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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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I'M NEW - Do I listen to my gyno who I feel has it wrong?

Fri Mar 09, 2018 6:17 pm by Tunes25


I am a 25 year old woman and wanted to share my story here as I feel frustrated by the suggestions of my gyno and am hoping for some advice.

To give the context for this: in September 2016 I moved in with my long term boyfriend after living abroad a year and (nearly) abstaining from sex. Within a few weeks I had got a yeast infection which I treated myself successfully, but then 2 weeks …

Comments: 1

I cured myself 100% of vulvodynia twenty years ago--I hope this helps someone

Mon Mar 12, 2018 4:33 pm by totallycured


Every so often I'm reminded of the constant, persistent, horrible pain I was in two decades ago, and I reach out to try to help others who are suffering. If someone had offered me a solution during that terrible time, I'd have jumped at it. I hope this helps someone.

Yes, I did have terrible vulvodynia. It felt like someone poured acid all over my vulva. My doctor confirmed it and was …

Comments: 1

Recently Diagnosed which has motivated my research study

Tue Mar 06, 2018 4:54 pm by ebclose2free

Hi everyone,

My name is Eliza Barach and I was diagnosed with vulvodynia in October of 2017. I'm also PhD student at the State University of New York at Albany. I work several professors at SUNY, but one in particular, Dr. Mitch Earleywine researches marijuana and its possible efficacy as an alternative treatment. Our previous examined cannabis and symptoms of PMS/PMDD and found that women …

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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 …

Comments: 3

New and desperate for advice

Sat Mar 03, 2018 2:37 pm by srbry

Hi everyone,

I'm new here and was told to find a support group because this is all getting a bit much really...

I lost my virginity when I was 18 and it hurt - that was normal. Loads of women had told me that it hurt so that was fine I didn't question that. I was with the same guy for a couple of months and each time after that it was uncomfortable and not great. I didn't tell him because I …

Comments: 3

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 …

Comments: 9

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 …

Comments: 12

Can A Cut In Vestibule cause Vulvodynia?

Thu Mar 01, 2018 1:07 am by rockylife

Can a cut in the vestibule area cause vulvodynia? Is it possible that some nerve a were damaged that’s why I feel this pain in my area without visible lesions?

Comments: 0

I'M NEW - Do I listen to my gyno who I feel has it wrong?

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I'M NEW - Do I listen to my gyno who I feel has it wrong?

Post  Tunes25 on Fri Mar 09, 2018 6:17 pm


I am a 25 year old woman and wanted to share my story here as I feel frustrated by the suggestions of my gyno and am hoping for some advice.

To give the context for this: in September 2016 I moved in with my long term boyfriend after living abroad a year and (nearly) abstaining from sex. Within a few weeks I had got a yeast infection which I treated myself successfully, but then 2 weeks later got a UTI, which was followed by another yeast infection. I had a month of feeling fine, and then got another in January and from then felt I was in this horrible cycle of getting one, it being better for a week and then symptoms returning. I made every effort possible to avoid the things that trigger it too. I finally got the walk-in clinic to refer me to a specialist in April and at this time the doctor I saw suggested I also take probiotic suppositories with the oral medication for yeast and to continue taking these once a week after the yeast treatment. I was pain free and having sex for 5 weeks solid and assumed I had found the trick and so ended up cancelling the gyno specialist appointment in June because I didn’t want to waste her time.

Silly cheap me, once my probiotic ran out after 8 weeks, I thought I would try just living without taking this every week as it was a little expensive and I'd been doing so fine. Low and behold two weeks after stopping this I get another yeast infection!! I was so mad and frustrated at myself for having cancelled that specialist appointment! I ended up returning to the same walk-in clinic and getting them to refer me again, but this time my appointment wasn’t until October (this past October 2017). I treated the yeast I got in June and started up with the probiotics again, but there was a lingering pain even after the the treatment was over for the rest of the summer and attempted sex usually resulted in a burning sensation. I ended up mutually breaking up with my boyfriend in August, not over this sex stuff, but realistically it didn’t help any. In September, it had been 4 weeks since I attempted sex and I was finally starting to not have consistent vulvar pain anymore. My ex came over once and we had sex to “test me out” and I remember it actually feeling good! I was essentially pain free up until my gyno appointment in October and didn’t have much to say to her other than give my history since I was feeling fine. She told me if symptoms return she could book me in quickly in the future.

In November I decided to enter into a friends with benefits type situation with a guy friend of mine. The sex was good with him too and I was pleased to think I finally overcame this stuff. Then I started noticing a bad odour from my vagina and was getting rather self-conscious of it so I ended the friends with benefits arrangement and booked an appt. with the gyno. She did some tests which came back positive for BV and so prescribed me oral antibiotics. During that week of antibiotics I also inserted the probiotic suppositories. After that treatment was over, I felt back to normal for a month.

THEN in January I randomly and without any factor (like sex) having provoked it, started feeling a little itchy/ burning type feelings down there intermittently. I had an appointment with my gyno on Jan 16th to get a new IUD inserted and brought up these concerns with her then. She said she didn’t see anything looking wrong with my vagina and said it might be to anxiety about getting the IUD, although I didn’t feel this was the case as I wasn’t particularly nervous.

In the meantime of this going on, I starting to date a new guy. At first I put him off sex with excuses like my period, but then ended up telling him the truth and giving a brief history of my experience with infections. He was really understanding then and we made a plan to do ‘other stuff’ while we waited for this particular issue to get resolved. We did try having sex once just to see how it would be for me and it was ok at first, but quickly became painful with a burning sensation as he went deeper and there was more friction.

Anyways, a week later and I’m still getting these symptoms so I book another appointment and this time she takes me more seriously and says since we’ve ruled out the typical infections, she thinks it’s a mild case of DIV (even though I have no odd discharge whatsoever). She prescribes a clindamycin gel to be inserted into the vagina every night for 2 weeks. I had to wait a week to get the prescription filled because it was a compound and needed to go to a special place. My symptoms seemed to improve slightly in this time and I even tried having sex again which was similar basically the same as before, more burning pain with faster and deeper penetration. However, one day the following week there was noticeable itching and burning during the day so I thought the clindamycin was worth a try even thought I didn’t have ALL symptoms of DIV. I proceeded to endure 2 weeks of hell, with severe burning during peeing and wiping as the gel inevitably leaked out and significant burning/ discomfort during the day. Even though this was an antibiotic I (stupidly) didn’t go on my probiotic suppositories as I felt enough was already being shoved up my vagina. Even though my gyno said I could have sex while on this medication, that was TOTALLY out of the question. After I had been off it for a few days, I tried to have sex again and it felt ok at first with more pain as it continued and afterwards there was this severe burning sensation that lasted for 30-40 minutes, slowly fading. I was also still having intermittent itchiness/ burning during the day unprovoked.

I went to see her for the follow up and reported what happened. She looked at the inside of my vagina and said I now had a yeast infection and she couldn’t see the DIV because of all the yeast. GREAT. So she prescribed me 2 oral tablets for the yeast to take 72 hours apart. She said if I’m still getting symptoms 5-7 days after the first dose then to start on this steriod cream for the DIV, which you insert into the vagina every day for 2 weeks and then every couple days for two weeks.

WELL, where I am now is that I’ve taken the two doses for yeast and it’s been 9 days since the first dose. These past 4 days I’ve noticed significant improvement in my itchiness and discomfort during the day, with it only being there slightly every once and a while, especially yesterday. I was really hopeful that the clindymicin had done the trick and that now that the resulting yeast had been addressed I’d be good to go for sex again! However, upon having sex last night, it was just the same as before: feeling ok during but becoming a more irritated as it went on and then this severe burning for nearly an hour after.

All the times we’ve had sex my boyfriend has remarked that it feels like the muscles are tight, but not in a normal way, based on his experiences with women. This kinda sounds like the muscle spasms of vaginismus to me.

By the way, I have had years of pain-free sex so I know what this is supposed to feel like when all is well.

Obviously I have done a great deal of research into vaginal/vulvar pain problems and really feel that what I have is most likely vulvodynia or vaginismus and NOT DIV like my gyno thinks because a) I don’t have the discharge and b) I’ve read that most people see improvement after the round of clindymicin. I’m really not keen on subjecting myself (and my wallet) to this steriod cream stuff for a month, which the high potential for lots of discomfort and no improvement. I can feel this situation beginning to put stress on my relationship and I'm frustrated by the idea of wasting a month. Which I understand in the grand scheme of things isn't that long, but this guy and I really click on a lot of levels in a way I haven't experienced before and I would be pretty upset if it crumbled due to this. He's been supportive and assured me that a solution will be found, we just have to keep trying things, but he has also been honest about having a high sex drive, which my healthy vagina self would be totally into, so it's just really frustrating to feel so powerless in regards to this. I mean, we have done other stuff of course and that mitigates the issue, but we agree that nothing quite replaces sex.

What I want to know from the community here is what do you think? Are my concerns about this steriod cream valid? Has anyone been on this an can tell me how it is to be on it? Part of my wants to call my doctor before going on it and explain to her why I don’t think it will be helpful, but I don’t want to undermine her since she’s supposed to be the professional here, and I don’t even know if her secretary would even relay the concerns.

Also, does this sound like Vulvodynia to all of you who have actually be diagnosed with it?

I should also mention that I’ve really been working on the psychological aspect with myself by saying aloud to myself (and in a voice like I really believe it) the following statements 10 times on my drive to work in the morning. If anyone knows about Louise Hay’s affirmations, same idea.
1) There are solutions to any problem I experience
2) My vagina feels good
3) I deserve to have good sex*

*I had done something sexually I was a bit ashamed of in the past and at times of having these problems over the past year I would have this bad self talk like: ‘well serves me right, I don’t deserve to enjoy sex anyways’. However, through talking with a close friend and my new boyfriend I’ve come to realise that this isn’t something I should feel ashamed/guilty about and that I didn’t do anything wrong, so I’m trying to come to terms with that too. I've considered seeing a sex therapist but the only ones are kinda far away and I don't have benefits. Do you think this is worth looking into in my case?


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Re: I'M NEW - Do I listen to my gyno who I feel has it wrong?

Post  sarisbaris on Thu Mar 15, 2018 3:51 am

You are fighting a virus they can't detect. Don't feel bad. It's not psychological. It's real and you need to know how to kill it. You could have gotten this from sex but you could have also gotten it from a door handle or bathroom, it's like any other virus. I battled vulvodynia, UTI, yeast infections, VB, Lichen Sclerosus for years. I went to 20+ doctors and countless alternative ones. I know it was a virus because when I followed the protocol by Anthony William I was cured. No joke cured from all of the above.

Ok... so, he argues that vaginal burning is caused by an unknown/undetectable strain of strep or shingles, UTIs is usually strep although shingles can cause damage as well, yeast infections and VB are strep and lichen is shingles mixed with lead. I was healed from all of this. All of it.

Here's my blog. Read through it. I found that lately it's easier if I have a quick chat with each person to get them started on the right protocol since there is so much you can do.

Don't give up! My email is listed on the bottom of my blog.


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