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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, …

Comments: 6

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 …

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 …

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I have always wondered about this...

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I have always wondered about this...

Post  flashlight on Tue Apr 12, 2011 1:30 am

Hi, all.

Does sexual arousal or orgasm (from a female "wet dream" or external clitoral stimulation alone...not intercourse) cause you pain hours later or the next day? It makes those few seconds of pleasure so not worth it for me. It is just cruel, right? I can't have pain free sex...and, if I do happen to get aroused and want to go through with external stimulation to the point of orgasm, as it seems like a good idea at the time, then I suffer for it the next day or later on with increased burning. I have read on some of these posts that some people think that getting the blood flowing is good. For me, it just causes more pain. Anybody else have my experience?

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Re: I have always wondered about this...

Post  noni on Tue Apr 12, 2011 2:35 am

Hey flashlight,

I havent been brave enough to test this theory...wearing clothes hurts so I can only imagine when that other type of activity would do to me.

But still I think everyone is different and I dont think avoiding our sexual sides is healthy either.

We cant win it seems.
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Re: I have always wondered about this...

Post  Aussie on Tue Apr 12, 2011 6:27 am

I used to have this, before I knew how to use my muscles down there, before I saw a physio. I worked out that it was because for some reason my pelvic floor tensed during arousal. So when I orgasmed and tensed the muscles even more it caused pain. I have now learned to relax during stimulation ( it took a lot of work because it was automatic for me, always has been I think) and don't suffer with the burning the next day. Once you get control of the muscles you can feel when they are relaxed or not.

Hope this is helpful

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Re: I have always wondered about this...

Post  Zazu on Tue Apr 12, 2011 4:30 pm

Hi there,

I found recently (in the last 6 weeks or so) that orgasms have started to be painful, too. For me there is pain right when it happens (burning at the opening), followed by deep pain (uterine) that can go on for a few hours. I haven't noticed that it causes a flare up of more vulvar irritation later on, though. I think that the deep pain is caused by endometriosis, which my gyno suspects that I have. Is your pain deep or at the vulva, flashlight?
My physio seems to mostly do muscle relaxation and trigger point stuff down there - she hasn't taught me anything about muscle control down there. Aussie, how did you learn pelvic floor control?
Thanks!

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Re: I have always wondered about this...

Post  Aussie on Wed Apr 13, 2011 10:44 pm

biofeedback.

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Re: I have always wondered about this...

Post  Sarah001 on Thu Apr 14, 2011 1:16 pm

I've done some biofeedback too Zazu, it's worth at least having a couple of sessions. I had an incredibly tight pelvic floor (still have actually) and couldn't release the muscles at all at the start. While I was chatting to the therapist my pelvic floor was getting tighter and tighter and I could see the line on the screen going up but couldn't stop it! I really felt like the PF was relaxed and it wasn't at all.
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Re: I have always wondered about this...

Post  lisa98 on Thu Apr 14, 2011 10:54 pm

I asked my physio about bifeedback, she seemed very dismissive, said its probably not what I need. Should I press this point, do you think? I want to try everything that might help. I might just ask her more about why she thinks it would not help. Has anyone else been told something similar?

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Re: I have always wondered about this...

Post  Sarah001 on Fri Apr 15, 2011 12:52 pm

Biofeedback is useful is you aren't controlling your pelvic floor properly, it shows you how much it's tensed on a day to day basis and what it does when you do certain things. If you think you may have a tight pelvic floor that you need to be more in touch with then it's worth a go. You can also get your resting tone from biofeedback and learn how much the tone is spiking up and down when it's supposed to be resting (PF instability which Dr Glazer is convinced it's critical to fix) I don't know why your physio is being so dismissive as they use it for all manner of physio related problems in different ways, is it that your physio can't provide you with biofeedback and doesn't want to lose a client to someone who can? If you want to try it then push, it's up to you at the end of the day.
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Re: I have always wondered about this...

Post  lisa98 on Mon Apr 18, 2011 9:43 am

Thanks, Sarah. I don't think it was fear of losing a paitient- she mentioned she had done it before and I think they have the equipment at the centre she is at. I think she just developed a whole plan for me and biofeedback wasnt part of it. I have been steadily improving doing her exercises and seeing her regularly, so I think ill just put myself in her hands for a while. Partly because I trust in her informed opinion, but probably mostly just because Im so tired of thinking about this stupid thing and just want someone else to make decisions and look after me.

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the pain

Post  flashlight on Fri May 13, 2011 2:46 am

for me, the pain is burning. If I don't have any penetration, just external stimulation, I just get worse burning. So, that doesn't make sense, because there is no involvement of the muscles except for what contracts during orgasm, if it occurs...But, i get worse pain even if I just have unrelieved arousal. If I do actually have sex, the burning fire at the introitus is hideous. I have no internal pain. Just can't get past the threshold without causing agony. The outside is fine, the inside is fine, but the "mucosal" surface inside the labia minora is just red, red, red and on fire.

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Been there

Post  saskatownv on Fri May 13, 2011 2:58 am

Yup....even arousal w/out sex hurts.

Sally

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Re: I have always wondered about this...

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