New to LS - start here

How long have you had a diagnosis of LS? 2yrs

Age 34

Do you suspect that you have had this for much longer? Yes several years before diagnosis

Is it currently under control? No, hasn't been controlled since before i was diagnosed

When did the irritation start? 25?

Has the area always been irritable? Yes

Are you suffering a flare at the moment? Yes (Nov 15)

If so, can you attribute the cause to anything specific? No - although I've found a lump in the affected area

Do you suspect that other members of your family may have had/have LS? Yes, paternal auntie

Do you have any other skin conditions along with the LS? No

Describe your skin type: Light skinned

Do you suffer from an autoimmune disorder: currently being reviewed by specialist to rule out

Have you been tested for high cholesterol? No

Do you suffer from high blood pressure? No

Statins? No

Diet and exercise? Over weight but healthy

Do you suffer from high blood pressure? No

If so are you being treated for this? N/A

Do you suffer from low blood pressure? No

If so are you being treated for this? N/A

Do you suffer from anxiety? No

Have you taken steps to reduce your stress? N/A

If so what have you done?

Do you have a flare-up of LS if something is causing you stress? Yes

Have you had surgery related to LS? No

Biopsy: Yes, 4 vulva biopsies

Have you experienced other surgery? No

Episiotomy: No

Please list any of the prescribed topical creams you use currently

Dermovate

Emollients

Barrier creams: no

Alternative treatments: none

What sort of products do you avoid when cleaning the area? Soap, scents

When do you wash? First thing in morning & Before bed - if flare up then after work too

How do you dry yourself? Gently towel

Do you wash in hot or cold water? Warm

Do you dread having a poo? Yes What happens? Pain & bleeding followed by stinging & itchiness

Does pee sting you? Yes What do you do about it? Steer the flow of urine

What can you no longer wear? Tight pants, tight jeans

What do you now wear? Loose cotton panties, loose trousers (looser at home)

Do any foods seem to make the LS worse? None

Is this discomfort on already damaged skin? Yes, makes the area around the anus red and sore/itchy

I also have confirmed LS on my chest & sporadically throughout my upper torso

Currently miserable & attending specialists appts every 3 month due to severity

WOW you have done a lot of research.   I had itching till I nearly did my head in, in Spain you don't get medication for this complaint so I have had to try a few things to work, no sugar, being careful what I eat. etc. etc.

I am saying you don't get medication for this complaint, there are some ailments that the dr gives you a prescription but from then on you pay for it yourseves. So.... my one and only prescription was for Vagifen but cream.   When i went to the chemist for the same thing, she asked had I tried the tablets where you insert 2 a week.  So.... I know they are expensive but you probably in the UK get a continued prescription for Vagifem.  But here they are 9€ a box.  They work.  So far I dropped it down to 1 a week and I am so so glad it works. No itching now for 2/3 months,

 

I don't know what i had but I wasn't treated very well in the UK, the doctor kept on looking at intervals and couldn't say and there was no comment forthcoming. she gave me lots of different creams over the years when I was going ballistic with the itch,  none of them worked.   Unless you have had the itch, you can't explain to anyone how horrible it is.   no matter how clean I was, what I ate or drank etc. etc  I itched like hell  with whatever cream i had been prescribed at the time and it would go away in 3 days. but just came back.   I could go to the bathroom and get a piece of toilet paper and scratch the itch so that I was red roar.  The doctors are simply rubbish in the UK (as I have found out with 3 herniated discs)    And.... I have had it for years -probably well over 10 years  I suffered on and off and given different creams that i eventually gave up going to the doctors.   it was only in Spain that I was prescribed Vagifem pessaries and it eventually has worked  I am absolutely estatic.  I also thought it was man made fibre pants - everything went through my mind.

Pensioners here have to part pay their prescriptions but this medication is not even on part payment. You try and then have to buy it yourself. Yet i was down in Vit D and they gave me it like it was coming out of my ears.  I haven't a clue why this particular medication is not on the list for part payment. Once and thats it, if it works, you have to buy it yourself.

I can't think how you take it at the beginning, its very expensive to begin with -  something like 9€ a box and although it says 2 a week maintenance I have tried 1 a week and so far so good. When you think of 9€ into English pounds, its not bad at all. Thats what i keep on reminding myself lol. .  I have to say that I did miss one week and I just had a ting of an itch but it did go almost immediately once I took my pill.   I have gone through 2 boxes now continually. I haven't a clue what the doctor in spain said as a translator came with me -  it was because she speaks Valenciano but anyway it works.   Symptoms: Severe itching, redness, itchy vulva,  labia  clitoris, and actually inside as well I was red roar - I could feel the soreness inside me  because I actually thought it was something to do with a dropped womb cancer or something like that. You know how it is all sorts of things go through your mind.I also thought i had diabetes 

I didn't have any fusion, and to be quite honest I have been in tears because the itching was so bad. I'm 72 and remember when I first noticed that i had it and I had sat most of the day in a damp swimming costume on a beach in Greece.  Thats all I can tell you, sorry I'm sorry but I am trying to type quickly as I have 3 herniated discs and my back aches.

I hope that my story helps, and I would say go for it Vagifem is available in the UK but not the cream.  You can use the cream as a supplement but not as a one treatment.

Thank you so much, learning more and more every hour. I love women supporting women. I am 57 and menopausal. Have had itching for over a year, but blamed it on an external hemorroid, that looks ulcerated. Had my colonoscopy a few months ago and all was good. Saw my GYN in June, all was good. No one commented on the hemmorroid. I have been using a tube of 1% hydrocortisone on it. This past month while vacationing is when the itching became more than i could handle. Took a mirror and looked and was shocked to see 2 white spots on either cheek of my buttocks, extending to the hemmorroid. Saw my GYN again last week who biopsied it, called me this am with the definitive diagnosis.. Am to start betamethasone tomorrow. Pharmacy had to order it. ARRGGHHHH!

I cannot believe my luck in finding this site. Long story short - and brutally honest - I was sexually abused as a young child. I had PID before i got pregnant the first time. First marriage was a nightmare repeat of my childhood. Second marriage we celebrated 28 years this last September. We have five kids so that's five episiotomies and and an additional surgery to repair a bleeder they missed with the first birth. Never had a normal pap smear and was told during my fourth pregnancy I had cervical cancer but then that I didn't. Finally a hysterectomy in 2005 after years of fearing I was going to bleed to death during my periods. Sex has never been high on my priority list but my husband has been super understanding given my history and the fact that even with a good lubricant sex has been horribly painful for all of my adult life. So I ask myself how long I have actually had LS and why did it take me so long to find this group and realize I'm not losing my mind. Sorry if itTMI but I know that if I don't throw it all out there at once I won't be brave enough to put it out there in bits and pieces.

LS drove me mad, i think i may have got it through sitting all day in a wet swimsuit as I have had it for 20 years. I can honestly say that I was so sore and pain  I went to the drs and she suggested that I may be losing elasticity as I was that age!!! The medication is not on prescription in Spain so paid the 10€ for a box. It didn't work but it did reduce the itch.

Many more months went on and to get rid of it altogether I bought a box and instead of using the full recommended dose and halved it and so far have taken it now for 4 months and not an itch or soreness in sight.  I am so relieved  Vagifem I think is on prescription in the UK.  The dose I started on was 2 a week and then I reduced to 1 a week.  Fantastic

Hi I've just been diagnosed and am feeling extremely vulnerable... With hindsight, this gas been with me for sometime. Any help/advice appreciated