Diagnosed and having issues dealing with it all.

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I don't know how this post will go, so please bear with me if I ramble.

I’m 34 years old and my issues started after the birth of the second child. I spent over a year in so much pain and discomfort, that it hurt to wear underwear. I was eventually given a biopsy and it came back as "chronic inflammation" and I was sent on my way. Finally, the symptom subsided and I was able to live life normally with the occasional discomfort or painful flare ups.

6 months ago, I went to my doctor (a new one due to a move) and told her my symptoms, because the flare-ups were getting worse, lasting longer, etc. She sent me to a vulvar specialist. He looked at me for about 5 seconds and diagnosed me with LS. He gave me a  quick explanation on how to treat it, a prescription for Clobetasol and the word "lichen" on a sheet of paper was sent away. 2 months later, I went back to see him because I was still in a lot of pain even using the clob. He made me feel like I was wasting his time. He acted annoyed with my questions and told me that, despite both my husband and I agreeing that the treatment plan I was following was indeed what he told me to do, I was doing it wrong. I left feeling like overwhelmed, sad and lost for what to do. Both my husband and I decided I should find someone else, but where we live, it takes time to see a specialist.

Ever since that time, I've been battling feelings of depression and hopelessness. I keep having symptoms that, for the most part, don’t fully go away even with the use of Clob, constant moisturizing, etc. Even when I feel symptom free, it doesn’t last more than a day or 2 before I feel the symptoms flare-up again. The constant pain and irritation is taking a toll on me. I’m not sleeping well, I feel like I have way less patience than I normally have. I am unable to have a sexual relationship with my husband because it hurts (not during, but after). While my husband has been nothing but wonderful, I worry that this going to take a toll on our relationship. I feel like, aside from my husband, I have no one to talk to about this because no one understands. I’m so worried for my future with this disease.

Sorry for the long post, but I feel like my feelings about this have been building up and I just needed to let them out to someone who understands what it’s like to have LS.

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  • Posted

    Hi lm so sorry for you l have LS all l can say is l use Manuka honey and it heals its an on going thing sometimes l use the st cream but l put the Manuka on each time l wee lve put some in a very small glass jar and l use it as much as possible use at least +6 let me know if you use it and how you get on
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  • Posted

    Hi Canada,

    Please read through the thread "An experiment with Borax".  There is a host of important information in it.  You will also find relief from soaking in a bathtub with 1/3 cup of baking soda.  Some of us do not use steroids at all, as there can be a reaction to them.  Sadly, many doctors are not that knowledgable in treating LS.  There are many natural ways to find relief and healing, as you will see as you read through the thread.  We all started out like  you, scared and in pain, but in time you will see improvement, as we have.  Hang in there and you will get better!

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    • Posted

      I'm so glad ann62282 mentioned the manuka honey, the +6...it is amazing for healing.  A little sticky but definitely effective.  And also cotton panties. Your body needs to breathe down there.

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  • Posted

    Awful how you have been treated.  And all the suffering that goes along with it. 

    ?I'm familiar with the depressive feelings.  There is so much mentally to overcome at first.  But it is possible to get LS under control.  Therefore I encourage you to read the thread "An Experiment with Borax' on this forum. 

     

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  • Posted

    Be sure to read a lot of the post out here on this disease.  It is much more common than what was originally thought.  Me...I don't like steroids and refuse to use them. If it was a cure...I wouldn't think twice about it, but it's not and long term use just causes more issues. Use a very gentle cleanser down there...no soap. Yes, moisture is important, but also healing. In a spray bottle I use witch hazel...the type without alcohol. You can find it online and in some health stores. Spray after each bathroom break. Then moisturize with either...or alternate with 100% aloe vera gel or organic coconut oil.  After several months of use, you will find that you may not have to use it quite as often.  Some use bicarbonate of soda dilute in water as a spray after bathroom breaks with success and emu oil...which I've never tried, but several swear by it.  Also, you research supplements.  I find during a flare if I have itching that Caprylic seems to help as it's a natural anit-fungal, and some relate this disease to that. So experiment, read...don't do anything foolish, but don't give up.  Also, read about the mona lisa touch.  You may find that as a solution.  And talk to people on here...we all struggle with this. Take care.

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  • Posted

    Hi Canada,

    Really sorry to hear that you are feeling so down. It does seem really unfaiir that some of us have this horrible condition. I too was misdiagnosed as initally the doctor thought I had hemoroids. I also had LS as plaques on my back , which is quite unusual. If you can get it under conrol you will feel much better, and using the forums will really help. I only found out about dialators through this forum and I agree the doctors don't know a lot about LS. 

    Keep writing on here as a lot of people have found alternative ways of dealing with LS.

    Good luck and I hope you feel better soon. 

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  • Posted

    Use virgin olive oil. No soaps. Use black soap or. Organic. I use clob very little. Lot of showers. Have very little itching. No pain. Lot of praying. God bless we are with you.
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    • Posted

      Very over whelming. Stay busy it helps. Will go back to the doctors soon. Find out where I am. I have trust in God and he will give me the will to keep going. Diana
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  • Posted

    I just want to thank you for your replies. There is so much information and advice to read through on here. I've just been feeling so overwhelmed by it all (the pain, the worries). It's amazing to have a group of people who know what it's like. It makes you feel less alone. Thank you!

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  • Posted

    I feel for you my dear. I live in Louisiana. I went to my GYN first and he used different meds on me for a year then February 20 , 2017 he took a biopsy and said I had LS. Give me Clobetasol and proctofoam I got the red spots and itching. Mine cleared up in a few weeks using these Prescripts. An itch or flare up maybe once. Was told yesterday when I called them to see if I still had to put the Clob on twice a day since I wasn't having any problems. They told me to start just once a day using Clob so I'm doing it at night now every other night unless I get a flare up then go back to twice a day. I never heard of this. I'm 63 and run my mouth to everyone and I've never heard anyone talk about this. I've learned a lot on this site. These ladies will talk to ya. I use a mixture of 1 tsp baking soda and 1 tsp mule team borax mixed with warmed bottled water. Cool and put in a squirt bottle Squirt it on the area after using potty and pat dry. I even squirt it on the paper in my hand to cleanbottom after bowel movement If you are tender there this will help. Some of the ladies on here told me about using this. If you get depressed and need and need an ear to vent....I'm here! Don't hold it in! Having someone who understand really helps. Some days I just read the posts so if I haven't had that particular problem if I do get it I will be a step a head. Lol. Where do you live?

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    • Posted

      Well that was silly of me. That wasn't your name. Lol you live in Canada. I need to be more observant. Lol

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  • Posted

    I really feel for you and what you are going though. An awful lot of us have unfortunately

    started out with misdiagnosis or generally poor advise and treatments. I have

    felt so much better and supported since finding this forum. We all have advise

    to offer and it is all valuable. Just be aware that we are all different and different

    treatments work for different people. The main rules are: hydration with whatever

    emollient suits you best, regular self examination as well as Gyane/Dermatology

    checks to ensure there are no changes, discontinuation of all soaps and shower

    gels, a treatment that maintains skin integrity and controls the condition.

    Stay in touch, stay strong and good luck.

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  • Posted

    Hi there

    I am totally with you on how awful this LS is!!

    I am 25 and just had a biopsy 4 days ago to check white lesions down below. They think LS and possible VIN. My vulva is so sore and on top of that having this biopsy is really gotten me down. I feel like being so young I am terrified for what the future will hold with this illness. I have had extreme itching and burning down below for years and kept being told I just had thrush. Now after eventually pushing the Dr to examine me they are querying something more sinister.

    I am glad to find a group of women all sharing their experiences. I just started dermovate treatment but my god or bloody burns!!!

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    • Posted

      My question is how much is being done to fine a cure. How many people are aware. Your young we need to make more aware. God bless you. Diana
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