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Somebody please help me...

Fri Nov 24, 2017 8:05 am by Andlag

Hey everyone,

since I started being sexually active i often experienced burning in my vagina which was often worse during sex /around the time of my period or when using lubricants. I was never able to use tampons because the one time i tried putting them in it felt like acid was poured on my skin. Fast forward to 2 months ago when I got a UTI and an allergic reaction in my vagina. I thought it …

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7 years later and life looks bleak :(

Wed Dec 06, 2017 2:50 am by RainyShay77

So 7 years ago I had a case of BV...the antibiotic caused a horrible yeast infection which took 5 months to 'get rid of'. During this time I had allergic reactions to 2 of the yeast infection creams which magnified the pain. Over the past 7 years I've tried multiple rounds of physical therapy (they only slightly helped), chiropractic, nerve blocks, medications to target nerve pain (amitriptyline, …

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Amtriptyline, baclofen, gabapentin cream for provoked vestibuldynia

Mon Nov 20, 2017 8:15 pm by WVR00

Hello,
Has anyone had success with this cream in helping their vulvodynia? How long has it taken to help? I’ve had some success with it, but not completely better. I’ve been on it for a month. I️ was hoping to hear from some ladies who have had major success with this cream. I’m hoping for some encouragement here. This condition is so frustrating. I’m lucky enough to have access to two …

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Amitriptyline given for vulvodyina pain

Tue Oct 24, 2017 2:46 pm by katycrawford

Hi there,

After years of being misdiagnosed etc as most women have on this forum I have finally been diagnosed with vulvodynia (yay) and have been given the lowest dose of an antidepressant called Amitriptyline. Has anyone been on this before and has any positive (or negative) news to give me? Im feeling down already and I've only been taking it for a few days, I don't have much hope of it …

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New diagnosis, any advice whilst I wait for a specialist

Wed Oct 25, 2017 1:47 pm by Julesyjules

Hi,

I'm new here and wanted to ask for some advice whilst I wait to see a specialist nurse.

After urinary problems which lasted 7 weeks, I finally saw a urologist, who on examination discovered significant inflammation and called in a gynaecologist, who diagnosed vestibulitis. They referred me to a nurse who specialises in vulvar skin issues. That was 5 weeks ago, and I'm still waiting for the …

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Vulvodynia help

Tue Nov 14, 2017 4:27 pm by Katiej

Hi guys new here and newly diagnosed. So I had bv and then after alot of antibiotics and home remedies I still continued to have weird symptoms despite swabs being negative. Two seperate gynes have told me I have vulvodynia as a result of the area being overwhelmed. So first gave me lidocaine which xidnt do much. No I am on amitriptyline for the past 5 days. Seems to be kicking in a little (im a …

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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 …

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Newly diagnosed

Tue Oct 10, 2017 8:37 pm by Brevispink

Hello everyone. I have recently been diagnosed with unprovoked vulvodynia and would really appreciate some advice and support. I have had a chronic urine infection for 16 months and was on antibiotics for 9 of those months. I have been very uncomfortable for the entire time, but now I have absolutely unbearable stinging and burning all day with itching too. The infection has just about gone, …

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Recent "Poke" Pain - So Confused/Losing My Mind

Thu Oct 12, 2017 9:26 am by kelseybeth23

Long Story, but I am losing my mind and getting really depressed, so if I tell the full story maybe someone can help me.

Back in August I started to get an itch down there. Normally, in the past, when this would happen, I would change the way I wore my clothes, take more baths instead of showers, and use Monistat. This time, after about two weeks of no relief, I started to get concerned. I was …

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Biopsy, OUCH!

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Biopsy, OUCH!

Post  Kathye10 on Sat Mar 30, 2013 3:16 am

Hi Ladies,

I've only posted a few times about a month ago but have seen 2 more Dr's so I thought I would share my experiences (if anyone cares - haha)

The last gyno I saw suggested I see a vulva specialist since she couldn't figure all of this out. I flew to AZ from L.A. to see him (Saw that he had really great reviews and the specialists at UCLA had really negative reviews and the wait time was 3 months). At this point I was feeling about 75% better, but still could not wear jeans or sit at certain angles comfortably without burning. Long story short, He diagnosed me with Seb Dermatitis and VVS due to a drop in estrogen (he never checked my hormones, I'm assuming he came to this conclusion from my story?) He prescribed me 7 day Nizoral pills and gave me a Nizoral shampoo to use (I didn't use the shampoo because I feel all the creams/gels,etc are what got me into this mess in the first place) As far as the VVS goes, he said that the vaginal tissue should go back to normal once my estrogen levels balanced back out. I spoke to him on the phone about a week after I saw him because keeping a tampon inside was still a problem. He said I could try estrogen pills but they were super expensive and I honestly don't want to mess around with my hormones if I can heal on my own. Fast forward a week, I took the Nizoral pills and felt WORSE. Nizoral is an anti yeast because seb dermatitis is an overproduction of a certain type of yeast, still these pills kill regular candida too. I felt like I had a full blow yeast infection AND the seb on my scalp felt worse. What the hell, right? I called him on Monday left a message for him to call me back, never called. Repeat on Tuesday, hasn't called back and it's now Friday night. Nice, I flew to AZ for a Dr who can't even call his patients back? Desperate, I called a Derm who specializes in the vulva in Orange County and got an appointment for today....

I told her the whole story, and the specialists diagnoses and she thinks it's lichens planus. I guess the only way to know for sure was to do a biopsy. Of course, that made me incredibly nervous because I'd done so well at avoiding it thus far. She said I would feel a prick of the needle and that was it. She was right about that. She told me that I wouldn't even notice it after the fact and that there was no aftercare. LIES. I had plans for the whole weekend, they are now shot as I sit in bed typing this. Has anyone else had a biopsy? Was it painful for you as well? She did the punch method and stitched me up. I have to go back in 10-14 to have the stitch removed and then I guess I will find out the results.

Has anyone else been diagnosed with skin problems like these? Would be interested in hearing your story Smile
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Re: Biopsy, OUCH!

Post  Sarah001 on Sat Mar 30, 2013 3:21 pm

Hi Kathy, I haven't had a biopsy done but I know Naomi had a few done a while ago so hopefully she'll see your post. I did however get diagnosed with Lichen Planus, got given a strong steroid ointment which I tried despite the fact it hurt like hell and made my symptoms about 20 times worse, the burning was so painful I had a look at the area and found the steroid ointment had taken a layer of skin off in the vestibule and I was bleeding so I stopped it there and then. Went on to a vulvar dermatologist not long after and she said it definitely wasn't Lichen Planus, or any other type of skin problem and I avoided the biopsy thankfully. So it may or may not be the case for you. I think you can apply ice to the biopsy area if it's sore and resting should help it heal quicker. When I thought I might have one coming my way I looked it up online and found loads of women saying exactly what you've said and it was nothing like as painless as the doctors made out, why would it be though?? Hopefully you'll heal quickly and get some answers one way or the other. I have a friend who gets eczema on her vulvar, nowhere else just there, but she responds very quickly to topical creams and it doesn't bother her much.
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Re: Biopsy, OUCH!

Post  Kathye10 on Sat Mar 30, 2013 4:35 pm

Hi Sarah,

Thanks for your reply. So do you have an official diagnosis? Ugh, this has been so frustrating! 4 months of non stop Dr after Dr, diagnoses after diagnoses. The one thing I will say, as much as I didn't want to do the biopsy, at least it will either find something, or rule things out. I'm tired of spending all of this money to find no relief. I personally don't think it's Lichen's, but we shall see.

I'm so sorry you had to go through all of that No From all of the things I've done to myself (Tea tree oil suppositories, tampon diluted with hydrogen peroxide ,etc) and the things Dr's have had me do without real evidence, I empathize with you. The steroid creams burned me as well (which is why I don't think it's Lichen's)

I envy your friend with eczema at this point! I hope you are feeling okay this Holiday weekend Smile
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Re: Biopsy, OUCH!

Post  Sarah001 on Sat Mar 30, 2013 6:24 pm

Mine is pelvic floor and unstable pelvis related, I'm actually having a shit bank holiday weekend too as my loose SI joint is in a particularly bad flare and making me feel like I have pins and needles in the external vulvar area so quite pissed off myself!! I find when my SI is in place and I relax the pelvic floor my pain improves alot and after my bad experience with the steroid ointment I don't use things like that anymore either! I occasionally use a little bit of lavender oil in the vestibule which does help but mostly i don't apply anything. I knew I didn't have a skin condition before i even got the dermatology appointment as my pain became widespread and diffuse while I was waiting for them to send my the appointment details whereas before that I only had pain where the skin was red in the vestibule. As you say at least it will tell you for sure whether there is a skin condition even though it's a painful way to find out. I've also done the hydrogen peroxide thing but I did it with a syringe, not nice. I also tried cider apple vinegar diluted the same way which was very painful!! Mad isn't it?
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Re: Biopsy, OUCH!

Post  Kathye10 on Mon Apr 01, 2013 3:47 am

Sarah,

I'm sorry you aren't feeling so hot. I believe you told me before that you see a chiro or physio? How long have you had it for? Mad for sure, but we'll try anything right?
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Re: Biopsy, OUCH!

Post  Sarah001 on Mon Apr 01, 2013 1:21 pm

Hi Kathy I'm seeing a Women's Health Physio, chiro is too harsh for my joints with my underlying connective tissue disorder and osteos couldn't help me. Went through countless physios before finally ending up at WH and realising they know all about pelvic instability too so I should have been there all along but nobody mentioned this. I've had V for 3 years now and pelvic instability for 8 and a half, it was a physio telling me to use more pelvic floor during exercises and giving me exercises way too advanced for me so I clenched the pelvic floor that set off my V so it's obvious with me what the cause is. i had provoked only pain for a year or so before it flared up into unprovoked and wish I'd dealt with it sooner! How's the biopsy site doing?
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Re: Biopsy, OUCH!

Post  Kathye10 on Mon Apr 01, 2013 4:00 pm

Hi Sarah,

You are a trooper, girl! 3 years, I'm only on month 5 and I'm SO overrrrrrrrrrrrrr it already! Can you have sex? (if that's too personal, you don't have to answer) I'm sure once your muscles strenghten up you will be 100% better. It's amazing how a muscle group can cause pain in the hoo haw Crying or Very sad

Biopsy site is tender but doing okay. I read that it takes 7-10 days for it to heal and this is day 3. No infection (that I know of) so that's good. I was able to do some spring cleaning over the weekend and it didn't bother me. I just wore loose undies and baggy sweats. Hoping I manage okay today at work sitting on a chair for 6 hours, but then again that's our daily life at this point silent
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Re: Biopsy, OUCH!

Post  Sarah001 on Mon Apr 01, 2013 5:39 pm

No I can't have sex but to be honest it's not a big issue now as I'm single and I miss wearing jeans so much more!! Laughing Glad the biopsy site is on the mend, when do you get the results?
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Re: Biopsy, OUCH!

Post  Kathye10 on Tue Apr 02, 2013 3:26 pm

I know, I would be more excited to wear jeans again too! Men complicate things anyway! haha Razz

I spoke to one of the office assistants yesterday and she said it should take a week, but then again, I asked about the culture results and she said longer (usually cultures take about 4 to 5 days to get back) Thankfully the biopsy site is doing okay. The stitch fell out this morning (still going to call to make sure it's okay) Thank you for asking Very Happy
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Re: Biopsy, OUCH!

Post  Sarah001 on Tue Apr 02, 2013 8:53 pm

Glad it's going ok after biopsy level trauma!! Shocked I've had steroid injections in my loose SI joint tonight but they take a week or so to work and then it's onto potentially tightening prolotherapy which, if it works, could alter my life! I suspect once I get on top of this it's rabbits all the way for me and no added problems from men!! Laughing Let me know when you get your results, I'll be really interested in the findings. And make sure you spend some time relaxing while you heal. Wink
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Re: Biopsy, OUCH!

Post  Kathye10 on Wed Apr 03, 2013 6:15 am

Will do!! Keep me posted on how your treatment works as well. I'll be crossing fingers for the both of us, haha! Very Happy
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Re: Biopsy, OUCH!

Post  BpCookie on Fri Apr 05, 2013 3:47 pm

Hi hun, I had a Biopsy done by my Gyno and it hurt like Hell. She must have used a need the side of the Eiffel tower (not sure if the spelling is right). Then the crazy chick spread vinegar all over my vuvla which burned like a motha. Thank God the actual Biopsy didn't hurt but it did leave a scar. Was diagnosed with Lichen Simplex Chronicus. Then a year later I requested that my Vuvla Specialist do another Biopsy, that didn't hurt at all but she took skin from three places and had to stitch up one of the places. I ended up tearing the stitches. I went back to see her, told her about tearing the stitches and she said it was ok. So now I have three more scars but the same diagnosis. About 10 yrs ago I had vaginal warts and my Dr. had to burn them off my vulva three different times, that also left scars. My vuvla now looks like a an unfinished puzzle.

I live in Az. and I have had several referrals to Dr. Joseph Brooks in Phoenix at the Arizona Vulva Clinic but I have never went there because the drive is too far and driving for me is difficult due to this horrible pain. I was wondering if that was the Dr. that you saw? I am so sorry that he won't return your calls. Real professional of eh? Nothing like blowing off your patients. If you really want him to call you back, here is a little trick that I have learned. Call him every hour, on the hour, in the message tell him that you are HIS patient and you are paying him and its HIS responsibility to take care of his patients. I've had to do that in the past with a different Dr. and after the fourth message, he called me back.

Anyways, good luck to you dear. I hope things start to go your way very soon. hugs
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Re: Biopsy, OUCH!

Post  Kathye10 on Fri Apr 05, 2013 4:17 pm

Hi BPCookie,

YES! That IS who I saw, how funny! He finally returned my call after a week. Maybe he was on Spring break with his family or something. I didn't call him back because at that point I found a Dr (derm) who did the biopsy. I don't know how I feel about him honestly. He seemed really nice but didn't listen to that fact that I don't want to put ANYTHING else down there cream/gel/etc. Not even if I have BV or yeast. Effff that! That is what started all of this in the first place.

So tell me about your condition. I'm very sorry to hear it is so painful. Where in AZ do you live?
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Re: Biopsy, OUCH!

Post  BpCookie on Fri Apr 05, 2013 10:53 pm

Hey kathye honey, Im glad he finally called but a little late eh? I hope your derm. can help you. So what meds are you using to treat your issue? Have you got your diag. back yet? I can't remember if you said you did or not. I swear my brain is such a mess being on all kinds of friggin pain meds, I can't remember anything. Not even stuff I just read. LOL

So I have Lichen Simplex Chronicus, which is thickening of the skin. Ive had it for two years and it has only gotten more painful. I have constant burning pain and I also have this weird white discharge that comes and goes. Ive tried all the stupid oils, jells, lotions, potions, pills, you name it, nothing really works. I take Lyrica which take the edge off, sometimes, I use A and D ointment which helps, sometimes I use Amatryptaline ointment which kinda numbs the area and Ive went back to trying Lidocane which doesn't seem to be helping. I take a weekly dose of Fluconazone to kill yeast, thats a 6 month treatment and has kept YI away but has done nothing for the LSC. Have just had two procedures done and Im hoping they will work. Whew, that my issue in short. lol.

I live in Gilbert Az. in a nice little neighborhood surround by senior citizens which I don't mind at all. Im 48 yrs old and could use a little quiet. I am pretty much stuck in my house because of this LSC, back pain, Bipolar, Anxiety, some phobias, Im on disability and most of my friends are cyber buddies. I don't mind cyber buddies because they are the most loyal. So tell me about your health issues and how do you like California. Oh I wish I lived there. What I wouldn't do to be able to go to the ocean. Not that I could wear a swim suit but who cares if I show up nekkid eh? LOL
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Re: Biopsy, OUCH!

Post  Kathye10 on Fri Apr 05, 2013 11:08 pm

Hi BP,

Is Gilbert far from Phoenix? It was kind of cool because I stayed with a friend when I went there for my appt and got to see Sedona which was beautiful!

So is your condition acute or did it slowly start over a period of time? I will cross my fingers that your procedures work!!! I'm sorry to hear you are mostly housebound due to all of your health stuff. I have generalized anxiety disorder so I get it. I've been there. I actually seem to have some sort of "travel" phobia, which I dealt with while in AZ, booo!! Fortunately life is pretty normal except I cannot date right now, hoping that won't be forever....ugh. I have back issues but I don't think they are related to this. Mine started one day (from sex) and has spiraled since. I truly believe it was some sort of allergic reaction to whatever spermicide was on the condom or it threw my Ph levels off and just got crazy after that. I have been diagnosed and treated for 4 different types of bacteria's (all normal vaginal bacteria's) and now waiting for the Derm to call TODAY BEFORE 5 (haha) with my biopsy and bacterial/yeast culture results. This all started back in November of last year.

I grew up in the LA area and love it. There's no place like home!
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Re: Biopsy, OUCH!

Post  BpCookie on Sat Apr 06, 2013 8:17 pm

Sedona is very beautiful. I love it and have only been their once. The little shops are so cool. They have a bunch of crystals that are supposed to help different health issues. I wonder if they have a crystal for crotch pain? haha Phoenix is about an hour away, on a good day. If you ever make your way back to Arizona, you have to see the Grand Canyon. Just so you can throw a rock over the edge and tell ppl. that you threw a rock a mile away. Since its a mile deep in some places.

My conditions started out slowly and then increased with time. Its chronic not acute.

Oh man, spermicide is some horrible stuff. When I used it, it burned the hell out of my vagina and that was way before my LSC started.

I hope you get some good news from your Derm. Take care of yourself. big hugs
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Re: Biopsy, OUCH!

Post  Kathye10 on Sun Apr 07, 2013 4:02 pm

BPCookie my dear....I have 2 questions for you. With LSC, can you wear tampons or pads? Also, did this condition mess up your normal menstrual cycle at all?
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Re: Biopsy, OUCH!

Post  BpCookie on Mon Apr 08, 2013 3:40 pm

Kathye hun, 2 yrs before VLSC developed, I had an Ablation done to stop my periods. I was 44 yrs old. So I wasn't having periods by the time VLSC delveloped, thank God, cause I can't imagine having to wear tampons and pads. OMG, that must be a total nightmare for you gals. Also the wetness would have made my vulva hurt so much, I would have probably taken a steak knife and cut the entire thing off.

Ya know, if your a bit older and are done having children, I would consider opting for an Ablation to stop your periods. I can only imagine the 10 kinds of Hell this must be causing.

hugs
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Re: Biopsy, OUCH!

Post  Kathye10 on Mon Apr 08, 2013 3:49 pm

HI BP,

I'm still at child bearing age (35). Not sure if I want kids or not but would like the option still. Yeah, not being able to wear tampons comfortably is so frustrating! 3 months ago I was still fine wearing them. I'm hoping that my DR calls me back today with my biopsy results with GOOD news.....crossing my fingers that I'll be wearing tampons again soon. Geez, who knew I'd ever be happy to have a NORMAL, not effected by a steroid injection, period were I can wear a tampon....lol
Ah the joys of VVS.

Thanks for your response sweetie, hoping you had a good weekend Very Happy
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Re: Biopsy, OUCH!

Post  Sarah001 on Sun Apr 14, 2013 12:06 pm

Hi Kathy, do you have your biopsy results yet? Keep wondering about it!
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Re: Biopsy, OUCH!

Post  Kathye10 on Sun Apr 14, 2013 5:35 pm

Yes, I did! Biopsy showed no skin disease/disorder, thankfully. I have acute folliculitus (staph infection of hair follicles) which I have NO clue how I got, could have been gyno exam? I am on MORE antibiotics and the new Dr. found the same two bacteria's I had before (and was treated for but didn't go away apparently) It's helping the folliculitus but nothing else feels any better. Ugh, very frustrating. Thank you for asking!!
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Re: Biopsy, OUCH!

Post  Alana3 on Sun Apr 14, 2013 6:21 pm

Do you shave? That can help trigger an infection sometimes

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Re: Biopsy, OUCH!

Post  Kathye10 on Sun Apr 14, 2013 8:41 pm

Hi Alana,

Yes, I "trim" with an electrical girly razor (lol) which I've always done. I normally get like 1 or 2 of those ingrown hair things as the hair is growing back but this time it was alllllllllllllllllll over. I had bought a new razor after being treated with antibiotics last time because I thought the old one it might be "infected" somehow (this whole thing has made me a germ freak so I try my best to keep everything really clean). I wiped the new one down first with peroxide so who knows. Just weird since it's never happened before, ya know? Maybe all the antibiotic use has made me more susceptible to other "bugs." Just hoping this antibiotic works and it doesn't ever come back like that again! Hope you are feeling okay Alana Smile
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Re: Biopsy, OUCH!

Post  Alana3 on Sun Apr 14, 2013 9:28 pm

Haha we'll at least it's nothing horrible count your blessings! Smile

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Re: Biopsy, OUCH!

Post  Kathye10 on Sun Apr 14, 2013 11:07 pm

Everyday! Now if only antibiotics would make my vulvar vestibulitis go away, I'd be set lol
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