased my fibre and drank lots more water which all helps. I still supplement with Metamucil as I'm paranoid about getting another tear. I've also am seeing success with bi carb spritzing after each loo visit. 

Good of luck with your op Christmas Eve - it won't be as bad as you think!

4

Pollyanne, so sorry to read this. It has taken me 2 years to get diagnosed. I even had a biopsy 2 years ago after my GP said it looked like LS and started treating it with dermavate. That came back negative. But you just know when something isnt right and yes it is just really embrassing to talk to people about. The paper cuts are the worse. I have used the emuaid which is good, another thing inbetween attacks is have olive oil in a spray and use that. It keep sthe area supple and stops it drying out.

Stay strong, you are not alone.

x

5

I can try, are you in UK? We don't have regular gynaes as they seem to have in America, we only see them when having babies or problems.

6

Our local hospital site says vulval problems are covered by the dermatology dept, so let's hope I get someone at fait with this area.

7

Meant to say I live in the uk and the gynicologest that I saw referred me on to a cancer special gynicologest who deals with this all the time.reassuring to know if it turns to cancer he will know!

does anyone else suffer from inching and rashes elsewhere on the body trunk?

8

Hi, sorry you had to join us...the colonoscopy preparation is the worst part of having a colonoscopy, especially for someone with our condition.  I would just make sure you put plenty of protective crearm or vasaline around your undercarriage and your back passage as it can become very very sore.  Let us know how you get on! 

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Glad you found 'us'.  We learn so much from each other.  Though it is sad that we indeed have to invent much ourselves.  

Happy to hear that you find comfort by using bicarb rinse.  I would add -  cover the area with coconut oil after that, for extra comfort to the skin.  

Glad to hear also that you're doing better already.  Keep in touch!

10

Thanks all for your support. My GP rang this afternoon to say the swab showed herpes simplex, which is the cold sore virus, not genital herpes, so that is one result and sort of good news, and I'm on the list for a dermatologist.

i do suffer from cold sores and also have nearly all my life had itches and spots, mostly above the waist!

 

11

Hi Pollyanne - Have been thinking of you over the holiday week.  Surely hope your Christmas Eve Colonoscopy went well.  I have to have on in the new year as it seems I have a hemorroid as well as the LS.  I work constantly at keeping 'things moving' - so much so that I yearn for the days of my old normal diet and routine.  How easy life was then.  My GP treated me for almost a year for 'anal fissure', but then sent me to a Obgyn who diagnosed LS.  With her recommended treatment by Clobetasol twice a week, I can keep the LS at bay.  But if I neglect my diet and greens and fibre and metamucil and probiotics and eat anything starchy, I have stinging and bleeding.  So that is probably the hemorroid and I don't know if that can be fixed.  The colonoscopy should tell me something, I guess, but am not looking forward to it as the whole perineal area is affected by the LS.

Please let us know how it all went for you.  Best of luck in your post op recovery!

12

Hi Helen and all, thanks for your thoughts, I gave myself an LS free Christmas and tried not to think about it too much or look obsessively every day.

The colonoscopy was normal thank goodness, I did seem to feel it more than others say they did but he did say that my bowel was stiffened from my hysterectomy, this could also explain the discomfort I get ( my thoughts he didn't say anything) Also been told I have 2 haemorrhoids! I took advice about prep for colonoscopy, used Sudocrem and moist toilet wipes.

LS still much the same, not sore but white and pearly, no more loss but will keep up the Dermovate for now, as well as bicarbonate and Emu Oil. I am suffering from 2 herpes sores though, I comfort myself that although sore they will go away and not cause damage in the long term. In retrospect I think a lot of my soreness must have been from this.

best of luck for your test Helen and Happy New Year to all.

13

Hello Pollyanne-  could you fill me in on how you are getting on with the LS and Hemorroids?  My gp thinks it is the combo of both conditions that results in bleeding after a large, firmer BM.  I am now to have a sigmoidoscopy rather than a colonoscopy to determine if I do indeed have internal hemorroids.  I am afraid it will hurt as at best my perineal are is irritated and tender.  Did you have any anesthetic for your colonoscopy?  

Also once you were found to have the hemorrhoids, how did they treat them?  Do you just try to avoid their bleeding by regulating your diet or can something actually be done so that you can eat normally?  I have heard of internal ones being 'banded' and then they fall off.  

If nothing can be done to fix them, how are we supposed to manage? Along with LS it is pretty depressing at times.

 

14

Hi Helen and all. Sorry you, Helen, are having a bad time of it. When he mentioned hemaroids( spelling?) it was just as an aside and no treatment was offered. In the last 4 or5 months I have been relatively clear, had a couple of sores treated successfully  with Zovirax and now look pink and healthy below, even if a bit diminished! I have learnt to recognise the hemaroids soreness for what it is, as you say after being a bit constipated, so that has taken some worry off me. I use Emu oil if I feel dry or sore and that helps.

i have a dermatologist appointment for May 24th and thought about cancelling but have decided to go and hopefully get a bit more info and input about the condition.

i would not like to say I am cured but definitely feel I'm " in remission" at the moment.

i did not have anaesthetic as such, just a relaxant injection for colonoscopy.

i have not greatly changed my diet, too weak willed, but try to drink a litre of water a day on top of all other liquids.

best of luck for you tests, let us know how you get on. Cheers V.

15

Hi all, I thought that I would update after my dermatologist appointment a couple of weeks ago.

I saw a lovely lady,a vulva specialist, and although there was not much LS activity at the time she confirmed that I have it, she could see the signs. She told me I was managing it well and to keep on as I was but to have a check every year.

So I continue to use dermovate when actually sore and Emu or Coconut oil when feeling dry. The consultant gave me a couple of samples of wash gel and ointment which seem pretty good.

if any of you are in the Shropshire area I would recommend her highly.

I wish you all the best and shall keep my eye on the forum.

16

PS when I was telling the consultant how I managed the LS I told her I used Aqueous Cream and she said that it had been outlawed by dermatologists because of something it contains, can't remember what it was. She did say that if I was using it with no adverse reactions not to worry