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Lichen sclerosus, vulvadynia, endometriosis and ovarian cysts

Posted , 8 users are following.

Snowlily
Snowlily

Hello, im new to this site as i have just been diagnosed with lichen sclerosus, vulvadynia, endometriosis and possible ovarian cysts and I'm only 23 and finding it all very hard to cope with, I'm wondering if anyone has any advice on how to cope with it mentally, emotionally and also physically? Tips on how to help the pain and help control the condition would be much appreciated.

0 likes, 12 replies

12 Replies

  • Ribi
    Ribi Snowlily

    Posted

    Hi Snowlily,

    I'm new here and undiagnosed as yet, so far with regards to symptom relief I'm probably no help but I've tried vinegar after peeing helps a little coconut oil helps a little sylk lupe helps a little ice/ heat helps a bit bagisil lanacan canstean not a lot probably less than the others. Currently I've taken murefen portion and more sulpadine than recommended. And I've spent 3 hours crying. The one thing I keep reading is emu oil which I've not tried tomorrow I'm shopping for hydrocortisone cream and soy bean pills which I supposed to be good for dryness. Essentially I have no helpful advice other than you aren't alone, and it's really scary but at least here you can put it into words, and whilst we are all different here someone gets it. I hope you get some peace this evening. Xxxx💛

  • sheila49099
    sheila49099 Snowlily

    Posted

    Hi Snowlily,

    I would start with a glass of wine!.....kidding!

    Welcome to this group. I know you don't want to be here 'cause none of us do. Read through the things on this line and you will find a lot of good ideas, warm companionship with a bunch of caring ladies.  Keeping well lubricated is really important.  I use coconut oil but really anything that works for you is the right thing for you. We are all different.  What words of wisdom did your doctor have for you?  If you didn't get any help than move on quickly to get a sympathetic medical person.  Keep us posted with your progress.

    Hugs

     Sheila

  • Snowlily
    Snowlily

    Posted

    Thank you for your tips and support it is nice to know that there are other people out there that understand, but not nice that we are all suffering the same pain and agony sad hopefully one day they will find a cure for us all and find out what causes these awful conditions. I truly know how you feel the amount of nights spent crying over this is numerous, at least here we can all be scared together and help each other through, as no one else seems to understand. Xxxx thank you for your reply, I'll have to give those a try, I've been told by gynaecologist that I should only wash with aquaceous emollient, only wear cotton pants, use tampons instead of pads as the material can irritate, loose clothing, vaseline after toilet, and I'm on amnitriptyline to help with the pain and a bundle of steriod creams to help and stop the fusing, but the pills aren't helping with the pain at all.
  • Snowlily
    Snowlily

    Posted

    Haha, a big glass of wine actually sounds pretty good 😂

    Thankfully I do have quite a sympathetic gynaecologist that did give me some tips on how to help ease everything, also that I need to change my diet as well as that can help and maintain a healthy weight. I only just gave birth to my second daughter 6 months ago and she had to be delivered via emergency c section. Finding the baby weight hard to lose this time round rolleyes she also said that keeping well lubricated is key too. It's so nice to have a bunch of lovely ladies to talk to about this who understand this forum is a godsend 😊 i think we need all the glasses of wine and hugs we can get xxxx

    • auburn2000
      auburn2000 Snowlily

      Posted

      All I can say is I sympathize with you and feel so badly for you. I wish I could help.  I have LS lost alot of tissue because I didn't realize I had it until damage was done. I happened onto one of these sites  probably a year ago and sort of diagnosed myself  and started using cider vinegar mixed with water sprayed on.  I also use Emu Oil as a lubricant and moisturizer, it is very soothing. Some have mentioned a nice warm sitz bath with baking soda it would also feel good. Just know we are all here to help eachother and for support. I was diagnosed about 6 months ago and that is when my Dermotologist told me the damage it had done and I had not even realized it, I was just so very itchy and used whatever would help to stop the itch.  LS is not curable but it can be controlled.  My Dr. said whatever I was using was keeping it under control and best if I don't have to end up using steriods etc. as there are complications from them. I  still have itching but it is not so awful as it was. As soon as I apply my vinegar and/or   Emu oil it soothes the itching.  Otherwise I bruise myself as my skin is very thin now that I am past menopause.  So try to stay positive because you will find something that works for you just as some of us have. Any new remedies are always welcomed by me as we need as much help as possible.
  • Snowlily
    Snowlily

    Posted

    Hi auburn 2000, thank you for your reply, i'LL have to give those remedies ago anything that can possibly help is worth a shot! So far I have lost my inner lips and all the elasticity I had is now gone, my doc told me that I can't give birth naturally any more sad which is a big bummer, lol, not a fan of the c sections, it's so nice to be able to finally talk with people that understand! It must be hard to have lost everything I really feel for you and it's such a shame no one picked up on it earlier, if I find any new remedies i'LL definitely let you know xxxx
    • auburn2000
      auburn2000 Snowlily

      Posted

      I'm sorry to hear that your Dr. said you can't deliver without a c section, but the good news is you can still  deliver... look at the bright side as much as you can...things could be worse is what I figure after reading so many stories on the forums.  I also had an ovarian cyst when I was young, in fact I think if I recall possibly two of them. They can be very painful but fortunately mine burst without any medical prodcedures. Good luck with everything.
  • dani2590
    dani2590 Snowlily

    Posted

    Hi Snowlily

    I'm 25 and was diagnosed in January. The ladies on this forum have been wonderful. You've come to the right place. And I always feel less alone when reading of other women in a similar age group to myself.

  • Snowlily
    Snowlily

    Posted

    I have definitely felt less lonely since joining this forum it's nice to be able to talk to people that understand what we are going through, and to get some well need tips. It is a comfort to know there other women at a similar age as well as I keep reading that only women between their 40-60 get it and rarely anyone under that age develops it, it is definitely poop. I am so glad I have joined this forum as I can feel it's definitely going to help me mentally and emotionally. Xxx
    • auburn2000
      auburn2000 Snowlily

      Posted

      I was probably about 65 when I started having problems but didn't ask the dr about it right away and even when she saw the white patches she said if they didn't go away we would biopsy them.  However I started using the vinegar and didn't complain about it as much the next time I saw her for my yearly but she gave me yeast type medication.  That didn't really help so I ended up going to a Dermotologist... she agreed what I had figured after reading up on my sypmtoms that it was definitely LS and I had lost the inner lips as well. Sad
  • samantha1970
    samantha1970 Snowlily

    Posted

    Hi Snowlily,

    i havr LS, which currently is at the beginning stages, but have also just been diagnosed with vulvodynia. I discovered what I have about 6 months ago, but have had symptoms for about 4 years. The vulva dermatologist doctor just advised last Friday to use Lidocaine 5% cream for the vulvodynia , I, waiting for my prescription and will pick up tomorrow. But, I can tell you that I have Emla which is 2.5% lidocaine and started to use it massaging in 3x a day. Wow, no pain for the first time in 4 years, the doctor said it will take 3-6 months to retrain the nerve to stop sending messages to the brain but it will work and the pain should go away. As for the LS I have to keep an eye as its early days. Lidocaine can be bought in Boots or on prescription. Let me know how you get on. Samantha

  • suedm
    suedm Snowlily

    Posted

    Hi Snowlily, i had an ovarian cyst many years ago - it was shrunk with  hormone tablets- they could not operate as I had too many adhesions from previous c sections and a sterilisation- no further problems but i did have an early menopause.Not sure it that was related or predestined!

    I understand that a sudden change in hormone levels can be a big factor in being diagnosed with LS- and giving birth is certainly a condition where the hormone changes go into over drive! - and of course increases the stress levels. Do try NOT to stress about the condition - it will not help you to improve and is likely to make the various conditions worse.

    Stress management is hard but one way is to concentrate on the GOOD things inyour life and dismiss the bad as fast as possible. Do things you enjoy doing- cept diving into a box of chocs- or bottles of too much booze! Natural endorphines are produced in the body with exercise and laughter.

    Mindfulness training is an excellent way to understanding you your experiences and your body - try it

    Other advice: a survey has recently been printed  on this site do look at the results it will make interesting reading. AND check out the Dr Goldstein's webinar. All the information given is v useful, and of course read other threads a lot of info is offered. Keep the skin of the vulva protected against urine andother body fluids as much as pos, and regularly look at the area AND STOP STRESSING if you can

    good luck Sue

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