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» Acupuncture advice please
Today at 2:25 am by ryn207

» New and need some help
Today at 12:49 am by Sad

» Please tell me this can get better
Mon Feb 19, 2018 2:10 am by anon99

» Lichen Sclerosus
Fri Feb 16, 2018 2:47 am by ryn207

» MAY HAVE FOUND A CURE- PLEASE READ
Thu Feb 15, 2018 10:04 pm by infinitelywondering

» my rock bottom, psychological effects of vulvodynia, I told him he can leave me
Wed Feb 14, 2018 6:43 am by renegade_magdalena

» Some interesting information about nerve pain in general
Wed Feb 14, 2018 3:58 am by Athena

» Sore after using dilator for first time in a year
Wed Feb 14, 2018 3:45 am by Athena

» What helped me
Wed Feb 14, 2018 3:38 am by Athena

New and need some help

Wed Feb 21, 2018 4:30 pm by LindafromNJ

New to this site ad trying to figure out how it works.  I am trying to post as a new member so I am hoping this goes thru.  I am a senior adult and have just been diagnosed by the Drexil Vaginitis Center to have vulvodynia along with Vestibulitis (not sure if spelled correctly).  My symptoms are vaginal burning, itching, soreness around the vaginal opening with one spot in particular.  Some …

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MAY HAVE FOUND A CURE- PLEASE READ

Thu Feb 15, 2018 10:04 pm by infinitelywondering

Dear all,

Today has been the day I've been waiting for. The day something FINALLY makes sense.
I've been told countless times that I've got nerve damage or a muscular condition, yet none of the specific treatments have helped me. My GP suggested attacking this from a different angle so referred me to a dermatologist specialist


after having a vestibulectomy with no success, I decided to visit …

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NO PAIN DURING SEX

Sat Feb 10, 2018 12:18 am by rockylife

I HAVE NO PAIN DURING SEX, BUT I FEEL THIS BURNING SENSATION ALL DAY JUST BESIDE THE VAGINAL OPENING. DO I REALLY HAVE A VULVODYNIA? I'M CONFUSED.

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Newby not sure where to turn

Thu Feb 01, 2018 3:32 pm by Cerjo87

Hi this is all very new to me , well the talking about it bit is , the pain while having sex and also the uncomfortable feelings after and feeling like I have  sistitus most of the time I’m very used to , I’ve suffered for 7 years now I’m only 30 . Finally after all this time the doctors or should I say my gp has said I have Vulvodynia and have givin me gabapentin to try .i told her I’d …

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Looking for a friend..... and new problems

Sat Jan 06, 2018 11:38 pm by infinitelywondering

Hi everyone,

I hope you're doing well.

I hate to say this, but I feel beaten down and terribly alone. I had a vestibulectomy surgery about 6 months ago and I was absolutely praying it would work. It didn't.

6 months later and here I am, sitting on my bedroom floor crying my eyes out because I know I'll never be able to have painfree sex. I don't know what to do and just need a friend Sad



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Newbie to the site

Sun Jul 30, 2017 12:16 am by Ksa

Hello. Thank you for this wonderful site. I'm currently under the care of a dr in Phoenix that specializes in vaginal disorders. I will probably be on a suppository of estridol the rest of my life and I am currently on medications for a rare form of vaginitis that's pretty unheard of for my age. My vagina literally hates me. I've struggled with vulvadynia for 20 years, the duration of my …

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Vulvodynia from #metoo media coverage

Thu Jan 25, 2018 9:01 pm by dooleyhornberg

I am wondering if anyone else in this forum has experience an increase or flare up in their vulvodynia as a result of the coverage of the sexual abuse scandals in Hollywood, DC, and the recent gymnastics scandal. I have definitely had a flare up.

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So frustrating!!

Thu Jan 04, 2018 1:15 am by Hannah77

Well I'm back in pain after 7 years of pain free days.
I was diagnosed with vulvodynia when I was 17. I suffered for three years with horrible burning all day, painful sex with my boyfriend and just pure misery Sad I went into a spontaneous remission when I was 20. I'm still not sure how the pain stopped but all the sudden I could go an entire day without thinking of my vagina, sex started to …

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Looking for suggestions or encouragement

Sat Jan 13, 2018 12:10 am by ryn207

Hi there. I'm 25 and have been dealing with this for over a year and a half and I'm really starting to lose hope this will ever stop.

In July of 2016 I had a yeast infection. When Monistat didn't work I went to my gynecologist who prescribed Diflucan. When the itching didn't stop she retested me and found that my yeast infection was gone, but I now had a bacterial infection. After taking the …

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A question for ladies with PFD

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A question for ladies with PFD

Post  Kathye10 on Sat Apr 27, 2013 5:25 pm

Hi Ladies,

I hope you are all having a "good" day today! I am still trying to pin point my cause so that I can start working on some sort of relief. I'm having such a hard time emotionally and have a few questions for you that have spinal issues, or pelvic muscle problems. I have always had a bad lower back problems, but seeing the chiro helped a lot. This for me started with protected sex with a new male partner (previous to this I hadn't had sex with a man in probably 8 or 9 years) I was fine during and after sex, no pain at all. The next night I noticed that I felt kind of "yeasty" down there. To make a long story short, I have been on 4 courses of antibiotics hoping that the normal vaginal flora pathogens were what was causing the vulva pain, although they seem to help a little it never quite gets me to 100%. I have good days (still can't wear jeans) and bad days and I noticed that the only time I feel real relief is when I'm laying down, sleeping or just wake up in the morning. Once I start my day (on a bad day) it seems to creep on, and by the end of the day I just want to stay in and relax.

So do you ladies with PFD or spinal problems notice any of these things?....
1. Sitting on certain surfaces, irritate or cause more pain?
2. Do you actually have redness any where on the vulva?
3. Sitting in certain positions irritate urethra, bladder or rectum?
4. Only get real comfort when laying flat or sleeping?
5. Feel a tightness deep within you that you never experienced before?
6. Have flare up after you orgasm clitorally?
7. Get irritated by having longer pubic hair? (Maybe I'm the only one but it REALLY irritates the skin)

Thanks for taking the time to read this...any answers would help Smile



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Re: A question for ladies with PFD

Post  Sarah001 on Sun Apr 28, 2013 12:18 pm

Hi Kathy, in response from someone with definite PFD:

1. Yes sitting on certain surfaces makes my pain worse, to be honest though I never sit for long because of my SI pain though.
2. I have redness in the vestibule in a kind of U shape around the bottom of the vestibule and up either side which I'm told is typical of pelvic floor tightness for some reason (not sure why)
3. For me I get irritation of the urethra when I'm clenching the pelvic floor, sometimes the bladder too.
4. I am only comfortable when laying flat and if I'm having a really bad day pelvic floor wise a lay down for a while improves matters alot.
5. Tightness and soreness deep within
6. I sometimes get shooting pains around the vulvar after orgasm
7. I do find either shaving or trimming the hair makes the external areas feel less irritated yes but again not sure why!

Which area of your back does your chiro treat?
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Re: A question for ladies with PFD

Post  Kathye10 on Sun Apr 28, 2013 4:28 pm

Hey Sarah,

Thank you for taking the time to reply, that definitely gave me more insight. How is your therapy coming along?

My chiro pretty much treats my whole body BUT I mentioned pelvic floor dysfunction at my last session (I finally broke down to tell him what was going on with me) and he didn't know much about it. Ummm....time for a new chiro!! haha
I have issues with my L5 S1. I saw an Ortho a few years back who said I probably have a herniated disc, but I've never known for sure because I didn't want to pay for an MRI. Funny, because with this V issue, I've already spent thousands Sad

Where is your problem located?



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Re: A question for ladies with PFD

Post  Sarah001 on Sun Apr 28, 2013 6:37 pm

I have a connective tissue disorder so I have problems all over but the area that's causing my PFD is my sacroiliac joints, so your S1 L5 area would be the same issue in all likeliness. Chiros don't study the pelvic floor because they're all external work but some osteopaths do internal work and obviously women's health physios do too. Any instability of the pelvic area can set it off and we all know it can definitely cause V so it's well worth finding someone who knows about it. I know what you mean about cost, I've spent 11k on my pelvic pain issues and I'm about to add another thousand to that for an attempt at prolotherapy in one of my SI joints.
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Re: A question for ladies with PFD

Post  Alana3 on Sun Apr 28, 2013 8:51 pm

Oh the costs! 7,000 in physical therapy and about 25,000 in surgery. My suggestion is don't let the cost freak you out the relief is worth it. My acupuncture lady did womens stuff as well she.helped so you may wanna look in that direction as well as physical therapy so worth it!

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Re: A question for ladies with PFD

Post  Kathye10 on Mon Apr 29, 2013 1:47 am

Sarah,

Yeah, I have a feeling my SI joint could be a problem. how long is therapy suppose to take to fix it? Geez, that's a lot of money Sad What is prolotherapy?

Alana,
Wow, $25k for the surgery? Holy cow! So you feel like acupuncture helped?

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Re: A question for ladies with PFD

Post  Alana3 on Mon Apr 29, 2013 10:33 am

Yeah it was expensive but insurance.helped. Acupuncture helped but it wasn't anywhere close to what the surgery did for me. Like once the nerves were removed my entire provide floor relaxed considerably but I know surgery isn't an option for everyone so try acupuncture what's the worst that can happen? Keep in mind it's maintenance if you want good results

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Re: A question for ladies with PFD

Post  Sarah001 on Mon Apr 29, 2013 5:45 pm

SI joints have been the bane of my life for nearly a whole decade, they often stabilise in a few months but if severe like mine it can become impossible to do it with muscles alone which is why I'm trying prolo. Prolo is where they inject a solution (usually a sugar/water mixture) into the ligaments which sets of an inflammatory response (going to be a bit painful I think!) which causes the body to lay down extra collagen in the ligament and make it tighter and stronger so it holds the joint better. It isn't guaranteed but alot of people have good results with it especially in the SI joints. It's only available privately in the UK right now but seems to be more commonplace in the states so it shouldn't be too difficult to find a dr that performs it where you are. SI joints often keep slipping out of alignment over and over again which stretches the ligaments and makes them unable to lock the joint properly to transfer weight up and down the chain so the problems tend to spread everywhere over time because of one lousy joint. Our brains utilise any muscles they can to try and correct instability without any care about how painful it will be so the pelvic floor is often one of many made to spasm and fill with trigger points in an effort to stabilise the pelvic joints, it doesn't do a very good job at it either but as the brain can add lots more (think rectus abs/adductors/hip flexors/hamstrings/glutes/IT bands) it does just that until the whole area goes loopy. Check all those muscles above and if you have a pelvic instability issue you'll definitely find sore knots in most of them.
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Re: A question for ladies with PFD

Post  Loulou on Mon Apr 29, 2013 6:17 pm

Hi Kathye10

To answer your questions, when my pain was bad:
1. Sitting on certain surfaces, irritate or cause more pain? In the early days sitting on anything was painful! I found the vibrations of the car when driving particularly painful. I did occasionally sit on a donut ring which provided some comfort but was advised not to sit on it too long (sth to do with pressure 'collecting' in the exact spot where you don't want any more trouble)
2. Do you actually have redness any where on the vulva? I was red around the vestibule and on the inner part of my labia minora to about half way up, and sometimes all the way up to my clitorus.
3. Sitting in certain positions irritate urethra, bladder or rectum? Sitting upright with pressure directly on the vulva was worse. I tended to slump backwards and sit on my bum bones (if that makes sense) which i later found was not good for my back and pelvis.
4. Only get real comfort when laying flat or sleeping? Yes i spend a lot of time lying down in the early days! Lying on the floor with knees bent or with legs at right angles on a stool or chair was particularly comfortable and also eased my back and pelvis.
5. Feel a tightness deep within you that you never experienced before? Don't think i experienced that.
6. Have flare up after you orgasm clitorally? I went through a phase, when i was able to start having sex again, of having very painful orgasms (sharp stabbing pains in my clitorus at the peak of orgasm - not nice!) I did use to have a bit of a flare up after sex but that gradually stopped as i got better.
7. Get irritated by having longer pubic hair? (Maybe I'm the only one but it REALLY irritates the skin) Yes me too. But i didn't dare do any 'hairdressing' down there for fear of making it worse. I think I posted somewhere else on here on stuff i did to ease pubic hair related irritation (in response to someone elses query i think)

And just a couple of points relating to others' posts here:
- i too found acupuncture helpful for the pain in the early days. You need to blitz it at first - I was going a couple of times a week for a few weeks then gradually dropped it off.
- if someone can't get to see a women's health physio or prefers a chiro, chiros CAN help with PFD. As Sarah says below any muscular problems in rectus abs/adductors/hip flexors/hamstrings/glutes/IT bands can cause pelvic instability which can cause vulvodynia. Apart from an initial biofeedback assessment with a women's health physio all my support has come from a chiro. She has worked on all those muscles as well as alignment and it worked for me. In fact was probably a better choice for me as i'd had lower back problems which she has also helped with.

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Re: A question for ladies with PFD

Post  Kathye10 on Tue Apr 30, 2013 12:12 am

Sarah,
Do you know what caused all the pelvic instability for you? I really hope the prolo works for you! my Dr is checking me once again for bacteria to rule that out and if not, we are on to physical therapist to see if that truly is the problem. Thank you for always writing me back!

LouLou,
It sounds like you are doing a lot better. That's great! I will def try and find your pubic hair post (lol that sounds soooo funny) but it's true, it's REALLY irritating to the skin. When I could use my trimmer, it was fine but I somehow got folliculitis during all of this, so my gyno doesn't want me to shave, which I GET...lol I'm glad you had good luck with a chiropractor! If that was the case it would save me a lot of money! I've been going back and forth with this whole bacteria thing for 5 months. Of course, I'd be really glad if that is what is causing all of this, but I really wouldn't be the least surprised if my bad back was. Thank you for your response, I appreciate it!
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Re: A question for ladies with PFD

Post  Sarah001 on Tue Apr 30, 2013 8:25 am

Yes, for me it's my connective tissue disorder, my ligaments are all laxer than a normal persons because I don't produce good quality collagen which is a bit of a worry with the prolo. Add to that bad posture because we bendy folk tend to lock our joints to try and produce stability but it just puts them in end of range position which is too far either into flexion or extension and causes more problems. Plus some injuries of knees, ankles and SI joints along the way because they lack ligament support and it's a recipe for disaster! I'm working on better posture, basic core exercises, motor control and trigger points where I can do without them (not many places and I'm COVERED in them) and then I'm adding the prolo out of sheer desperation. Loulou is correct that chiros can help with the external stuff but if your pelvic floor needs work they won't be able to do any internal work so it depends on the state of your PF.
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Re: A question for ladies with PFD

Post  Kate1981 on Wed May 01, 2013 5:03 pm

Hi Kathy, the same as you my pain started with sex with a new partner previous to him I was with my last partner for 9 years. My pain also started a couple of days afterwards. In regards to your questions. Sitting in general causes more discomfort I find hard surfaces easier though than something soft. In the beginning I did have redness in my vestibule but now I don't have any. I don't have any pain or burning in the vulva the pain is deep inside my vagina a kind a sharp raw ache. I like you only get comfort from laying flat and when I'm asleep. In a morning I have no pain it creeps up on me throughout the day some days worse than others. My muscles are so tight inside and out and I feel they won't let go. I'm beginning to wonder if they have always been this way as all my partners have commented that I feel like a virgin. In regards to orgasm I have always found it very difficult and on the rare occasions I have they are very weak. All suggesting its my pudendal nerve as it controls the bladder bowel and orgasm. Longer pubic hair also causes more discomfort. I have obvious pfd high resting tone tight shortened muscles and nerve pain. My nerve is most painful over the obturator internship muscle and hip abductor. My pelvis was misaligned but it seems to be holding now but I'm covered in trigger points from my rip cage to my knees. I want more than anything to be normal again. I'm so down I've lost everything my boyfriend who I adored job house and me!

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Re: A question for ladies with PFD

Post  Kathy100 on Fri May 03, 2013 11:45 am

Hi Kathy

Bit late - but what its worth here are my answers:
1. The harder the chair the more painful it is for me! I avoid wooden or plastic chairs like the plague. I use a donut cushion at work as it's the only way I can manage a full day of sitting.
2. Sometimes I get redness around the entrance to my vagina especially when the doctor was experimenting with different creams
3. Same as Sarah - if I start clenching it irritates my bladder. Sitting forward is also hurts my vulva and my back /hips.
4. Lying down on my stomach is most comfortable for me, lying on my back used to be ok but now the pain has spread into back & hips this starts to hurt after a while. Standing is ok now. Also I feel more comfortable in the mornings - I guess because everything has a chance to relax. The pain then builds through the day especially if I'm sitting down. The physio is helping but it's 2 weeks since I've been & my muscles seem to be tightening up again. So many trigger points!
5. At the start I did feel an aching tightness high up but that wore off fairly quickly- because of meds - I don't know.
6. I didn't get a flare up at orgasm - the flare up would come afterwards for a few hours.
7. No probs with long public hair.

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Re: A question for ladies with PFD

Post  Kathye10 on Fri May 03, 2013 4:04 pm

Sarah - Connective tissue disorder, wow, how did you find out you had that?

Kate - It sounds like we definitely have some things in common. I find it easier to sit on hard surfaces as well because it supports my back better to which I can lean more on my butt. Soft chairs KILL the va jay jay! How long has this been going on for you? My is all vulva related and I have a lot of redness/rash which is why my Dr is trying to rule out and kill all pathogens. I had a vulvar biopsy and it just said I had inflammation with no skin disease causing it. My vestibule is red too. everytime I'm on antibiotics I get a lot better then when I get off them the pain comes back. I have a feeling it's a mixture of pathogens and PFD. I'm very sorry to hear about the emotional pain, I completely understand. There are many days when I sit here and wonder if I will ever be able to date again, have sex, etc. It's maddening, but I try my hardest to keep up hope. Are you doing PT?

Hi Kathy - It's very interesting to read everyone who has PFD's stories. Seems to be truly different for everyone. The one thing everyone seems to have in common is getting relief while sleeping. Are you doing PT?
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Re: A question for ladies with PFD

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