18 and diagnosed, really worried and would like some advice
Posted , 8 users are following.
Hi! I haven't really used a forum like this before. Basically I had been experiencing itching downstairs for the last 2 years and kept getting diagnosed by the gp with thrush. Eventually I went to a specialist when about a year ago sex became unbearingly painful. I couldn't have it at all. They initially diagnosed me with eczema and I started using eumovate which improved the itching and sex slightly. However it never went and I have just been back where a gyno told me it is actually lichen sclerosus. She did a biopsy and has given me dermovate to use twice daily for a month, once daily for a month and then every other day for a month.
I am a bit painful downstairs due to the stitch and am not sure when to start applying the steroid cream?
I have invested in dilators to try and help with the sex. I can still have sex with my partner and it is enjoyable but there is a bit of pain at the beginning and sometimes I get cut. I think this must be due to the narrowing of the vagina.
Can anyone tell me if this gets better? The thought of having to live the rest of my life like this is horribly depressing.
I've read so many stories about marriages failing due to the bad sex in lichen sclerosus and I don't want to never be able to be intimate with my boyfriend.
I have invested in some dilators and been using them prior to the biopsy. They had been helping.
Will the application of dermovate & dilators help my condition?
Thanks a lot to anyone who will reply
0 likes, 18 replies
Glor888 kasiaj
Posted
Sorry to read of your problems. Unless your Dr advised otherwise I would start the steroids straight away. If after some time you feel the cream is not helping then I would keep going back to my Drs/Gynae until I got better results. Maybe a course of antibiotics may help, it could be inflammation etc.
You should not still be experiencing pain if you've been given remedies. Maybe there's an underlying problem. If you still don't get any joy, seek a second opinion.
I wish I could be of more help.
Let us know how you get on.
Gloriana
lizziewizzie Glor888
Posted
i would wait until the inflammation subsides and avoid anything that would further undermine your condition.
i looked up anti-inflammatory diets...am new myself...but have had great relief by removing allergens...for me gluten, grains and dairy...in less than a week as others have too on here.
kasiaj Glor888
Posted
Kasia
kasiaj lizziewizzie
Posted
Kasia
suedm kasiaj
Posted
Do NOT scratch the Itch! THAT will cause further inflamation and will quickly damage the area much more quickly than and steroid ointment - which is much better than the cream. Do try an avoid penetrative sex for the time being- you will find in time it will improve - but first allow the skin to heal then take the sex very slowly at first
As to the itch you can fool your body sometimes by scratching or rubbing another part of you body believing it to be your undercarriage..it can work well especially when you are out and about in public and you can't behave like a fella and happily scratch without embarrassment
The one aspect you will have to learn is patience, it will take time for the steroids to work- but they will in time.
Make a nice drink and take a notepad tothe computer adn watch the one hour long webinar - you will find the address in the "New To LS Start Here" https://patient.info/forums/discuss/dr-goldstein-lecture-271556If you look at the discussion topics you will see there are many threads that will help you get thro this tiresome condition. This is an autoimmune condition which while it wont go away will go into remission at times. Keep your stress levels under control reduce the sugar in your diet and ask you boyfriend to read some of the threads wit you- then he will be able to understand and support you more.
(There is a condition which makes sex painful - not because you have LS or fragile tissue but because your body FEARS sex will be painful - this can be sorted fairly quickly with if you approach the condition the right way, check out the reviews for something called vagi wave)
There are lots of helpful tips in the various threads and in the New To LS page. First do look at yourself in a magnifying mirror in a good light - you need you know if there are any changes and you will need to note if any particular area is reluctant to heal so you can bring forward your appointment withthe consultant
This is a really tiresome condition and one that must not be ignored but looking after your self both phyically and emotionally you can improve a great deal
Take care and best wishes Sue
renee77108 kasiaj
Posted
kasiaj suedm
Posted
I will take on all of your advice. Thank you again
Kasia
Octopus_1289 kasiaj
Posted
I am 69 years old, much older than you, but I can identify. I too had this problem for years, and was treated for thrush, water infection etc. It took a biopsy to prove it was LS. Sex became so painful, we had to stop altogether. Since we are an older couple, we both settled into a life without it. But, I sympathize with someone so young as yourself. Talk to your doctor about the dilators. I have read that they help. The steroid creams help a little, but you have to use them with caution. They tend to thin the skin and make it easy to break open. That is why I had to stop having sex. The vaginal opening will continue to decrease if steps are not taken. My prescription is for Clobetasol, and I have to use it sparingly for a couple of weeks, then gradually decrease it, and wait another month or two and start over. I sure wish there were a cure for this disease. It takes a strong relationship and a caring partner who is willing to research it with you, to understand the disease, Good luck, and I hope your LS stabilizes soon.
kasiaj Octopus_1289
Posted
Do you think the steroid cream will make sex worse? I felt improvement with the dilators so I am really hoping the combination of this new steroid cream and the dilators will make it almost back to normal. But perhaps I am being too hopeful.
It's very scary to read about all of this on the internet because it is much more common with older women and so there's lots of people writing about how it has ruined their sex life completely. So it's horrible thinking that might happen to me at 18.
I am lucky because my boyfriend is very caring and understanding about it all. But i feel so bad that this effects him so much also and feel very guilty. I am very scared that sex will worsen or stay how it is.
I do not think my LS is too bad as there is not much pain, only itchiness. So the main concern for me is how this will affect my relationship.
Kasia
Octopus_1289 kasiaj
Posted
Cheers!
kasiaj Octopus_1289
Posted
Thank you again
Kasia
lizziewizzie kasiaj
Posted
I was wondering whether you might have considered inflammatory foods as being one possible causation? I have heard about this thro my work but also read of patients here cutting out gluten, grains and dairy....so thought i'd mention this prospect. I'm trying it myself and finding great relief...but I am having to try to be more organised about food. That I find difficult but it surely has to be worth the effort as it seems i have been eating all the wrong things...even thinking my diet was healthy...when infact it definitely was not!
kasiaj lizziewizzie
Posted
I don't want to do both things at the same time because then I will be able to monitor what is working for me!
Thank you again and I hope the diet continues to give you great relief :-)
Kasia
hanny32508 kasiaj
Posted
It could be possible that you also need extra estrogen. That helps the flexibility of the skin. Worth checking out.
Also helpful might be - if you start watching your diet. (I'm without sugar, gluten, alcohol, cheeses, for example)
And I use coconut oil as a moisturizer after I rinse with baking soda water after every bathroom visit. I also take baking soda baths. And I use a dilator every morning.
Just a few items to look into. Also good to watch Dr. Goldstein. And browse through the various discussion on this forum. The more you learn about your condition the better you will be. Over time you will learn to act immediately and prevent worse.
kasiaj hanny32508
Posted
Thank you again
Kasia