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Anyone have pain with urination?

Tue Oct 16, 2018 2:35 pm by mertzwl

Hi everyone - I can't believe I've been dealing with this for almost 10 years and an appointment scheduler at a urogyn office is the one to suggest I look into vulvodynia. Honestly, I don't care, I just thankful I might have an answer.

I have pain in one specific spot right around the urethral opening so it always coincides with urinating (it's not a uti). Does anyone else deal with pain …

Comments: 6

Diagnosed recently, looking for advice

Sun Sep 02, 2018 12:51 am by Cloudberry

Hi everyone,

I'm so glad I found this forum! I was diagnosed with vulvodynia/vulvar vestibulitis (still not sure about the difference between all the different terms) a couple of months ago and I could do with some advice. This is probably going to be a lot of text because I just want to get everything off my chest, so please bear with me.

I’m a woman in my late 20s. Before getting diagnosed …

Comments: 4

From a concerned husband

Thu Jul 12, 2018 10:45 pm by ConcernedYorkieHubby

Hello everyone,

This is probably a little unconventional, but I’m a man who is here because his wife has been diagnosed with vulvodynia. The poor girl has been suffering with vulva pain for around 10 years now, and I’ve been by her side through the pain and tears and doctors misunderstandings the whole way, and we’re both exhausted and terrified by the whole experience.

I’m sure a lot …

Comments: 4

Had this for 5 years, looking for people who understand

Sat Oct 06, 2018 9:46 pm by blackberrie

Hey all. I'm really struggling to find anyone in real life who can really understand what I'm going through. I've had vestibulodynia for 5 years now and I'm single. Obviously it has completely affected how I approach dating and sex and the fact that I can't really talk to people irl about it has made me feel very lonely. I've found that a lot of the women who have this problem are married and …

Comments: 2

6 year sufferer but I’ve found some hope

Wed Oct 10, 2018 1:33 am by Npage14

Hey, ladies! I’m new to this support group, I’ve thought about doing something like this for a while so I wanted to try this out! I’ve had vulvodynia for 6 years now, I am self diagnosed. I’m 20 now and the pain started when I had my first encounter with sexual contact when I was 14(I still remained a virgin though it was fingering). For a couple years the pain was so bad I could hardly …

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Hurting, Burning, Itching, and Worn Out

Thu Aug 09, 2018 10:55 pm by donnambr

This vulvodynia that I'm currently suffering with is so cruel. I hurt, I burn, I itch. When I first got this several years ago, before the internet, I though I was the only one with this awful disorder. Doctors couldn't figure it out. I felt so alone and devastated. Somehow it disappeared for a few years and now I'm suffering again. This dreaded V misery is back and I feel like I will be with …

Comments: 5

Hi girls! New in this forum

Fri Jul 13, 2018 2:31 pm by Gaby

Hi everyone!

Also joining the V club, Here my story:

It all started last year in september with a very bad throat infection for which i had to take antibiotics for about a month. This cause several yeast infections (candidia albicans).... one after the other!. I had them every month from october 2017 till march 2018. During this period i use an incredible amount of anti-fungal creams and …

Comments: 1

Newbie and feeling helpless

Wed Jul 11, 2018 1:52 pm by Taylor1

Hi, I found out a few weeks ago that I have this condition, started off at the end of April as a uti took strong antibiotics then got a thrush infection and now this.. My doctor has tried me on amitriptyline and gabipentin and both made me so poorly I couldn't take it plus I have seen what long use of these drugs has done to my mom for pain and its not good. I am using coconut oil which does …

Comments: 3

I'm new to this forum and would love some advice! :)

Tue Jun 05, 2018 4:13 am by anikita

Hi lovely gals!

I'm honestly hoping to get any bit of advice anyone might have to offer. I go from bouts of sobbing hysterically in my boyfriend's arms to feeling confident that I can beat this.

I haven't been actually diagnosed with vulvodynia but EVERYTHING under the sun has come back negative. I started having sex 4 years ago after starting Lo Loestrin, with my first and current boyfriend …

Comments: 6

Brand of biofeedback device

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Brand of biofeedback device

Post  karris87 on Tue Jan 17, 2012 10:26 am

Does anyone have a brand of a biofeedback device that they like?


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Re: Brand of biofeedback device

Post  Sarah001 on Thu Jan 19, 2012 12:22 pm

I'm not sure anyone has one, Sebby had one she was using with Dr Glazer but I'm not sure what type it was. I was looking at a Neurotrac one a while ago but when I emailed the company to ask if it could be used for tight pelvic floors they didn't know so I haven't bought one.

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handheld devices

Post  toosore on Fri Jan 11, 2013 8:04 pm

I have been looking into this, too. Dr. Glazer's studies on using biofeedback for V involved at-home practice for 20 minutes 2 times a day for up to six months - That's a lot practice! We certainly can't afford the time or money to go to the physio that much! I think it really sucks that our medical coverage and treatment doesn't include a unit to use at home...

Anyhow, the laptop and computer software that my physio uses is thousands of dollars, so not feasible for the average person. For home use, there are handheld units that have a bunch of lights that light up to show you what's going on. They are generally designed for pelvic floor rehab for people who are incontinent. The cheaper devices only measure muscle tone. For more money, you can get a device that also stimulates the muscles. My physio said that the stimulating feature was something that I could use way down the road at the end of treatment. Here are some prices: the cheaper unit was $280, the one that also had the stimulating capability was $500, the one that Dr. Glazer sells (which does not stimulate) is $350. I have read that biofeedback units are medical devices and usually only sold through medical practitioners. In addition to the unit, you also have to buy a probe. Before you choose a unit, find out what the probe looks like and how big it is. The probe for Dr. Glazer's unit looks downright evil - it has a huge bulbous end on it that makes me cringe just looking at it! The one he sells is made for incontinent ladies, who are usually very slack and don't have pain. My physio had a whole catalog of medical equipment, and there were several units in it. Your physio should have the same.

Right now, I can't tolerate inserting anything without increasing my pain. In her clinic, the physio uses a system that handles three sizes of probes - an anal probe (pinky width - less than 1/2 inch), and two sizes of vag probe, both of which look big to me! I will first have to train with her in the office before buying anything. I have had three sessions so far (no biofeedback), and it will be at least four more before I will be ready to carry on at home. I have a particularly severe case of V now, after slowly getting worse for the past 30 years. Anyone who still has "only" provoked pain, I would encourage you to seek treatment and be diligent in following biofeedback exercises. I wish I had done this 10 years ago when I only had pain with intercourse. No one warned me that I could get this bad - on disability, unable to sit at all, constant pain, etc.... This is not how I pictured my life!


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Re: Brand of biofeedback device

Post  Rose86 on Thu Oct 24, 2013 10:14 pm

I have the NeutroTrac Simplex and have started using it at home every day. It seems fine for what I need it for. Let me know how you get on!


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Re: Brand of biofeedback device

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