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» Anyone been to see Dr.Claire Bailey in Birmingham?
Tue Aug 15, 2017 6:36 pm by Kezz

» Recently Diagnosed.... Help!
Tue Aug 15, 2017 2:57 pm by amyhp

» Vestibulectomy
Sun Aug 13, 2017 9:54 am by infinitelywondering

» Discomfort from my own liquids
Sun Aug 13, 2017 4:27 am by Hopeitworks

» Anyone else have burning on the front of thighs?
Sun Aug 13, 2017 2:20 am by Hopeitworks

» Partial Vestibulectomy
Sun Aug 13, 2017 1:38 am by infinitelywondering

» Anyone being treated by Drexel University???
Sat Aug 12, 2017 8:50 pm by Hopeitworks

» Post Vestibulectomy Pain !!!
Sat Aug 12, 2017 8:00 pm by sj17

» Pain management - what works for me
Sat Aug 12, 2017 9:58 am by sj17

Partial Vestibulectomy

Mon Jul 31, 2017 6:44 pm by JGD13

Hi all i am new here.
I had a partial vestibulectomy 21/7 for my provoked vulvodynia.
After a painful few days and feeling quite uncomfortable it seemed to get better. 1 week after i noticed some white stuff and gloopy discharge, it wasnt smelly or itchy but i got a check up at the gp surgery and the doctor said the stitches looked fine and i could just have a touch of thrush. He said this is …

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: 3

Anyone from the PNW?

Sat Aug 05, 2017 7:54 am by jungleclover

I'm located near Portland and I would be really cool to actually meet someone with this issue. I think my roommate in college technically had this problem. She had an overgrown hymen removed and can't deal with penetration as a result. But she is gay so it seems like it hasn't been a huge problem for her (although we didn't talk about it much so there was possibly more to it than she let on). …

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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 …

Comments: 22

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 …

Comments: 1

New to the site and just had a vestibulectomy

Fri Aug 04, 2017 12:19 am by Hopeitworks

Hello Everyone,

I have been suffering from vulvodynia for years! So I decided to go ahead and have vestibulectomy on July 28, 2017. I really wished I would of found this site before I went through with the surgery. Maybe I would have been more prepared to deal with recovering. I just need someone to talk and I dont mind hearing your story.

Comments: 2

Post Vestibulectomy

Thu Aug 03, 2017 6:15 pm by infinitelywondering

Heya,

I had my vestibulectomy (full) about a day and a half ago. I was very sick and poorly just after the op and experienced intense pain down there Sad

However, today I came home and have done the following things:

-washed with warm water
-applied manuka honey to the area
-ensured I wash at least 3 times a day and dab the area dry gently
-use frozen peas to stop the swelling

As of now I am …

Comments: 0

can anyone recommend a good dermatologist in LA?

Thu Jul 27, 2017 4:17 pm by saffron

Hi, I am wondering if anyone knows a vulvar dermatologist in Los Angeles? My problems seem to be external, but I'm having trouble finding a knowledgable doctor. My current dermatologist is pretty cosmetic based and I'm afraid all the products he prescribed actually made my situation so much worse!

I know there a few drs in Orange County/San Diego, but was hoping to stay local as even …

Comments: 3

Vulvodynia and IVF? Anyone done this? What does it do to the vulvadynia?

Sun Jul 30, 2017 1:03 am by Carolyn4

Hi everyone,

I have had vulvodynia since age 27--I am now 43 and it has been in pretty good remission.  I control it with acupuncture and herbs, and some cranial sacral therapy.  I have a 5 year old, had a pretty uneventful pregnancy which ended in a c-section.  My VV worsened after that, and I have worked hard to get it back under control (it took over a year to get it back into pretty good …

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Hard to exist on the planet at the moment.

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Hard to exist on the planet at the moment.

Post  stablercake on Sun Oct 14, 2012 5:51 pm

So I'm 25 and I've been recently diagnosed with vulvodynia by my gyno after 2 1/2 years of intermittent (generally provoked) pain. My pain always comes with anxieties and especially the anxiety during sex when my mind runs a loop of expecting pain and the anxiety of my phobia of spontaneous urination in public (this fear is totally irrational, it's never happened to me). My original pain came on when my phobia of spontaneous urination started over 2 1/2 years ago and I got really horrible burning vulva and urethra symptoms. I finally went to my GP who examined me and said nothing was wrong. Well, basically I tried to forget about it but the burning didn't completely go away, especially during bouts of anxiety. I attributed it to "normal" (like a frog in progressively boiling water) and after 6 months or so got my first boyfriend at 23 years old and the anxieties disappeared and were replaced by romantic joy for a while. It usually hurt during sex, but I tried to tell myself that usually it felt better than it hurt and plus I would have felt like a total prude bitch if I turned him down. I tried to mask the pain and not usually tell him and the times I did tell him, he seemed sort of exasperated with it so that made me tell him less and less.

Well lately it hurt more and more and I even thought I had a yeast infection and my GYN had me treat with the 7 day monistat which just made the pain worse. Finally one night I had anal sex with my boyfriend in August (just as an FYI not the first time) and it only felt good even after the loop of pain thoughts. After I had a successfully pain-free sexual experience after being in pain for so long, it dawned on me that it's not normal for it to hurt. I went back to my GYN who performed a million tests that came back normal and then the q-tip test and diagnosed me with vulvodynia.

Well needless to say I was extremely heartbroken. Before the panic I was such a sexually-driven person and I've only had one boyfriend of 2 years and I feel like I'm letting us both down. Our sex life is in the toilet, it hurts too much now that I know it's there for sure so I'm petrified of being aroused because even that hurts. Something that should be so enjoyable has become a nightmare. I feel like I'm a horrible girlfriend. I'm trying to be good and give HJ/BJ's often, but I'm afraid that eventually it won't be enough. Even those used to get me semi-aroused, but now they're just chores I have to do like laundry or taking out the trash.

He's been very supportive and told me that as long as I'm trying to get better that he would stand by me. Of course, I'm still afraid that it won't get better and he'll just get fed up with me being in pain and depressed about it and just leave. I think some of the most annoying things are that he doesn't like talking about it and that he doesn't quite understand how bad it makes me feel. He keeps saying the HJ/BJ's are fine for now but on some level, I don't really care what he thinks is fine for his sex life. I potentially don't get to have a sex life ever (I know, doom and gloom pessimism I'm sorry). He can leave anytime and find another girl who has sex with him and it doesn't hurt her but I wouldn't feel ok trying to get another boyfriend because I'd feel like I'd roped him into a no-win situation. He can't fathom that this is probably lifelong (and I know there's treatments but even my GYN told me it would probably come back in waves) and he can't fathom that it's not something I can just "stop thinking about" and it'll be cured, it's not that simple.

I've been trying to get better over the last couple months, I got into therapy 2 weeks ago to cut down my anxieties and use lidocaine periodically which works temporarily, I take cranberry pills for the painful urine and calcium citrate for likely nonexistant oxalates and a probiotic (femdophilus) and will soon be starting Cymbalta (from my GYN, not the therapist) as soon as my horrible insurance company decides that they want to cover part of it (because I mean doctors just give out prescriptions like that when we don't need them all the time, I really hate this country). Since none of the other vitamins or pills really do anything (the cranberry pills help my urinary symptoms somewhat) I'm trying to fight the pessimism.

I thought I was getting better about thinking about it and trying not to compare myself to normal people, but it all came flooding back. Yesterday a good friend of mine somehow got on the topic that she'd be really unhappy to be a woman if the bearing of cramps and periods weren't rewarded with multiple orgasms. I wanted to fucking punch her. She knows about my condition and she knows that my sex life is in the toilet because it hurts to even start sex. I orgasm maybe once a week with external stimulus and have never been able to during intercourse. I didn't need the reminder that life and my relationship would be a whole lot better if I didn't have these broken sexual problems.

Anyway I'm feeling somewhat pessimistic this morning about my outcome and am afraid I'll be scared of all the sexual things I enjoyed before all the panic started and that part of my life is over at age 25. I'm looking forward to taking the Cymbalta and trying to forget all the horror stories I've read online about how nothing works.

Anyone else had vulvodynia start with anxieties? I'm petrified of my prognosis...

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Re: Hard to exist on the planet at the moment.

Post  Sapphire21 on Sun Oct 14, 2012 6:44 pm

Hello stablercake,

I am so sorry you are feeling so pessimistic, I think that is totally normal though. I recently wrote a post on pain being linked to OCD, and if you feel yours started with anxietites then perhaps seeing a pyscho-sexual counsellor could help?

If it is linked to anxieties and no physical reason for it then you can overcome it, it won't be easy or quick but it is possible. At least that is what my counsellor told me and I now have faith that I will be cured. Do you use the dialators? They have helped me a lot as your muscles are probably really tight now as you expect pain.

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baby girl!!

Post  lavrose on Mon Oct 15, 2012 2:43 am

please read my posts. I wouldnt wish this nitemare on my worst enemy. You can get your sex life back, please check out my posts!
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oils...

Post  lavrose on Mon Oct 15, 2012 2:50 am

I do multivitamin supplements, and essential oils, like tea tree, lavender, and rosemary and geranium oils in a coconut oil suppository that I make with sport bottle ice cube trays and I melt the Virgin coconut oil down, add a couple drops of whatever oils I want and freeze them and make suppositories. Currently Im using geranium oil, and its working great, but in the past I used tea tree, rosemary, manuka, etc, etc...

I also changed my diet, and started adding ALOT of supplements. This is a battle and a daily struggle, but i have a great sex life now at 32, and I missed out for most of my life. I could barely orgasm either(just with masturbation) cuz it hurt me to even have a guy touch me down there, so I feel you girl, you are not alone, and Im a very jealous person,and I always felt a deep pain and loss at not being able to enjoy my most favorite thing in this world. Sex.

Im actually a nympho now, and I think alot of it is psychological cuz of what happened to me, being so deprived, etc.
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ABX

Post  lavrose on Mon Oct 15, 2012 2:53 am

because Ive had this problem so long, it turned out I had a bacterial infection, that I needed long term antibitoics for called Ureaplasma. This mite not be your problem, you mite just be having a long term stubborn yeast infection that nothing works for (had them too!!)

But in the last 3 or 4 years or so, things were worse than ever for me, and never ever going away with anything that I was doing, and it turned out I had an underlying bacterial infection.
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Re: Hard to exist on the planet at the moment.

Post  stablercake on Mon Oct 15, 2012 6:08 pm

Thanks for the replies folks

Sapphire21, I did read your post on OCD being a cause and having some compulsive tendencies myself it brought me some hope. I don't have any dilators but I've used a similarly sized/shaped item and it didn't bring near as much pain as the actual act usually did but it couldn't hurt to use them. I've been putting off getting dilators simply because they seem to be a bit pricy for a "maybe it'll work" thing.

lavrose, I appreciate your posts and I've seen them in almost every thread on the board, but I'm afraid I'm just not quite at the end of the rope yet to spend tons of cash using homeopathic remedies that might not work. Apologies if that comes off bitchy, but as the daughter of a doctor, I have a lot of skepticism when it comes to curing things with oils and supplements, especially since only one of the three supplements I'm currently taking is even doing anything and none of them are doing anything for the vulvodynia. I'm not counting it out, just holding off if my GYN one day says she can't help me anymore.

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Re: Hard to exist on the planet at the moment.

Post  Sapphire21 on Mon Oct 15, 2012 7:43 pm

I have found that with a lot of treatments trial and error is a way to determine what works for you. The dialators still hurt me but I am progressing through them and the pain is getting so much better - when I am in a good place pyschologically it can actually feel nearly good ( I am now trying to maintain that good place by controlling my anxieties etc) I would strongly recommend buying some - I am assuming you are in the US? I got them for free on the NHS (UK) so I don't know how much they are but they really are worth it.

The fact that it is less painful with dialators also suggests to me a fear of sex which could be something that a pyschosexual counsellor could help you with. Also perhaps you could try meditation?


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I completely understand

Post  katie220 on Tue Oct 16, 2012 9:51 pm

Hey, I totally know what you are feeling right now, and I really hope you get better.

I know the feeling when it comes to not being able to have sex with your boyfriend. I used to have sex with my boyfriend all of the time until this happened to me. It's been two years since this has happened and I am only 24 years old. Sometimes I blame myself thinking, "was it something I did awhile back? was it because I smoked or because of my diet?" Don't worry all of us suffering from this have the same thoughts going through our minds. I have been through SO MANY medications. Anti fungals, anit-biotics, boric acid and several different birth controls. I told my doctor over and over that bacterial vaginosis isn't the cause but he won't listen.

I am currently trying coconut oil applied on my vulvar region and it helps somewhat. In the near future I am ordering a product that I haven't tried yet. A woman with vulvodynia said it drastically helped her symptoms. Maybe you could try it too? Here is the link. Maybe you'll see some results. Good luck!

http://www.multigyn.com/

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Re: Hard to exist on the planet at the moment.

Post  raquelll on Wed Oct 17, 2012 6:07 pm

I'm right there with you - I'm in a relationship that is slowly being destroyed because my partner flat out says that the kind of sex we have (non-penetration, I can't always let him touch me) isn't enough. So every time we do try to have some sort of intimacy, I start feeling really negative and guilty and it's never a good experience. I sense we are moving toward a breakup, but it feels impossible to solve since we just moved across the country together and live in the same house and some of our work is together. So we rely on each other for everything.

Anyway, it's good to know that I'm not the only "crazy" one falling apart from anxiety over this. I hope everything works out for all of us! I just read a couple of books ("When Sex Hurts" and "Healing Pelvic Pain") and those helped me think about this in a more hopeful way. I'm going to see a vulva pain specialist but I'm also going to try to work on some natural healing techniques like topical essential oils and relaxation and therapy and stretching my pelvic muscles. Have you tried any of those things?

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Re: Hard to exist on the planet at the moment.

Post  Ceriane on Fri Oct 19, 2012 2:29 pm

Hi, is there anywhere you can get the coconut oil from in the UK and the multi gyn products?

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Re: Hard to exist on the planet at the moment.

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