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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 …

Comments: 7

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 …

Comments: 2

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 …

Comments: 10

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 …

Comments: 1

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: 6

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: 1

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). …

Comments: 0

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


New and confused :( opinions needed please

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New and confused :( opinions needed please

Post  quixotic on Fri Jul 11, 2014 5:52 pm

Hello, i'm very confused and upset and looking for some opinions on what could be going on with me, I will try to keep it brief...

Problem started January after two courses of antibiotics - suspected Thrush, no swab taken at time due to how swollen/painful area was, felt and looked very red/inflammed and aggravated inside, alot of discharge, thick white/yellow coloured, multipe doses of Fluconazole.

After the treatments of Fluconazole the extent of the interal swelling/aggravated feeling had subsided but it did feel like there was still swelling around the opening, there was still a lot of discharge and a very uncomfortable feeling externally, very sore at times, started burning when urinating and discharge was ranging from a thick yellow to a watery grey/white colour. In addition to this there has been pelvic pain, burning and sharp pains around ovary area and abdominal pain.

As of July 2014, the external pain/burning/extreme discomfort feels like it starts at the vulva and goes all the way back to the anus, looks red and inflammed and at the start and end of the monthly cycle it feels like it flares up even worse, this has been happening monthly for the last seven months, still burning/stinging when uriniting and even after bladder is empty the stinging/burning feeling lasts a minute or two afterwards. Vulva feels very aggravated and uncomfortable, doesn't feel like a mild irritation, feels very deep within, the worst feeling parts seem to be the clitoris going down to the perineum and at times the perineum feels hard and sore. Aqueous cream that was suggested has had no effect on any relief, have also tried Timodine and Clotrimazole amongst many other creams and none of these have any effect. I also feel like the discomfort is in my lower back and when this all started I had very sore lower back pain with no reason as to where it came from. I do not wear restrictive tight clothing and I wear cotton underwear. I use dermol to wash the area and even though it was suggested that it could be my washing powder that is causing it, I do not believe this is the case as having changed my washing powder to non biological and using a hypoallergenic softer (do not use the softer on underwear) I still have no relief and I do not see how washing powder can cause internal pain, I also do not have any skin irritation elsewhere. This problem is causing me sleepless nights, the feeling down there does not feel like a mild aggravation due to an allergy of sorts, feeling very stressed out and upset that seven months later I have no answers as to why this is happening and do not feel like it is being taken seriously how badly this feels, it is not something I can live with, I feel constantly upset on a daily basis by it, it is so uncomfortable and distressing that leading any sort of normality is very difficult Sad

I was sent to a gynecologist who didn't bother to do anything other than yet another swab test which came back negative for stds and the type of infections they test for, i'm now being referred elsewhere and hoping that someone will take the time to look into what is going on. I have asked the non interested doctor if I have possibly caused myself some sort of infection by shaving and cutting myself accidently down there but that was just ignored.

Basically what i'm wondering is does the above sound like vulvodynia? does vulvodynia cause the same feeling in and around the anus or is it mostly restricted to just the vagina? I honestly feel like i'm on the verge of a breakdown, I feel constantly upset and on the brink of tears Sad

Any opinions would be really appreciated, I feel like i'm completely alone with this to the point that the doctors don't even realise how bad it feels.

quixotic

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Re: New and confused :( opinions needed please

Post  Caropes on Fri Jul 11, 2014 6:52 pm

So sorry for your pain! I have many of your same symptoms. My pain started after back to back treatment for a bacterial infection. My pain is on the outside, all around the vulva. The pain is nerve-like and constant. The pain feels deep and does seem like it goes straight back to the perineum and up to the clitoris. I also have very low back pain. After seeing multiple doctors, one doctor diagnosed me with Vulvar Vestibulitis. (This was only after I brought to him the info I had found on the internet!!). He prescribed me Neurontin (Gabapentin). I have worked up to 600mg x 3 day. It has not really helped much at all. My pain level is still around 7. The meds did help a bit with my depression though. I have been and still am where you are. I feel your pain and depression. Who knew something like this even existed? I have an appt with a new gynocologist next week for a second opinion and hopes of getting some different meds. I have read many women benefit from Lyrica and Amitriptyline.

Can you see a different Gyno, urologist, specialist? Where do you live? Our symptoms do sound mostly similar. Feel free to IM me or my personal email is caropes32@hotmail.com Just try to hang in there. I have found some relief with this forum and all the caring women. Just one day at a time is all you can do for now.

Caropes

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Re: New and confused :( opinions needed please

Post  quixotic on Fri Jul 11, 2014 7:40 pm

Hello, I really appreciate you responding. When you say pain what do you mean exactly? I don't feel it as pain as such, do you mean pain as if you accidently cut yourself or stubbed your toe? I have had a hard time describing what it feels like, the only way I can describe it is like a deep aggravated bothersome chronic feeling, like an irritation but not itchy, it's never been something I want to itch. Last week was my first Gyno appointment, i've never had blood tested (not sure if that's something they do) i've never had an internal exam, the Gyno basically just done another swab and looked externally and said it looked mildly irritated but on the day I went it didn't even feel bad, it wasn't until the weekend that it's got insanely bad feeling which made me think it was due to shaving and accidently cutting myself as it usually only flares up this bad before and after my period. I just feel like i'm going round in circles with doctors who aren't interested and want to use any excuse as the problem Sad today I was given Nystatin cream but i'm sure that's for thrush so I don't know why the GP (not my usual doctor) bothered, the other thing i've been given in the past is  Instillagel which is generally used when inserting catheters in people or before internal invasive procedures so does that not say something about the lack of understanding or interest from the doctors I have seen? I have been referred onto some sexual health clinic now, apparently with gynos but apparently it's a walk in place mostly but they take appointments, somewhere that people mostly go to for STDS so i'm not sure how helpful they are going to be Sad I also live in Scotland, where are you from? also i'm really baffled about how they diagnose such a thing when professionals don't seem to know what it is or how to cure it?

quixotic

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Re: New and confused :( opinions needed please

Post  quixotic on Fri Jul 11, 2014 8:03 pm

Does anyone have the feeling they get in the vagina going all the way round to the anus? even above? I even feel it in my lower back, it's really uncomfortable, it almost feels like it's inside and like some sort of irritated pressure.

quixotic

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Re: New and confused :( opinions needed please

Post  Caropes on Fri Jul 11, 2014 8:20 pm

Got your email and sent you one back.

Caropes

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Re: New and confused :( opinions needed please

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