I Cant Stand This Any More.

I have Lichen Simplex Chronicus and it causes constant burning on my entire vulva, buttox and sometimes inner thighs. Almost 1 yr and 5 months of this and I feel like Im going to lose my damn mind!!!!!!!! Up and down depression. Hope then no hope, then hope, then no hope. I try so hard not to cry because I know if I do then I will fall into a depression. Here I am, down once again. WTH is going on? Lyrica gave me hope. I hardly had any pain for one month an a half. I was ssssssooooo damn happy, then something happened and BAM, its back to being an unhappy bitch of a vulva.

Ive been seeing my Gyno every single week!!!! Its expensive. Ive tried everything.

This is so unfair for all of us. We shouldn't have to go through such pain for such a long time. Where are the damn scientists, med. companies, who ever is supposed to be doing research and studies on this? Where are the ppl who are supposed to be trying to find a cure or even pain relief????? We need to find these ppl and bitch slap the HELL out of them. FIND US A CURE!!!!!!!!!!!!!!!!!!!!!!!

Hello,
When I went to see a dermatologist, I was diagnosed with the same thing as you, Lichen Simplex Chronicus and given a variety of creams to try, which none of them worked or cured me. I know the pain you are in and experience it on a daily basis. I have found that I have to try and take advantage of the good days that I have and try not to let the bad ones get me down. It's very difficult and what makes it worse is feeling isolated because of the area we are talking about. I went to a gynecologist who specializes in vulvodynia and he diagnosed me with it so I guess I have both. I don't know. I'm new to this site and I know your frustration. I appreciate your thoughts and comments. I hope we all find a cure!!

What mg of Lyrica are you on?

Would it be worth trying to up the dose a little?

A biopsy has recently revealed I have Lichen Simplex Chronicus also. The pain of this drives me insane,this has been going on for a year and I have taken so many drugs and used many creams and seen many doctors and I'm not getting much relief.Some days I can handle it better than others,but today is not one of them. My partner is very supportive although frustrated with doctors,however i feel bad for him as this has affected our lives drastically.I never want to have sex or be touched there ever again.I just want to cut the whole thing off and be rid of it,just to not feel constant pain.
I had to walk to work yesterday as my car is broken down and man I am in pain today.
Sorry for all my negativity and whinging in my second only post,but I know how you are felling,and I do hope reief comes for all of us.

Ok guys. I promised God that if he helped me find a cure for this horrible, life ruining, afflicting, 24/7 misunderstood condition, I would share it with everyone, as I have done TIRELESS research, read every book, scoured the net, and consulted with many doctors. Im 32 years old.
Ive always had a problem with painful sex, and a constant burning vag, but recently I was diagnosed with something far more horrible. Interstitial Cystitus.
Painful Bladder syndrome. Many women with Vulvodynia, many times have interstitial cystitus aswell, and I do frequent UTI's and I control them with a daily probiotic, but this particular bladder infection would not go away. Guys, this condition has literally ruined lives. Women hav e to go on disability for it. Imagine a voracious, raging UTI that never goes away. ever. and there is no cure. Its one thing not to be able to have sex, or sit for too long, or wear anything tight. But to be aware of constant, swollen, urethral frequency and burning, having to go to the bathroom every five minutes, cant sleep thru the night, the pain is compared to Cancer. People have to go on methadone, and antidepressants over it. Anywho, After I wept and begged on my knees for God to cure me, and help me, and even called a prayer line (LOL!!) and cried on my moms shoulder, (she prayed with me for a cure also) I made an appointment with a Urologist in Cleveland, Ohio at the Cleveland clinic. The best in the country. I got diagnosed with Ureaplasma, and Im currently on a strong 30 day course of antibiotics, (augmentin, zithromax, doxicycline) then I will be on long term antibiotics for the duration, until I test negative, which could take over a year.
Many people dont know too much about Ureaplasma, so please, please google it, and try to find a doctor that will hear you ,and test you. There are links to this with V too.
The test is expensive, and many doctors havnt even heard of it, so you have to shop around. because Ureaplasma is linked to IC, (urethritis) it is also linked to infertilty, miscarriage, and premature birth. Maybe shop around for fertility doctors, say your trying to get pregnant, and your concerned about Ureaplasma. Its worth it guys, I feel 100% better now that I am taking the proper treatment. This little bacteria is prolly the the one responsible for a lifetime of pain, and ruined relationships.
The oils. I make suppositories with coconut oil, (frozen, in sport bottle ice cube trays) with various essential oils, and Ive been able to have a sex life and sometimes, pain free sex life, since I started this. The thing is. You have to rotate the oils, I learned this. For a couple of years I was just using tea tree (and douches are horrible by the way, please dont put them in douche, been there, done that) after awhile, it didnt work and I didnt know why. The Boric acid suppositories. Worked for awhile, then didnt work at all. Then Myrrh oil. Which is great by the way. Then lavender and rosemary oils. Also awesome. Then Tyme oil, and oregano oil. Awesomness. Also, grapefruit seed extract is great too. Now Im doing Geranium oil, and its the skin of my vag is very soft and supple, non itchy and completely burn free. It feels strong, and healed...Im totally down for sex atm ), but currently single again (..but yea. Start out with a few drops, first few days, then work your way up to where you feel comfortable. I use quite a bit, especially for raging pain or infection, but everyones different.

JMCMIL, WOW another person with LCS. Your the first person I have found who has the same thing. My gyno says I have Vulvodynia as well. May I asked how old you are? Im only wondering because Im going through perimenopause and Im thinking that may be one of the reasons why Im having such a difficult time getting this to settle down.

I wish you well.

Hey Shebby, I have yet to ask my Gyno about upping the dose, perhaps the next time I see her I will ask. Thanks for the suggestion. I saw my gyno yesterday and she is putting me on some more meds. She is such a sweet heart too. She is letting the office know that if I call, they are supposed to forward the call directly to her. Im lucky to have a Gyno who really cares.

Shebby, I forgot to answer your first question. lol. Im on 150 mg's twice a day.

Hello Deprived, WOW, LCS sufferers are crawling out of the woodwork. I know what you mean about wanting to just cut it off. Your story sounds so much like me. Hang in there girl. hugs.

BP Cookie,
I am 36 yrs old, 37 next month. The dermatologist I saw diagnosed me with the Lichen syndrome and a gynecologist diagnosed me with vulvodynia so who knows which is right..I'm so frustrated right now and have had a horrible burning pain day today. I hope you find some relief, just like I hope we all do someday!!

Hang in there!

I'm having a really bad day today This pain is killing me.It feels like from the top all the way down to my bottom has a branding iron on it. I really want to self medicate,my partner has some Oxycodone around here somewhere from an operation he had. at least it will knock me out. This is so frickin unfair!! Why does this crap just happen out of the blue ?!?!?!?
I'm a little hysterical at the moment

Hello Deprived, Im so sorry that your suffering so much. Ive been having a few bad days myself. Last night my pain lvl was up to a 9. I just couldnt stand it. I had taken a Lyrica which did nothing, so I took a muscle relaxer too but that did nothing, then I took a Valium and that brought the pain down to a 7+. I finally fell asleep with an ice pack between my legs.

So honey, I know how you feel and your right, this is no fair. My burning travels down the buttock area just like yours does. I dont even have a damn ice pack big enough to cover the entire area. One of my gyno's told me that some women are taking condoms, filling them with water and freezing them. I dont think freezing them would be a good idea but putting them in the fridge and making the water cool may help.

Also, speaking of self med.ing, before they put me on Lyrica I used to use Hydrocodone to help with the pain. Sometimes when I take Lyrica I will add Hydrocodone to it. At times I really dont give a damn how dangerous it is to mix meds because Im in so much pain.

Try to hang in there. hugs

Cookie

I CANT STAND THIS ANYMORE!!!!!!! Vulvodynia, Lichen Simplex Chronicus, constant bacterial infections and yeast infections. I cant wait to see what else they come up with. I just want a Dr. to cut the entire thing out. I dont use it anymore so it wont be missed. Just throw the entire damn vagina away. Then I can go on Ebay and buy a NEW vagina.

Damn useless Gyno's giving me a number of useless medications to try and every friggin single one of them have failed. I thought that Lyrica was the miracle pill but hell NO, it was just a tease. Im tired of these Dr.s giving friggin hope and then the treatment fails just like every other treatment.

Im tired of this, day in day out, every hour and every single friggin DAMN minute of every damn day. Im 48 yrs old and I can not imagine having this for another 20-30 yrs. HELL NO!!!!!! Im so angry but I dont know who to be angry at. I just want to punch Mother Nature in her friggin face.

Im also tired of having to put on a show for ppl. I have to pretend that nothing is wrong, that Im feeling just fine but in reality it hurts like a bitch. Sometimes I dont even want to be around ppl.

Im just plain friggin fed up and I want this damn, useless vagina to be gone!!!!

Hey your too cute to be in this much pain! I'm cindy. I'm 50 and I got one yeast infection that ruined my life and my v! No darn doctor would help. I was told vulvodynia, then lichen planus(spelling on that is wrong) Anyways, got a tube of clob Ointment. Has to be ointment. Dabbed some on the lichens spots, gone in four days. That took care of that. But if you have any lichen check out your medicines. I was on blood pressure meds. Googled them. Known to cause lichen planus.
Went from doc to doc. One gyno wanted $200 a visit. Not one doctor would try and even test for yeast. So I went to my primary care PC. He didnt know what to do. So I told him I wanted diflucan. Lots of it too. I was following along with another lady who had a v specialist. We guessed some kind of hypersensitivty. Her doc put her on one diflucan per week, to calm things down on the cellular level. Thats what I did too. It took ONE YEAR. and it has helped tremendously.** Not cured ** still have flares**but at least not feeling like you are now. Because i remember that! I feel sorry and bad for you!!I even had a brainy microbiologist friend helping me. Because no doctor would! was it yeast in my system? dont know. My theory is the diflucan kept it down and that gave me the time for the skins to heal somewhat and stop burning. Now that much diflucan seems kind of radical, and i was scared to do that. but it did help. Took long long time tho. Its really sad no doctors have anything any good for us all. cindy

Hello, Thanks for the info. about googling my meds., Im going to do that today. Also Ive talked to one Gyno about the theory about yeast and being on Fluconazole for a year. So she put me on it for six weeks to see how it went. Unfortunately that Dr. left the practice. Ive seen a number of Gyno's who keep putting me on it but only for a short period of time and after Im done with the med. I get a YI once again. I wish I could see just ONE Gyno who could help me.

Also, if I may vent about something else. Im Bipolar and this Vulvodynia has caused issues with my mental health. I have asthma and when I get stressed, frustrated or cry, I cant breath. I have Chronic back, shoulder and neck pain which hurts every day, all day long, just like my burning bush does. Stress, depression, frustration and crying causes my back to hurt worse. Its just a HUGE circle. I have a medicine cabinet with a HUGE amount of meds that didnt work and I have another cabinet with the meds that I have to take every day. I have so many meds that I dont even know what the Hell Im supposed to take and when Im supposed to take it. OMG my mind is losing all its brain cells. uuuggghhh

Ok, vent done.

Hey, its me again. See? thats what they did to me. They would give me two diflucans, and think that was enough. Because the drug company advertises it as a one pill cure.?Then to get rid of me, the one gyno, oh its menopause. But it wasnt. The yeast came on after an antibiotic and never left. Or it created such damage, the skin just burned and burned. Got another friend, took the diflucan for over a year. But i'm thinking it takes alot of it, to even help. Way more then 6 weeks worth even, to calm it all down. We are thinking, that after the intial yeast infection, the body sort of gets yeast hypersensitive. The skins too. But heres an idea. Is there a doctor that you could BUG so much, that they will do it, or try it, to just get rid of you? Its worth a shot. Like call them up alot. LOL complain. Course, play it by ear, see how it goes. On the bipolar, I totally understand, because I have lots of anxiety, and such a bad neck , go to the chiro 3 times a week for thirteen years. I got so furious, as if I needed this v problem along with all my other issues! the burning crotch. It was destroying my life. If you did get your hands on some, your still gonna not feel good for awhile. So you'd have to be patient. The diflucan will make you feel better for a few days, then it comes back, kick it back down with another dose, so on, and on and on. But i dont think these doctors know what to do about these kind of problems. And when it comes down to it, they dont want to hear about it either. One doctor told me not to come back!!! another thing i did along with the diflucan was nothing. Dont put anything down there. Because it seemed to me, any little thing, even olive oil, would fester it all up. burn burn burn. what a Nightmare it was. Feel bad for you. Thats why i came back and posted what i did. Hoping maybe it would help someone. Because that is ALOT of diflucan i took. Most people dont want to do that. but it worked. Or at least get you down to feeling enough better, you can think of something else besides the darn pain. cindy

I also had a lot of butt pain to start. And, then I read a lot about doing the stretches for the Pudendal Nerve...and going to the chiro. That did help for the butt part (it took about a month of stretching)...hasn't done much for the inner thighs or anything. Of course, that pain may all come back. Who knows.

I had like a burning butt pain type of thing. That finally left. Bugged my chiro, who was a guy too. Kept telling the poor guy to fix my V! LOL but he couldnt fix it. Its gotta be nerve related somewhat? dont you think? even tested for herpes(longshot) i was hoping for herpes, anything, just an answer! Nope. still till this day the only thing i know is it all started with yeast. How did yours start? was it a medicine? something must have started it. If it was a medicine, can you tell me which one? i like to file these things in my brain. Then I yack and yack to other people, and ask them what started theirs. looking for a connection between us all. I'm still on it, even tho i'm doing better, because it would be nice to run into someone who cured themselves.

Nope, never tried it before. Heck, I never even heard of it until now. It makes a lot of sense though. I had went to a clinic who does pelvic therapy but I found out that my health ins. wouldnt cover it so I had to stop going. The ppl at these ins. companies who make these kinds of decisions need a swift kick in the ass...or in the crotch. They dont give a crap about anything but their damn money. They are quite willing to take your money but they dont like to pay it out.

I have a chiro. and Ive been meaning to see him but I have so many health issues that keep me at home that I just havent had a chance to see him. My chiro is this young and innocent kinda guy. I think if he would friggin turn red and run out of the room if I said "Hey doc., my crotch is on friggin fire and I think you have the cure".

Thanks for the reply.

Im not sure what caused this. There is one thing that happened to me about 10 yrs ago. I ended up getting vaginal warts. They itched like a motha. My Dr. had to freeze them off with that really cold stuff. They came back two more times and the last time I asked her to burn them really deep. She did it and I never got them back but it did leave a few scars. Also I used to have lots of YI. A few years ago I found out that I have thyroid problems. There may be a connections there. Some ppl with thyroid problems develop Hashimoto Disease and I believe I read that ppl who have Hashimoto's also can get Vulvodynia. Now Im going through peri menopause which is screwing up my hormones and when my hormones are out of whack, then my crotch gets out of whack as well. On top of that, Ive had 3 bacterial infections with in 5 weeks. So my Gyno put me on Miconazole(sp) gel to cure the bacterial infections BUT, Im allergic to Flagyl tablets and Miconazole IS Flagyl but just in gel form. Now I have a friggin rash all over my back and stomach because of it. So now I have to go on another damn med. to get rid of the damn rash.

Yea, I totally understand about the anxiety attacks and the bad neck. You poor sweet heart. When it rains it pours. Its just a never ending friggin thing. I go to a support community for my Bipolar, WebMD. They also have a back pain support board as well. Also a Womans Health board, depression board, you name it. I even have my own support board on WebMD called Grumpy Groupies. Your welcomed to join if you would like. We mostly goof around and tell jokes to make each other laugh but every now and then there are some serious subjects ppl want to talk about. Heck I even talk about my burning bush. lol

So if any of you girls get depressed about this, your always welcomed to come to my board. We can usually make you laugh.

Take care
Cookie