Recently diagnosed - 21 years old, help x

Hi deethebee,

Thank you for taking time to reply. It’s nice to see we’re not alone in this. Doc said apply the Dermovate (pea sized amount) once a day, at night for the next 3 months. However, that’s not helping with the itching and uncomfortableness throughout the day.

I have to apply the cream to the whole of the Vulva area as I am swollen and sore. Mainly focusing on the Labia Minora as this is where it is fused. The Labia Minora have fused together and I cannot see my clitoral hood, clitoris or urethral opening. I can only see the vagina hole and that’s almost completely fused together too.

Having a wee is getting harder and I can’t seem to be finishing my wee’s properly. Doc said this is because of the fusing over my urethral opening, the wee has to travel downwards underneath the skin and then out of the vagina opening. I’m scared about getting infections from any left over wee left underneath the skin??

I am from the United Kingdom and I’ve been to see a gynaecologist. I went to the doctors this morning, she basically said what do you want me to do? I explained about the itching throughout the day and she told me to use the Dermovate as and when in the daytime. But gyna told me to use it once a night only?? So many mixed messages.

I’m using the creams just struggling to deal with it mentally I think. It’s a lot to take in for me at only 21 years old. Can only hope it gets better x

Molly x

i have just sent you a private message

Hi Molly - so sorry for you. I am in UK and know the problems you face with NHS doctors not being sympathetic enough. To soothe, have you tried soaking in borax solution or epsom salts? A tablespoonful in a shallow bath or a teaspoon in a sitz bath (like a bidet that fits on the loo, you can buy them on Amazon). This can calm the itching. And you can swab with borax solution too. My GP prescribed Amitryptiline to help tune out the itch, you could ask about that too as it does help. Good luck and always make a fuss with doctors so that they listen to your concerns properly. LS can be managed!

Hi Sarb73328,

I could not believe the way the doc spoke to me yesterday!! I am currently writing a complaint against her.

She did not give me any advice/help about the itching throughout the day and I didn’t even talk to her about how I felt depressed and down, she just didn’t make me feel comfortable at all. She made me feel like my condition is not important. She also told me not to go back to see her and to book in with a different doctor next time as she only works at the surgery once a week!!! I then found out by the receptionist, that the doc I saw was the doc specialising in gyn!! She made me feel uncomfortable to ask if she would have a look for me. I eventually did ask and she didnt close the curtain to give me any privacy to get onto the bed she just stood there and watched. She was so rough with me and it’s so sore and tender down there. As she opened the outer lips too look, she teared the skin because she did it too rough. I walked out of the docs feeling worse than when I went in. Disgusting!!

I am going to look into those Sitz bath as this is the first time I’ve googled it but I have saw “Sitz bath” mentioned a few times on this site so many it’s worth looking into.

I will mention Amitryptiline next time I go (to see a different doc of course!) and see what they say. The docs are not helping at all!

Molly x

That is disgraceful, how unprofessional of the doctor. you must write and complain!!

MOLLY! you've got to be the umpteenth person who has had this type of experience from their gynecologists! WHAT is going on with these folks? Last year when I was at the gynecologist (who've I've never met before) she gave me a very surly hello, not interested in anything i said.. and when she was looking down there I "overheard" her say in stage voice " Use it or lose it" I didn't respond (I'm 72 and haven't had a partner in years. She never met my eyes and just left the room having spoken only to the recorder person in the corner. . with just like everyone else here mentions regardless of american or UK etc... NO instructions, no compassion.When I got back up with my integrative cardiologist doc a weeks later, He didn't even get all the way into the room before, apologizing and saying, "yeah I know, don't worry you never have to go back there. (all he needed was a confirmation -grin - integrative docs & cardiologists don't tend to have stirrups in their patient rooms).

Be sure to get some aloe vera gel - the 99% only aloe - no fragrance fillers, lotions etc. it will actually help heal up the open sores. and please dearheart read the nutritional protocol so you can decide which of the supplements you are ready to build up your immune system with. I know - it's an expense to get started; I had to "eat bean" to get them all started and now I replenish as I can afford them and intuit. Blessings,

OMG Molly, your experience was just dreadful. I 'm glad you are reporting her.

You will find more info here than in any doctor's office.

Keep in touch. Hugs.

That's awful, Molly. Definitely complain.

I think many doctors don't know how to address us because they are unable to give us hopeful information, but that doesn't excuse dismissive and rough treatment. I have found over and over that any expression of alarm, depression, fear from me as a patient is just met with a breezy 'well that's just what it is: handle it' type of attitude. I sometimes feel like saying "how would you feel if your vulva was slowly deforming - your womanhood/sexuality changing before your very eyes and there is little you can do about it??" I am 65 and married to an understanding man but these thing still matter. My GP told me the NHS haven't the time to commiserate or offer any counselling for the way this makes you feel in your mind, they can only monitor your condition and prescribe steroids.

I met a very gentle, very young dermatologist yesterday who reassured me I have no signs of cancer, just LS, but she didn't tell me anything else about LS that I don't already know through my own research and from ladies on this forum. So it is down to us to find our best management systems and hope we go into long periods of remission, I guess.

Molly, take heart, you will find your own products/supplements/diets eventually and they will ease your symptoms so that you feel you are managing your LS, then it won't be as frightening. All the best to you.

Nancy - "use it or lose it"????? What a crass thing to say and how very stupid as it simply isn't true anyway. And to not listen to you nor look at you at all is just downright rude and arrogant. Sometimes I think doctors simply see us all as a piece of flesh and organs, completely forgetting we are human beings with emotions like them. Grrrrr.

grrrr is right. I could brush it off being my age and experience (smiles and knowing I had many good years) but I feel for the young ones like Molly and others who are so young their sexuality is still being developed and such lack of sensitivity really is not excused by "being busy". How long does it take to offer a commiserating smile and a hand held? I've even offered to make handouts to my doctor if his office is too busy to make up such a simple thing that would SAVE them TIME...in the end and INFORM new patients. well I haven't considered helping that gyne - but I suppose I should.

@jane08222 Thank you for replying and supporting me.

I am from the United Kingdom and I am being seen by a gynaecologist through the NHS. Not sure if they do anything like that in the UK?

Molly x

Thank you Samantha! I am still finding things out about the condition and finding different remedies to trial and error. Just a lot to get my head round x