Diagnosis

Hi Susan 

Thank you , I feel a bit better today , am starting meditation , hoping to just get my head calm , I think the Dhali Lama says you must “ silence the chattering monkey “ and once I can do that hopefully I can begin to deal with this . My friend has told me to get  off the “ internet of doom”  I have found good support on here , there are always doom and gloom merchants , I suppose you have to just find your path and work it out along the way . You are a godsend all of you xxxxxxx❤️

Hi Susan, why the antihistamine?  I used to take one every night to help me sleep, but I learned that it might increase the risk of dementia.  Did the antihistamine help your LS?  I love the way they help me relax, but now I’m afraid to continue to take them unless really necessary.

My GYN told me not to take a Antihistamine because it drys the tissue. Seemed like it would be logical to take it, I get tempted to do so...

Pat, as far as I know, maegnesium is a great relaxer and I know there are other minerals and supplement s that also help. I take magnesium at night as well as a pill in the day it helps gt us to sleep  - along with melatonin. YOu might give those a try. 

Hi Ajay

I am so so sorry for you . I wonder how we would cope without the anxiety , I can’t see a way out at all , you probably feel the same . Like you I am on the cream full time just at least trying to settle it . I will worry about the rest of it once it has calmed down . Which country do you live in ? Have you got a good support network ? Xx

I’m in England. My gp gave me a leaflet and some steroid cream and told me to come back in 8 weeks. He was kind but I honestly haven't much idea what I’m doing. Have you got a good support network?

What really baffles me at the moment is what order to do things in..

So when I go to the loo, I’m using water wipes and dabbing to clean,  using loo paper to pat dry carefully then putting on either coconut oil or epaderm. In the evening. I bathe in water and baking soda before applying the steroid cream, but should I emolliate before the steroid cream and if so how long before? And during the day should I use a barrier cream like sudocrem as well? If so when? I want to try establish a routine but can’t quite fathom one out. 

I just hope that when I get into the flow it will start to feel more ‘normal’ 

Xx

My GP did the same thing . I am on Dermovate twice a day for two weeks and then Betnovate twice a day for two weeks . My two weeks is up tomorrow , so let’s see , I have panicked like mad daily but it is feeling better today . I paid and saw a private gynaecologist who told me that she sees 10 people a month with this ( new cases ) . She prescribed Hydramol , which I had a reaction to so I am using sudocreme , gently dab  with a wet tissue and then pat dry put cream on . I soak in the bath every night and then put steroid cream on . Apparently you are not supposed to put cream on for an hour after steroid . The thing I am worried about is the fusion !!! How do you stop it / control it . I really don’t want it to get any worse . My husband has been very understanding , but I have no females in my family I can talk to . We will work it out it’s just how . We are starting the journey together and I am sure there are lots of people who can help and guide us xxxxxxx

Hi ajay, After using the toilet spray your Vjay with either water/water with a pinch of salt/or water with a pinch of bicarb of soda..your choice.  The gently pat dry. Then apply a TINY bit of your chosen oil, like emu oil/coconut oil/olive oil.  Then later on after bathing apply the steroid cream.  You will likely need to apply that twice a day at first depending on how your Vjay looks (Do you have white plaques of skin) you really need to use a hand mirror to make sure you are applying it to the white areas and not on healthy skin. 

I dont know what your doc told you but most people tend to use it twice a day at first for about 1 week/2 weeks and then they reduce it to once a day for about 1 week/2weeks, and then they use it on alternate days, then eventually weekly.  All of this is very personal to you as it all depends on how you react to the steroid cream.  Hopefully, within a few weeks you will find that you are free of the white plaques of skin.  When that happens I would start using a bit of oil in the evening before bed (instead of the steroid cream) as that will help to stop any fusing.  It is best not to put too much stuff on your Vjay throughout the day as I think this is the primary reason why so many women are sore, they overdo it.

HI Guppy

Would you say not to use steroid cream if you haven’t got white patches?

I’ve just got itch/irritation but looks normal 

Ta

Thanks so much, great advice. I do have white plaques and have been putting a tiny amount of the steroid cream all over the area ( only been using for 45 days now) but will just focus on white bits from now on. I hope the white patches do go away, I had thought they were permanent so you have given me some hope. X

I meant 4-5 days by the way!

I have no idea about the fusing, does it always happen? Are you in uk? I’ve been put on a steroid beginning with glob... I’ve seen if mentioned by lots of women on here. X

Hi Ajay 

I don’t know about the fusion either . I believe from what I have heard and read that once it’s fused it has fused , I think using the clob and moisturiser ( I am on sudocreme at the moment ) is supposed to prevent further fusion . Can anyone else help us with this please xxx

Yes I am in UK in Gloucestershire , what about you ? Xx

Hi Jane, and any other newbies on here. Please don't despair, there are lots of things that can help you, it's just trial and error as to what regime is best for each one of us personally. And yes, fusing can be undone if the right treatment is carried out ?? I was diagnosed October last year, and didn't have itching or burning, but white skin and fusing around the perineum fourchette bridge area. I used/am using Clobetasol ointment (steroid) and Ovestin cream (oestrogen) as my Dermatology Vulval Consultant advised. I was given a regime to follow, as we all should. I also used borax solutions regularly, as well as oils, and was able to improve the white plaque-like skin around the perineum area, and the thin lip area re-appeared etc. I do have tight skin there still due to scarring before diagnosis, and will be having specialist surgery for that, so I can have sex without splitting. But overall, my vulva looks pink and healthy, and am only on maintenance doses now, but use pharmaceutical olive oil a few times a day. So don't give up hope ladies x

Hi Claire, there are two different types of 'itch' one is internal and the other is on the outside of your Vjay.  The internal itch is nearly always down to your diet choices.  If you have an external itch then I would continue using the Clob cream for now.  It is a personal choice as to whether to continue to use the Clob weekly for maintenance, I choose not to and I'm fine, but we are all different.

From what I have learned, they nearly always go away, but for some they do not.  What I would do is concentrate on using the Clob for now and if after three months they are still there then I would look at stopping the Clob and trying something else like maybe Borax.  There is a thread on this site explaining in detail how to use it.

I’m in East Sussex. I’ve been reading on here that olive oil is also good, have you tried that? 

Thanks. It’s a fantastic comfort knowing all you amazing women are out there with such ready advice x