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Constant pain, I want to die.

Fri Jun 02, 2017 4:29 am by Meggiemay

I posted on here a few years ago but my symptoms went away with the inflammation. I didn't get so lucky this time.

For over three months, i've had terrible rawness, burning, soreness in the urethral/vestibule area and pressure/hypersensitivity in the clitoral area. I've also had some lower abdominal pressure and burning on my butt. I can barely walk! My gyno hasn't been much help. I'm on …

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Clitoris Issues

Tue Apr 28, 2015 8:17 pm by January

I am going crazyyy trying to figure out what's wrong. Please does anyone else have an issue similar to mine? I'm only 22. So, basically when my clit is lightly rubbed, there is no feeling. However, when rubbed vigorously and directly, the burning and tingling sensations shoot down my legs and feet as if coming to the end of an orgasm but with no good feeling leading up. It's so strange. What …

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New member

Sat Mar 18, 2017 7:37 pm by Lisa1627

Hi ladies. I am new to the forum. I have had what I think is vulvodynia caused from hsv 2. So not only do I have the burning vag but the constant feeling of being contagious. I can honestly say that I hate my life and myself right now. There are days when I think I would rather be dead. I tried the amitryptline and it helped but if it's only making my brain think I don't have pain then it's …

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Post Full Vestibulectomy - 5 Years Later - Please Read

Tue May 02, 2017 6:18 pm by jen007

Hi All,

It's been awhile since I've written a new topic on the forum. Wondering if any of the same ladies are still here. I've come back to update you all on my post vestibulectomy results. I can't remember if I've done an update on my current state, so forgive me if this is repeated information... I can't remember how to view my old posts! Anyway, let me get on with my update.

For 4 years post …

Comments: 3

Recovered from Vulvodynia

Thu May 04, 2017 9:42 pm by chancesunny

Hey everyone,

Im a new member on this forum and wanted to share my story so I can help anyone who is feeling helpless. Maybe what worked for me can work for you. I'll try to make this short so you can go get better!

I had vulvodynia for about 3-4 years. In the beginning, it started with pain that I thought was just a yeast infection and then I thought it was a urinary tract infection or …

Comments: 2

New here, my story and looking for advice

Wed Apr 26, 2017 9:02 am by rachiecakes

Hi All!

I was really hoping to get some feedback from everyone here - it's very hard dealing with an issue like this because no one really understands what I'm going through!

Im 28 years old I've had interstitial cystitis for 3 years - but never an vaginal issues. About 6 months ago I got a yeast infection following a course of antibiotics - similarly I developed IC after a bad UTI. The itching …

Comments: 4

New w/ Secondary Provoked Vestibuldynia

Wed Apr 26, 2017 11:46 pm by Birdy

Hi everyone,

I'm here because I'm pretty sure I have secondary provoked vestibuldynia, even though my gyno is still "optimistic" it is not.  My problem started six months ago when I got my second UTI in as many months (after going 25 years of life without one) and then ended up with a bad yeast infection (also my first one ever) thanks to the antibiotics.  Ever since the yeast …

Comments: 2

Male visitor

Wed Jan 18, 2017 11:19 pm by outsider

Hello!

I am a 25 year old guy who has erectile dysfunction following an injury a few years ago. I am here because I think that men and women with sexual dysfunction could benefit from dating each other. My experience has been that women have lost interest when they found out that penetrative sex was not possible with me.
So I am interested in learning more about female sexual disorders. Do young …

Comments: 3

New Here: Question/My Story

Mon Apr 03, 2017 2:00 am by overit14

Hi everyone. I came across this site by Googling "vulvar pain support". I feel like my case is different than most I read about so I was wondering if anyone else here experiences this in the way that I do.

This started in 2012 and has happened off and on since. I get really, really red and it's very painful, swollen and burns. Sometimes it may be a little itchy, but mostly it just …

Comments: 6


Constant Burning Pain. Vulva Lichen Simplex Chronicus

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Constant Burning Pain. Vulva Lichen Simplex Chronicus

Post  BpCookie on Mon Feb 04, 2013 9:08 pm

Hello all you girls sitting on an ice pack. I see a lot of ppl talking about flare ups. What are flare ups? I have Vulva Lichen Simplex chronic, does any one here have it also? I can not find anyone who has this. I have constant burning pain on my entire Vulva, all the way to my pubic hair and sometimes the burning goes down my butt cheeks to my inner thighs. I am terrified that it will just continue to spread out even farther. There are times when I don't have much pain, but thats only for an hour or so. uuuggghhh. So friggin frustrating. Over two years ago my gyno took a biopsy and told me what I had. She said there was no cure but there are treatments. So I wasn't worried at all.....until the damn treatments did not work. I went from gyno to gyno, to specialist, tried everything (way too many things to list or remember). It just continued to get worse. The burning has increased and spread out. So I wonder, is it because the treatments didnt work and this is how LSC feels? Just gets worse? Or is it something or every thng the Gyno's gave me? Could it be that the treatments made it worse?

One month ago I had a Ganglion Par RFA. The surgeon stuck a needle in my tail bone, it took about 30 seconds and it was all done. Seems to simple and quick to me. So I have to wait for two month to see if it works. That doesnt make any sense to me at all. I have one more month. The time goes by way too slow and it feel like one day is actually a month. I really don't think the damn thing worked. First they did a useless Pudendal Nerve RFA and that didn't work. Nothing works. I'm tired of this. I WANT MY FRIGGIN LIFE BACK!!!!!!. I want to go to movie theaters, out to dinner, have friends over, go swimming, wear shorts and pants, go spend time with family members and friends, have sex with out pain, get rid of this fear that my husband will find someone else, stop this crying, stop the depression and stop this pain.

I just don't understand all of this. I am a good person. I'm kind, I care about others, so why did I get this? Its so unfair. I had a crappy child hood. My step mother hated me and made me feel ugly. I thought I was ugly up until I met my husband. Then, for a short time I felt pretty. Now I'm menopausal, my hair is falling out, I look like Im 60 and Im only 48. Im depressed on many days. I'm draining our savings account because of this friggin LSC. My husband is worried about money and is afraid he won't be able to retire. All because of me. What the Hell am I supposed to do? My pain specialist better figure this out soon or I am going to have my entire friggin vulva cut out. Hell, I don't need the thing anymore. Throw it in the trash. I really don't care.

Signed
The Burning Bush
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Erosive Lichen Planus

Post  Kelle_Belle on Tue Apr 09, 2013 12:48 am

Hey! I have Erosive Lichen Planus! I have to go to bed now as I'm dead on my feet, but if possible, can I catch up with you at some point, even if its just to compare notes?! I'm so pleased to have found you! I can hardly find any info anywhere to do with it?? I'm currently taking Lyrica, Cymbalta, Tramadol, magnesium and calcium everyday, top dosage on all but it helps for the most part, oh and of course i have a frezzer full of what i lovingly refer to as my fanny bottles which help alot! Well I hope to talk to you soon?
Take care and i'm hoping you are as pain free as you can be.....Kelly x
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Re: Constant Burning Pain. Vulva Lichen Simplex Chronicus

Post  BpCookie on Tue Apr 09, 2013 9:02 pm

Kelle-Belle hun, OMG, someone else with Lichen. Ive never heard of Erosive Lichen, what is that? How long have you had it? What are your symptoms? I am so curious if its like mine. If you want you can email me at runracy@msn.com. Just let me know that your from the Vulvodynia community. I would love to exchange info. Also I have a support group online at WebMD called Vulva and Vagina Pain Support Group http://exchanges.webmd.com/vulva-and-vaginal-pain-support-group . I created the support group because WebMD didn't have any support groups that dealt with this condition. Its brand new and there isn't many members but you are more than welcomed to join.

Right now I take Lyrica and I use Amatryptaline ointment, it numbs the area. I also use A and D ointment after every time I use the restroom. Sometimes when it is really bad, I take a Hydrocodone on top of the Lyrica. I also have Tramadol thats prescribed for my back pain but I also use it for the LSC. Today I saw my Gyno and she added Cymbalta to my mix. I hope that works. I've been seeing a pain specialist who has been doing different procedures, burning the ends of the nerves. They have done three different procedures, burning three different groups of nerves. The first two procedures failed. This last one that I had, I have to wait a month before I can even tell if it worked or not. They said it will make the area hurt even worse for about 2 weeks. Oh goody gum drops, I can't wait. uuuggghhh.

Oh and my mood has improved. I'm not depressed and bawling every day, like I used to. After two years of this crap, crying, being depressed, I finally accepted my LSC and accepted the fact that I may always have this. I pretty much said "Screw this, I just don't care anymore. I will just take my pills". It worked, I don't cry as often as I used to.

Its very nice to have met you. Ok, Im outie. Gonna go sit on my ice pack.

hugs to you
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Re: Constant Burning Pain. Vulva Lichen Simplex Chronicus

Post  Kelle_Belle on Thu Apr 11, 2013 12:04 am

Hey Cookie babe! I must apologise for my late reply, I live with my mum and she's not in the best of health, I came on last night but had to come off pretty sharpish. I hope your well and the cymbalta is getting into your system. What dosage are you on? I take the highest, 60mg in the morning and 60mg in the evening, my doctor is currently unimpressed with this and is insisting I come down to the minimum, I don't think so asshole. I take such a high dose because of the depression, I'll be honest, I wanted to die, see I'd finally got to a stage in my life where I liked myself y'know, I was braver, I was looking after my mum and trying to give her anything she wanted (which is'nt much to be fair bless her) my dad left her for a tart and stuck her with his debts....I made it through all that with nothing, i felt like I could do anything. Then one morning, bang, I woke up thinking i had thrush and thats what I was treated for for the first 3 months, burning burning, shooting pains, pinching and pulling sensations, like someone was hammering a huge nail through my clit, the sickening feeling that someone was dragging a knife scraping over an open wound, urination would brring tears to my eyes. I stayed in my bedroom, crying and wailing in pain, rocking backwards and forwards racking my brains to figure out what i'd done wrong....checking myself down there constantly. I was deep blood red all the way from my pubic hair to my bum hole. I felt so swollen and I could barely walk but I one day managed to get ready and go to the gum clinic and they checked me over down there, they were amazed at the colour of me and also that I'd been using thrush cream for so long which caused my skin to burn even more and react, they found two tiny blisters down there so sent off all the tests, which all came back negative. I know now that the blisters and bumps are part of this.
My periods have stopped to so my doctor who thinks Im the biggest waste of time ever, reluctantly sent me to the consultant at the hospital, I was told i had vulvodynia, given gababpentin andd sent on my merry way. I was also prescribed amitryptaline which i can eat like sweets so not effect or so I thought. The gabapentin worked for a week, then it came back full force....I started taking 6x the nornal dosage with anything else I could get my hands on, I was so drugged I could barely talk, the pain didnt go but I was safe inside my own mind, I thought something had to give, either I would die or the pain would stop. My poor, beautiful mammy had to try and deal with me while fighting with the doctors who said I was crazy and that I would just have to stay as I was cause this is all they could do, to coping with her illness and running the house. We have a forster child, a lodger, 2 german shepards and 2 cats who are achient and needy little sods. I started suffering with side effects, my legs arms, hands and feet swelled so much I thought they would burst, my phorisis came back on my knees an strangely on my wrists, I was a wreck, I wouldnt go outside, get dressed or washed, I just sat with icepacks between my legs.
Eventually, the local hospital discharged me becasue they gave up on me, said there was no more help for me or different drugs, lying bastards. The only decent thing they did was refer me to Nottingham Hospital, I waited but didnt get my hopes up, I darent. In the meantime I started checking out the medications I was on, I noticed lyrica and assumed it was only in America but it wasnt! I could have it here! My mums friend had checked out her own pain tablets and thought I should try Cymbalta instead of the Amitrip. I went to see the lady doctor at my surgery who was reluctant to give me the drugs, which led to a war of wills and she gave in! Ha! A small victory for me and my mam! They started to work almost straight away, after 3 weeks, I was getting up in the morning and cleaning, buzzing like a bee round the house, happy as a pig in poo! my mam nearly fell over when she saw me! She said it was having a glimpse of how I was 6 months earlier, Its been pretty consistant since, yes I have bad days, a few bad weeks to be fair, when i should have my period seems to kick it off......Anyhow, my appointment for Nottingham came up and off we went.
It was amazing! They listened, they believed me! They didnt think i was a crazy freak seeking attention, They actually believed in me! The doctor talked to me and I explained everything to her, she cared, I was examined, which made me cry. She noticed the rash on my arms and legs and asked about it, I said it was psoriasis but it had never been this bad before and i havent had any rashes for 10 years. She called the chief consultant in who was very lovely and polite, who had a look then asked me to get dressed, i was so scared they would have seen nothing but I need not have worried.
I was told I have Erosive Lichen Planus...basically my skin is absorbing itself, burning away, effecting my nerves....I dont have any bits down there anymore, they've just rubbed and been absorbed back into my vagina. Its a mess, its horrible to look at. God when she told me I wept and wailed, its sounds silly but I was happy, I had a name for the pain!! Someone believed me!! They gave me cream to apply sparingly, Dermovate, and a wash, Cetraban, which I have to use everytime i shower, I cant let water on its own touch my bits, its drying and to harmful to my skin, which explains why it always made me cry to shower. I'm seeing them again in June, they couldnt biopsy me because I was too sore down there, so hopefully next time.
Its nearly impossible to find info on the condition, the most \i can find is some patronising cow on youtube saying her fanny hurt for a while and now she feels all better, which adds to people and Drs thinking women with Vulvodynia and Lichen, well anything to do with our bits, is just us being highly strung, its unfair.
Your group sounds amazing, I will join for sure! There are none at all for our problem, I'm so pleased youve taken the time and thought to do it, well done you babe! truely awesome, you should be proud lady! Also have saved your email address too! Mine is miss_noir@hotmail.co.uk, feel free to message me anytime! Those treatments sound horrible bless you, but we will try anything to feel like ourselves again. My Auntie had Lichen planus, she was one of the first to ever have the surgery here, it was experimental and it didnt work, she was always in pain and damn me to hell, i didnt listen. Now shes gone and I can't even tell her she wasnt crazy, I cant say sorry for being a selfish spoilt bitch. I'm learining a lesson now though.
I'm glad your mood is improving babe, its a horific condition which robs us of dignity, makes us not feel like women, worthless. How do you cope? How are you and your husband coping with things? I know you mentioned money worries which wont be helping either of you at all, me and mam must have spent a fortune on creams and lotions, and vitamins, but yoiu do don't you, you'd sell your soul if you could. Do you have children?
Its unfair how cruel life is, how some people swan through life with no problems or cares, then there are others which no matter what they do and through no fault of their own, their lives are full of pain and worry, hardship and fear. I wish I could give you a hug, you sound so lovely and brave, and believe it or not, you are beautiful, your stunning, you have sparkley eyes and a beautiful friendly smile..... please don't forget that. I really hope we can talk more, even if its just to rant! Good days and bad days, your a good person and you'll never be alone becasue people radiate toward you, your funny and quick and refreshingly open. I too have accepted the fact that I'm stuck with this cruel trick forever, that after good days there will be bad, never to get my hopes up, just to try the best I can. I'll never have a relationship or love, i dont feel like a woman anymore, no one is going to cope with this. I was seeing someone when this started, he didnt understand and left because i was fridgid lol what a charmer right! Anyway I'm alive and I'm going to try to do all I can, while I can, I have to.
Well, I'm off to smoke a ciggie and settle down to try and sleep...I really hope I get to talk to you again soon, obviously there is a slight time difference but i'm sure we'll pop up at the same time at some point! Thank you so, so much for replying and taking the time, it means alot to me....please be brave and take extra good care of yourself, speak soon hopefully babe, night night Xxxx Kelly Xxxx
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Re: Constant Burning Pain. Vulva Lichen Simplex Chronicus

Post  BpCookie on Thu Apr 11, 2013 4:37 pm

Hey Kelle-Belle Honey bunny, LMAO re- I don't think so ass hole. hehehe. You sound like me, I'm always saying stuff like that. lol.

First let me say that I am constantly on Lyrica and it screws up my brain really bad at times, so if I go off in a different direction, or blah balh balh about nothing, or I don't make sense, then thats why. lol. Anyways, I got to a point where I wanted to die also. I didn't want to kill myself but I would have been happy just to die. I made a promise to my husband that I would never try suicide.....again. I'm Bipolar and before the LSC started, I was really stupid and tried suicide three times. So I made a promise that I intend to keep, no matter how bad this gets. My Bipolar is pretty stable now, thank God.

I was at a really good point in my life when all this started also. I had a F'd up childhood. My step mother was extremely cruel and abused me mentally, verbally and physically. I grew up thinking I was ugly and stupid. I made every mistake that I could have when I became an adult. I married a drunk and wife abuser when I turned 18. Divorced two years later just to end up in with every psycho that I ran across. Then Married some ass hole with 4 kids and we ended up having a little girl together. She was the only thing right about that relationship. After leaving his stupid ass I finally met the most wonderful man. I met him over the internet. I lived in Az. USA and he lived in England at the time, in Coventry, do you know the place? btw, your English sayings and phrases, crack me up, I love it. lol. Anyways, after a few years we got married. He made me feel pretty and smart. I had all kinds of confidence, my life was great, we went on vacations, went to parties, went to pubs, we had a ball and then all of a sudden this f'ing shit happens. I wondered what I had done wrong, why I was being punished. It just seems no fair. I finally straightened out my life and I get hit with LSC. I was pissed, depressed, wanted to die. So, just wanted to tell you my back ground story. I understand how you can feel on top of the world one minute and on the very bottom the next. I'm very very lucky to have my husband. He is so understanding and kind. He is always willing to help me any way he can. I have become quite the unlucky person when it comes to health. I'm a wreck from my burning bush to my head. All I have left that works are my arms and legs. uuggghhh.

I really feel for you hun. I know how it feels to grab every single pain med. you can find, get so drugged up that you can't think straight but yet still be in pain from Hell. My stupid Gyno, who discovered this, put me on Amatryptaline first, total fail. Then put me on Gabbapentine, total fail. Those two meds are shit!!!. She wouldn't do anything else for me. Thats when I became extremely depressed. One day I just said "fuck this!!! I am NOT going to lay here suffering, I am going to do something about this". So I searched until I found a vulva specialist. Saw her for 6 months, she tried everything, every kind of ointment, lotion, suppository, pill, even suggested HCG injections (which I had to inject myself in the stomach every day for two months), all a total fail. I fell into a depression again. Then once again, I got pissed off and started looking for a pain specialist who would take my case. I must have called 30 pain specialist and all were afraid to touch a vagina. LOL. Morons!! Finally found one that would take up my case and they are the ones who have been doing different procedures. Although, the first two procedures failed and this last one I'm not sure if it worked or not, at least they are trying to fix the problem. At least they are doing something, ya know?

My Gyno just put me on 30 mg of Cymbalta, once a day. How long does it take before you feel a difference? I just started taking it the other day and so far all it has done was make me more drugged up and stupider. LOL. Get this, one night I had taken Lyrica, Tramadol, my muscle relaxer, Hydrocodone (for my chronic back pain) and Valium, I was in another world. Me and the hubby watched a movie that night. The next day I am watching this funny movie and LMAO, I go and tell hubby that he just HAS to watch this movie with me cause it was so darn funny. He comes into the room, looks at the tv and says "We just watched this movie last night. Don't you remember it?". LOL uuuummm NO, I didn't remember it at all. uuggghh.

So, your b/f left you because HE couldn't handle your V problem??? What a stupid selfish dick!!! He will get his one day. I can't imagine what you are going through. OMG, your own skin is eating away itself. It sounds absolutely horrible. You poor poor sweet thing. You look so young too. You know, I thought I had it bad, constant burning but not only do you have burning pain, your vagina just disappeared in the most horrible way imaginable. I'm sitting here shaking my head in amazement. To be going through such a painful and disfiguring thing and to be still going on with your life, is amazing!!! Your an amazing person. You are a roll model for anyone going through this. Here you are, writing to me when many ppl would be curled up in bed, hiding from the world. Can you imagine how many women have taken their own lives because of this. Its heart breaking. I wish I could reach out to all of them. It just makes me cry to think about these women who are on the very edge and ready to jump all because of this stupid crap.

Ive been Bipolar for 14 yrs and it took me 6 yrs to find a support group on line. I found WebMD and btw they have great information on just about everything, they have a Bipolar support group that I have been a member of for over 7 years or more. I learned from other Bipolars not to judge others (except for stupid Dr.s and cheating men) and how to be supportive. WebMD eventually made me a Health Ambassador. I now have two support boards that I made, one of them is the one I told you about, another one is called Grumpy Groupies and was made for ppl who were depressed and wanted a good laugh. I am also a member of other WebMD support boards called, Womens Health, Sexual Health, Sexual Abuse, Pain Support and the Bipolar support group.

So, tell me all about yourself. Like your age, if you have ever traveled out side of England, ever been to the states and anything else you want to add. I'm an open book and will answer any question you ask. Smile Oh, here I am yacking your poor ear off and what I should have done was just emailed you. So, I'm off to do just that.

Take care honey and take each day one step at a time.

Big hugs
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Re: Constant Burning Pain. Vulva Lichen Simplex Chronicus

Post  Kelle_Belle on Thu Apr 11, 2013 11:11 pm

Hey gorgeous! Hows you? You had a good day? Thank you for your email, it really cheered me up, I've had a pretty bad afternoon and night so far, too much pain today, I think its the steroid cream the consultant gave me to use, apparently it will get worse before it gets better, which is great but its not his vagina that's throbbing and burning away! Oh my, what a funny complaint to have eh babe?! Did you find that when you told your friends or family what was happening, they looked at you like your head was on fire? just kinda belittled the situation? I find it hard telling people whats wrong with me, they don't seem to realise the impact it has everywhere else, not only your body and mind, how you use your body, the way you think and feel, your confidence and how you approach things? I was scared to go outside for months, when I did I couldnt stand it, slowly i'm doing better, thats why days like today totally get on my titties!!
Lyrica doesnt really effect me like that I'm afraid! gabbapentin did, mixed with diazipan and amitrip, it was the most effective it ever was! I fell that deep asleep in front of the fire, i woke up at 4 in the morning with a burnt ass! Thats how I felt regarding killing myself, i just wasnt bothered about waking up, there was no point, who wants to care for a bealing, wailing heap that couldnt even bring herself to get a wash and brush her hair? I dont know how you managed, especially batteling bipolar as well....My aunt who had Lichen also suffered with Bipolar bless her, she was diagnosed pretty late on in her life, her doctors and i'm afraid to say most of our family just thought she was a nasty bitchy cruel old lady, poor old bird, it wasnt her fault. I'm glad youve got it under control, youve got to be pretty precise with the medication Ive heard. I'm glad your attempts didnt work, because I wouldnt have a friend right now would I huh?! So I'm very thankful for your failure in that department young lady!
Coventy is in the south midlands from me, about 2 and a half hour drive, I'm froma town called scunthorpe, its vile, ugh, but its home! Is your husband english then? Im glad you found love hun, he sounds lovely too! My friend met her hubby online too and their little baby is due any day now! Are you close to your daughter? I hope you are, i bet your a loving mum. Your stepmother sounds like a right nasty piece of work, vile creature, what a bully, no one should be made to feel like that, you were a kid, to have your self worth destroyed at that age or in fact any age is appauling. I do not wish your stepmother well, is she here or being totured in hell for being a mega bitch??
Well darling, your arms and legs come in pretty useful to be fair, but a burning fanny and walking round like John Wayne is not what every woman wants to be a thriving part of her enigma, maybe together we can make it into a fashion accessory?! Fashion Fannies!!
Good for you fighting back, thats what I did, me and my mammy, we went on an internet mission, hunting down every bit of info we could, we tried everything in our power, not much helped but we gave it a shot, the changing point as ive said was the lyrica and cymbalta..erm, it took a week or so to get into my system, but im on a much higher dosage than you, they told me to build it up gradually but fuck that, i banged myself straight on the highest, i was fighting depression too and I was hopeful it would help, and it did, i woke up one morning without burning, i even peed without crying! I didnt stop cleaning and tidying and cooking for a week till it started to hurt, but that was my fault for not bloody resting! i just wanted my mam to rest, id left her with everything to do and i felt so terrible relying on her when it was me who was supposed to be looking after her. Fingers crossed you have some improvement soon, check with your gyno if you feel you need to up the dose, the side efeects only last for 2 weeks so you should be less foggy headed then lol oh bless ya! Pair of druggies we are! lol your poor hubby, imagine forgetting watching the film with him, bless his heart lol oh gos, ive fell asleep while having conversations! Foegotten basic words, nearly set fire to the cooker and kitchen! aah the joys of 9000mgs of gabapentin, only time the shitty pathetic drug worked when i was abusing it!!
Yes he left me, hedged his bets with some other bird who's fanny worked and dumped me! Yeah stupid selfish dick sums him up pretty nicely hun, it broke me down at the time, i was already feeling ugly and disgusting, like an unloved freak, i was in hospital when he sent me a text to tell me, i thought my head was going to explode, i went in the bathroom and just sobbed, i just didnt know why me? id always said i would end up alone y'know, im a pretty akward person to be fair, but the fact the choice was taken away from me broke my heart....Ive often thought that hun, just how many women have got that low and treated so badly, that they just decided to go, its a scary thought, facing this alone must be horrific, I pray to god that no one ever has to be alone with this hun, i really do.....
I'm not amazing but thank you so much, i'm just a strange woman from england with an even stranger fanny! Like audrey 2 in little shop of horrors lol raaaaa!! im trying hun, I have to now, looking back at how low i got, i promised my mam i would get better and im going to do my best....the pain is nothing like ive ever felt and im too scared to look down below, i'll be like a barbie doll soon i imagine. Our pain is the same gorgeous lady, we are both brave, we are both surviving the cruel disease, pain is pain and we both have had more than enough for a lifetime. Your a role model, youve done amazing things, youve created help where there was none, with information and support for a whole range of things that effect all women, your the role model babe, not me, you deserve more than what fate has given you, your so warm and kind, im so glad i found you!!
Im 32 yrs old babe, i guess this is it now for me, im glad i managed to reach the happiest part of my life before i was struck down with this. I have had to give up work though, i worked in a takeaway which i loved, i loved chatting with the customers, i had a big funny mouth so i was kinda popular, i cant stand for long now and because this is so unpredictable its not fair on my bosses....I havent been in love though, not proper love, i thought i had been but it was just badly judged lust. im sorry i'll never be loved like that but at least i will never be hurt like my mammy was...Ive never been to america but ive always wanted too! Ive been to austria and bulgaria with my mam and my cheating bastard of a father, he went skiing, me and mam went window shopping and sight seeing!
Erm, i was kinda wondering if you still y'know?! Err, get freaky baby?! if it hurts? How do you deal with things like that? id like to know in case it ever happens to me again? what treatment have you found most effective? How do they know which nerves to burn? arnt you scared? Your mega brave you are, but to be honest, if someone said they could heal it forever you'd do anything, i know i would babe..... well its time for a brew and a ciggie! Thank you again for the email! It was lovely to wake up from my snooze to it! Erm, my mammy reads our messages, shes happy you see that ive found you to talk to and that we can share things, shes going to type to you after ive gone, so dont think i have dual personalities, its mammy! lol speak to you soon gorgeous, i look forward to your next book!! the last one was a mega read! Take care you ok, nighty night poppet xxxx
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Re: Constant Burning Pain. Vulva Lichen Simplex Chronicus

Post  Kelle_Belle on Fri Apr 12, 2013 12:08 am

Hello Cookie this is Kells mum Sandra.....its so nice for my daughter to have someone to talkto who knows the pain she suffers.Its broken my heart to see her suffer so much and be unable to stop the awful pain.I wish people who have said its all in your mind could walk a tme in her shoes and see how they cope with the pain.for nearly six months I lost my darling daughter and in her place was a stranger who just wanted to hide away until the next round of drugs put her into oblivion for a few hours.We had to sort out the drugs for ourselves........Our doctor was fairly ok at first but because she is on such a high dose he is getting edgy incase of side effects.Just because we can now give this illness a name does not mean it is cured as he seems to think.For the last six months our lives have been turned upside down.......up all night and catching up during the day.She had a bad day today ....the bastard just came out of nowhere.She still battles on though.....we are hoping for some relief in the next few days.......it always starts up around when her periods should be and for a few days after........if men suffered the same pain there would be a cure by now......will chat later ......love to you and your family.......it is one o'clock on friday morning and we are sat having coffee and toast....Kel has had to take extra pain killers plus some morphine.......I dont know how she is still standing......but I am not going to bed and leaving her alone xx
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Re: Constant Burning Pain. Vulva Lichen Simplex Chronicus

Post  Kelle_Belle on Mon Apr 15, 2013 11:23 pm

Hey Gorgeous! My emails down so I can only reply on here, I hope you get this message! How are you? Whats been happening? Hows the Cymbalta treating you? I'm glad you had a good day the other day babe, its amazing to feel like yourself again, its the heartbreak if the pain comes back, god I hope your pain doesn't come back, I hope it didn't return, one of us will be back to ourselves one day I'm sure, you deserve it babe.
Ugh, I haven't had a good few days, pain has been back with avengence since saturday night, more Lyrica. more Tramadol and a cheeky couple of shots of Morphine for good luck, unfortunately to no avail....todays the first day I've been able to get up and about, makes me want to give up. I try to face things as a test, if I get through this round then the next one should be easier to confront, telling myself its going to go, chanting it over and over quietly to myself like a blooming nut job?! hobbling round the house, trying to find something to do to take my mind off the pain. Its a good job no one wants a relationship with me really! Who in their right mind would put up with a freak like me?!
I was thinking earlier about how much I've changed, I feel like theres something missing with me and it turns out there is....sex. It sounds so shallow but it makes up a part of how I used to be, not just physically, mentally too. I feel like a giant moose right now, the Gabapentin and the Lyrica has heaped the weight on and try as I might to fight the fat, I can't move like I used to so it clings to me like a giant flabby koala bear. My confidence is at an all time low too, ugh ugly bugly menatlist that I am! Wow I'm such a giant moaner!
I think I'm just going to have a cry I think, that will help, well it better had do, I have no money to buy things needlessly on ebay lol
Well I hope I hear from you soon, I'll keep trying to email but apparently I have a faulty something or other! I could have told them that lol
Fingers crossed things are going well, catch you soon babe, why can't you live next door?! If you have a facebook add me!! Kelly Sugartits Drummond I will explain the sugartits another time!
Night gorgeous, going to have a good chanting session after blubbed! Xxxxxxx
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Re: Constant Burning Pain. Vulva Lichen Simplex Chronicus

Post  Kelle_Belle on Sat Mar 14, 2015 12:27 am

Cookie, are you still out there?? X
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Re: Constant Burning Pain. Vulva Lichen Simplex Chronicus

Post  BpCookie on Mon Mar 16, 2015 3:44 pm

Kelle Honey Bunny, Yes I am still here. I have always wondered what had happened to you since I hadn't heard from you in such a long time. I was very worried. I am so glad to hear from you. How are you doing? What have the Dr.s done? hugs
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Re: Constant Burning Pain. Vulva Lichen Simplex Chronicus

Post  Kelle_Belle on Tue Mar 17, 2015 1:34 am

Sorry babe, I kinda lost the plot for a while. Life throws you through a loop. I know you know what its like. How are you doing? Hows life? Are you still in as much pain? I always wanted to contact you, but the head space I was in was not pretty at all. I feel a total douche, so sorry..
Regards pain, I'm doing well, still on the same meds. Lyrica 600mg, Tramadol 400mg and Cymbalta 60mg. I'm also using Demovate but my gyno has written me up for Gabapentin cream, to see if thats helpful. I have morphine tablets as standby in case I have a bad one. Mr Nunns was brilliant, I cry everytime I see him, he listens and cares. He wants me to try having a group of women in the same boat as us, come round for coffee at my house. I'm a bit nervous about that, see how I get on! Erosive Lichaen, still freaks people out when I tell them, but I'm getting braver! Erm, I kinda went a bit mental and got loads of piercings and tattoos! I have bright blue hair now too! They want odd and freaky, I'll give them it!! I'm so so so glad you replied!! My mum says hi too!! xxxxxxxxxxxxxxxxxxxxxx
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Re: Constant Burning Pain. Vulva Lichen Simplex Chronicus

Post  BpCookie on Tue Mar 17, 2015 6:51 pm

Hi sweetie pie, Tell your mom I said "hi". I can't remember the last time I talked to you so I will just tell ya whats been going on. I found a great gyno who has done two surgeries to remove layers of skin. The second surgery seemed to help. along with my 150 mg of Lyrica twice a day. I sometimes add Tramadol. But here in the states is really hard to get pain meds. My stupid Dr. has cut my Tramadol down and its almost impossible to get hydrocodone because of the freaking DEA. I bet nobody who works for the DEA has a burning bush like us. Anyways, the burning started to increase again so my Gyno injected my vulva area with alcohol to burn the nerves. He had to do this twice. It hurt like a motha. The second time seemed to help but now the pain is increasing once again. So I may have to go back for another alcohol burn. uuuggghhh. So, I apply A and D ointment all the time, which seems to help a bit. Also I have Lidocaine 5% ointment that I rub in and it numbs the skin. I use that before sex but lately I have given up on sex because it just causes more pain. So poor hubby only gets Handies once a weeks. lol. I dont have to sit on an ice pack as much as I used to, thank goodness. The temp. here in Arizona is getting hotter so I'm sure that will cause all kinds of friggin probs.

I no longer suffer from burning of my butt cheeks and my inner thighs. whew!! So things are improving a little at a time.

Since I can sit a bit longer, I play a game called Lord of The Rings On Line, it keeps my mind off of things and I have met some nice ppl on there. Also I have been making jewelry just for the fun of it. I make it and give it away. Been watching some series on tv, The Walking Dead and Game Of Thrones. When Im in pain the shows I watch kinda keep my mind off of the pain. Kinda.

So sweetie, how have you been. What have the Dr.s been doing for ya? How is your mom? Also, I love the hair and also love tattoos. I have 3.

Send me some photos of your tats and hair to my email addy. Runracey@msn.com
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Re: Constant Burning Pain. Vulva Lichen Simplex Chronicus

Post  Kelle_Belle on Thu Mar 19, 2015 12:34 am

Holy fuck woman, they inject your fanny of fire with alcohol?? Ouch, seriously fucking ouch!! But, when the pains at the level I know you suffer with, you'll try anything, right? Lyrica really helped me, it was finding the right combo of pain meds and nerve medication. That and knowing you'll get there, it takes so long though, mentally and physically. I'm doing the same thing regards craft and hammering the TV with The Walking Dead!! Ha!! The way I've felt at times, felt like an extra walking round with a zombie fire fanny!! Ugh, relationships have kinda come along then buggered off when my freaky assed condition is discussed. People don't seem to get that I haven't done this to myself, I'm not dirty, I haven't got a sexually transmitted disease. So, I've resigned myself to potter alone, I don't think I'm missing much, all that's left over seems to be morons and loonies. I have enough to deal with!! Me and mum are still fostering, its going well, I think Ben came just moved in as I got poorly so I can't remember if I told you or not? Have you thought about increasing the Lyrica dosage? Why is it so hard to get pain meds? Your right, they would soon change their minds if they had the pain!! Ridiculous. I'm pleased to hear your butts doing better babe!! That's great news!! Mums not doing so good, shes been really down lately. I don't know how to help her. She worries about money a lot now as I'm not working. I'll figure it, I'll start drugging her if she doesn't smile soon!! Nah, I love the old bugger!!
Regards the docs and me, the last appointment I had with Mr Nunns, things hadn't got any worse!! Hi five!! Erm, the pain clinic have referred me for an operation on my spine, something to do with having a cage attached which would control pain? Sounds a bit scary, see what the consultant says!! I'm just glad I can see a future now. I couldn't before.
I will send you some pics darling! Ooooh what tats have you got??!
So what's happening with you? Hows your family? Hahaa, at least you have someone to give hand shandys too!! Your mucky as, its brilliant!! I've missed your outlook sweetheart! xxxxxxx
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A Newbie

Post  kmatt17 on Mon Aug 24, 2015 3:09 pm

So I just have been diagnosed with Lichen Simplex.. I have been dealing with this for a few years. My Gyno first tried to deal with my chronic Yeast infection. I suspect I would get those from my scratching. Finally she did a biopsy and gave me an answer. I'm glad I now know, but my research does not make me feel any better. I have yet to go to the Dermatologist (waiting for my appointment). I am using all sorts of creams, just to get some relief and trying not to scratch. Sometimes I go into the bathroom just to have a "scratch session". My anus and thighs also itch. So the more I itch the more I scratch then I get another yeast infection and the cycle starts all over again. I am so over this.

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Re: Constant Burning Pain. Vulva Lichen Simplex Chronicus

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