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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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Does anyone else experience this?

Sat Oct 14, 2017 5:21 pm by Angelmegs

Hi— im new here. Im incredibly desperate so if anyone has any suggestions i would greatly appreciate it. Im a 20 year old female with vulvodynia and vaginismus. I was on the birth control pill (junel fe lo estrin) from age 13-18 because of severe menstrual pain. I used the xulane patch for a few months when i was 18 but eventually stopped BC altogether because it interferes with my med for …

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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 …

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Do you ever worry that you're making it up?

Fri May 27, 2016 6:50 am by Lucci

Hello,

I was diagnosed with Vaginismus and Vulvar Vestibulitis 10 years ago. I was 18 and scared and moving across the country for college, but luckily was able to find a doctor who specialized in 'Women's Health' who immediately put me into physical therapy. Long story short, I've been in and out of the system ever since.

A few years into treatment, I had the diagnosis of PTSD added on for …

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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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Cured of Vulvodynia

Wed Aug 17, 2016 1:39 am by angelique2016

I used to post on this forum a long time ago and told everyone of how I was cured of my vulvodynia by a (Melbourne Australia) female dermatologist, she put me on very low doses of Nortriptyline (Allergron) for pain management about 10mgs I believe it was, and she also had me use Advantan Fatty Ointment (not the cream) (although I saw the cream for sale on ebay from germany) so it might help, as …

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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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