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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: 7

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 …

Comments: 5

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 …

Comments: 4

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


Is this even vulvodynia !!!!

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Is this even vulvodynia !!!!

Post  Ouch123 on Wed Dec 09, 2015 11:57 pm

Hi all,
I would like to explain my symptoms and see if it fits.

I am burning from the top of my labia all the way past my anus, to my sacral region. The pain is sometimes a pinch in a specific labial area, but mostly its just all over. There is sharp pain in my "crack" between my anus and sacrael area, as well as labia and vaginal opening. I was diagnosed with herpes last month. I have never had an outbreak, they just found it on a blood test. I was told that although my herpes wasn't active, I had been exposed at some point. I suspect that maybe this is a herpes thing instead of a true vulvodynia thing. I don't know how long I had the hsv2 virus, maybe a long time. I don't know, my doc just sort of shrugged and said "they are both nerve problems".
Text book vulvodyna seems to be a little more localized than I am describing. I'm particularly interest to know if those of you with vulvodynia suffer sacral pain. Any insight.

Unfortunately, I cant take antivirals like Valtrex. I am in an unbelievable amount of pain. I don't really know what to do and I am extremely frustrated by the lack of urgency on the part of my doctors. I'm taking gabapentin, but I cant take it during the day. It helps me to get a little relief at night so I can sleep.
this seems like a weird place to say this, but, I really don't see a way to keep living. I see that people suffer with this condition for years. I am 50, no kids, no husband. I really just don't see the point. I am not depressed or impulsive. I actually work in the mental health field and feel like I have a pretty good handle on my own neurosis and mental health issues. I feel pretty sad about it really, I don't really want to die, but I don't see any way to stay living. I'm between an 8-10 on the pain scale all day every day (in tears from pain at times), and I have absolutely no chance of ever developing a meaningful intimate relationship.
Don't worry, I'm not on the ledge, its a decision I will make after I have exhausted treatment options, but at this point, I haven't been presented with any treatment options other than gabapentin. Sorry for the morbid disclosure....

Ouch123

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Re: Is this even vulvodynia !!!!

Post  PainBlogger on Thu Dec 10, 2015 9:07 am

It may be worth you getting a physio/PT who specialises in pelvic pain to assess you. I don't know where you are in the world so whether you'd need a doctor's referral. But various nerve issues or lower spinal issues could cause pain in the sacral region and around the coccyx. Pudendal neuralgia can cause vulval pain. There are other treatments other than drugs, especially if the herpes virus is not the actual cause of your symptoms.

I do get some sacral pain, but I have fibromyalgia so I get pain pretty much everywhere. There are a couple of books you may find useful reading: Amy Stein's 'Heal Pelvic Pain' and Isa Herrera's 'Ending Female Pain'.

I know at the moment you feel you've no chance of ever developing a meaningful intimate relationship, but, with all due respect, that's not an outcome that is set in stone. Try to take one day at a time. I hope your symptoms improve soon.

PainBlogger

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Re: Is this even vulvodynia !!!!

Post  Ouch123 on Thu Dec 10, 2015 4:24 pm

I just came from my new doc. She said my v was indeed atypical as i am not sensitive to touch. Its more a nreve thing. I dont really know if thats good or bad, but thats what it is. My guess is that its post herpetic neuralgia, which tends to resolve after a few months. I feel like i can cope a bit better if i know there is a possibility of relief eventually.
Thanks for your response

Ouch123

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Re: Is this even vulvodynia !!!!

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