Confirmed diagnosis

Susie, it might be good to read a good number of the discussions on this site in order to learn that the medical world does not necessarily have all the answers.  Many of us LS sufferers have figured out that in addition to Glob it makes life more comfortable when we use items like coconut oil and emu oil in between the Glob.  

It is also helpful to learn that cutting out sugar, alchol, gluten, some dairy (my LS acts up when I eat cheese)  makes living with LS again easier.  

Then there is the individual support - I rinse after every bathroom visit with a bottle wih warm water in which three pinches of baking soda.  (It changes the pH balans, which somehow discourages LS)  Every other day I sit in a baking soda bath. (one third of a cup)  I've seen other skin diseases on hands and feet also disappear.  

All in all, it is perhaps good to know that LS requires constant care, always.  

Ask for a second opinion! Your gynaecologist is not up to speed with current thinking. He is back in the 90's when no one seemed to know what to do so did very little, except patting your hand and saying there there!

there are vulval clinics around and theRoyal Free inLondon seem to be thinking of ways to treat LS. Bristol has a vulval clinic and the Society of Dermatologists are currently analysing a research questioaire  sent out to sufferers withLS. 

I gave my GP and the nurses in the practice the webinar link with print outs I screen shot so they were better informed. Perhaps you should drop the gynae a note with the web address too?

where in the Uk are you?

most of us are  either following the advice given in the  webinar or going down the alternative route... There is another section on  this site. I will go down the route where I know the standard of basic knowledge the practitioners should have, ie medical qualification, I have only the one body and don't want to put it in the hands of people whose qualifications I have no understanding. However I have worked with highly qualified eminent medics and set my standards accordingly, others may not have been so fortunate. good luck and if I were you I would start a diary, of food and fluid intake, a mood diary, and what oitments etc I am applying. What the structure looks like , perhaps even taking photos with a camera NOT a phone or iPad, which can be hacked. After a shortish time you may find the right way for you to go

best of luck

sue

Susie, the thing Dr. Goldstein brings to us is his specialization in the vulva as a gynaecologist and his dermatology interest which has arisen because he's married to a dermatologist. Most of us will never have access to a co-specialist like him. I have a gynae who has 1000 LS patients, so she's a good one. I think there's a lot of misunderstanding in some doctors. I've had LS for 40 years with many long periods of having that papery-fragile white skin torn deeply down the middle. I wasn't diagnosed or prescribed Dermovate untill 18 months ago, so clearly the patch wasn't 'caused' by the drug since I asn't using it. My patch is very slowly fading from white to pink (but it goes up and down with stress levels) and the tear, when it happens, is much shallower, less painful and heals quickly. My gynae was not satiisfied with this amount of progress so she switched me to Tacrolimus. It's only been six weeks, so it's too soon to say whether it's better yet. Seems about the same to me so far. I've just bought a big tub of organic coconut oil. Hoping that will be a better moisturizer.

Thank you for replying. Now that I have found this site I will certainly be reading and assimilating as much information as I can. I had never even thought that my diet may play a part in terms of affecting the severity of LS. I've also discovered that there is an association between LS and auto immune diseases and that 3 in 10 people with LS also have an underactive thyroid gland. I'm now beginning to wonder if my weight gain over the last year could be partly attributed to LS - thought it was more to do with being made redundant and trying to set up a new business (stressful time!). I have managed to lose 30 pounds in 4 months but it's been very hard and I have more to lose so I may take the advice of suedm and get a second opinion. So much to learn.....

Thank you so much for this information. I am based in Stockton on Tees (North East England). So glad someone is thinking the same as me as following my consultations I just had an uneasy feeling that the 'specialists' were not used to dealing with someone with LS - particularly one who keeps on asking questions and who was not happy at receiving different answers! Ironically, it was a trainee doctor who was undertaking her training within my doctor's practice who was the one who took the time to examine me and to refer me to a gynaecologist. Prior to this I had seen two different female doctors within the practice who just assumed I had a thrush infection despite the fact I kept telling them I had no outward symptoms of thrush. It was the trainee doctor who took the time to listen and who examined me and she was the one who indicated it could be LS and prescribed Dermovate which worked within a matter of days in terms of relieving the itching. She still decided to refer me to North Tees Hospital and of course that's where some of the confusion arises as the trainee doctor stated I could continue to use the Dermovate indefinitely (like Dr Goldstein recommends) whereas the gynaecologist stated I should stop using it completely after a certain length of time. The trainee doctor has now left the practice so I am now back to square one with having to go to a different doctor within the practice. 6 monthly appointments have been set up by the gynaecologist though so at least I know I am going to be monitored given that LS can lead to cervical cancer. And there lies shock number two - when I was trying to research LS, my searches took me to the Macmillan Cancer Care webpage. I swore profusely and thought 'what the hell' - I know it's dangerous to do your own research but when you don't know anything about a condition you have been diagnosed with what else can you do if none of the 'specialists' are providing that information? After scaring myself to death I then realised that only a small percentage go on to develop cervical cancer and at least I am going to be monitored every 6 months so I will guess they will pick up on any changes. But thanks for the tip about self examination - something I will certainly do going forward. May I ask if you have taken other steps in terms of of obtaining a second opinion? How did you know where to go/who to ask etc? Also, would you be kind enough to recommend any other ointments which can be applied in between Dermovate applications as this seems to be what a lot of people on this site are doing? I can see references to 'emollients' within the different posts but I can't see any brand names (wondering if this may not be allowed?) so I'm not sure what to ask the doctor or pharmacist for. It would be great to hear from you again and many thanks again for taking the time to reply.

Thank you for replying. Sounds as though you are getting a good level of care - can't imagine having to live with LS for 40 years though. I've only just been diagnosed and the thought of having to deal with this for years to come is just depressing. I agree that Dr Goldstein really seeems to know what he is talking about. Although I live in the UK I lived in Seattle, Washington State for around 3 years and I know the medical advances in America where always one step ahead of the UK. I am going to take the advice of suedm and take a screen shot of a few pages from Dr Goldstein's presentation along with the web address and give it to my doctor and gynaecologist in the hope they sit up and take notice :-) It may just help them to realise that this really does affect a lot of women and not enough is known about how best to treat this awful condition.

Did we mention that stress is also a factor?

That is so positive ...do let us know how you get on. I went to the Ideal Homes Exhibit  y'day and was approached by a couple of girls asking me if I had any health issues....they were promoting aloe Vera ...so I gave them chapter and verse about L S  ...one of them has had " thrush" for several years... She will go to GP now to get checked out. With luck it is  thrush, neither had ever heard of LS. We o need to advertise this condition more!

How large was your tube of Dermovate? - the 30g should last about 3 months - a pea sized amount is all you will need

The emollient cream...ointment can be purchased from the chemist in a large tub for about £5- i go to the large branch of the well known chemists, locally,  to the dispensing section- i also talk to the staff about LS-  I am keen they have knowledge of the condition

Actually the cancer would probably be of the vulva -a  less easy place to deal with than the cervix but easier for US to see our changes- eg sores that will not heal lumps and bumps- like the breast self examination - you should immediately report to your medic

I have been "discharged" from my gynaecologist - mutter mutter mutter...cos of the NHS cuts locally and the retirement of mine! I am about to go to my GP and ask to be referred to Bristol or the Royal Free in London for  the second oopinion. For some time until recently my condiiton was quiescent - not inflammed just the slow march of fusing, recently after a flare up the fusing is becoming a worry - I pee at right angles - messy if I am not careful -so i seem to be going down the same path Hanny went last year!

I live in the Midlands, and Birmingham doesnt have a vulval specialist that i can find, i used to live in Oxford and they are largely surgical in outlook and surgeons like to cut...... like gynaecologists!

Going back to ointments - i use Diprobase to both wash and protect myself with - I get the pump- much less danger of contaminating the remaining ointment . Private Message me if you want to talk more

That makes sense to me susie my consultant more or less said the same thing as did my really good female gp.  You need the dermovate to break through the thickening area so it can help the LS.  It works for me, whereas the coconut oil make me really red soft and sore.

Low Thyroid hormone levels can encourage weight gain - thinning of the hair and reducing the quality of your skin. The trouble is if one thing goes wrong then we stop looking for other causes of different issues and blame what it is we do know!

This is like reading my own story.  I also have been discharged, also muttering, because of NHS cuts.  I am also only being seen once a year by GP (also NHS cuts) so I have decided that around 6 months I am going to visit my GP to ask for her to check me properly stating that I am having problems with my check up due to visual problems. I wear varifocals and do find it difficult.  I have posted a thread about using a periscope.  Hope someone has one and can tell me if they make it easier. 

I am also peeing in a strange manner due the cliterol hood disappearing.  I am hoping it doesn't fuse over like some have had happen. 

Have just had two biopsies two days ago on white patches in my mouth -  stitches are very sore. Also had cryotherapy on a blackish mark which they think is a varicose vein in my mouth. (Never heard of that one before - apparently common with people taking atenalol for blood pressure problems).  Felling very fed up..............

Flare up down below due to stress now.

Can I ask how quick dermovate relieves the symptoms as I've been using it twice a day since Tuesday this week with no benefit as yet! I'm also using coconut oil! Don't know if this is the best moisturiser for me yet!

Dermovate works very gradually. Like a year or two. That's why we all talk so much about everything else we're doing to soothe the skin, minimize its contact with urine, lower our anxiety levels, reduce our sugar consumption and avoid sex when flared up.

It worked for me in the 2 weeks the consultant told me to use it daily, i suppose we are all different which different degrees of LS.  I do however continue to apply once or twice a week