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» I think I've developed vulvodynia?? Please help!
Yesterday at 9:10 pm by Necromeowncer

» MY STORY & Vestibulectomy 2/8/17
Yesterday at 12:38 pm by Mel T

» New w/ Secondary Provoked Vestibuldynia
Sun Oct 22, 2017 3:47 am by Birdy

» Newly diagnosed
Sat Oct 21, 2017 9:50 pm by sarisbaris

» Prednisone Injections?
Wed Oct 18, 2017 5:07 am by sarisbaris

» Has anyone had continued success with gabapentin or Botox injections?
Wed Oct 18, 2017 4:47 am by sarisbaris

» Recent "Poke" Pain - So Confused/Losing My Mind
Wed Oct 18, 2017 2:37 am by sarisbaris

» What is Vulvodynia?
Tue Oct 17, 2017 11:57 pm by Jenjen

» CURED FROM VULVODYNIA - PAIN FREE FOR 2 YEARS
Mon Oct 16, 2017 2:22 am by Sagewoman

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: 4

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: 9

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 …

Comments: 0

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


Gabapentin

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Gabapentin

Post  ria on Mon May 23, 2011 4:34 pm


Hello Ladies,

My Consultant faxed a letter to my GP for me to be prescribed Gabapentin.I have been to the Doctors today to pick up a prescription. I was taking Nortriptyline but had a reaction tried Venlafaxine but did not tolerate it at all. The Lady Doctor seemed reluctant for me to go on the Gabapentin and suggested I try Nortriptyline again as she was concerned with the side affects of the Gabapentin, she suggested taking clarityn with the Nortriptyline.

When on the Nortriptyline 75mg it did help but never went away. I have been looking on the web at some clinical trials
using Gabapentin, see below. I have both prescriptions, any feedback?

Many Thanks. Ria

RESULTS:

A total of 152 patients were included in the study. Ninety-eight (64%) patients treated with gabapentin had resolution of at least 80% of their symptoms during the study period. Forty-nine (32%) did not have adequate resolution. There was a high percentage of comorbidities in patients with generalized vulvodynia. Sleep disturbance was the only comorbidity that negatively affected the efficacy of gabapentin. In addition, there appeared to be a trend toward a less favorable response in patients with a longer period of untreated illness (p value not less than 0.05). Side effects of gabapentin were few. Forty (26%) reported some side effects. Fatigue was the most common complaint. Seventeen patients (11%) discontinued the medication secondary to side effects.
CONCLUSION:

Gabapentin appears to be very effective in the treatment of generalized vulvodynia, unprovoked. It has a very low side effect profile. Certain patients may be less likely to benefit from gabapentin, including those with the comorbidity of sleep disturbance. Patients with symptoms of longer-standing generalized vulvodynia, unprovoked, may also be less likely to benefit from this treatment.

ria

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Re: Gabapentin

Post  noni on Mon May 23, 2011 10:05 pm

Hey Ria,

Thanks for this post.

Over here its called Neurontin...and I have read its pretty effective with V. I wish you the best!

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Re: Gabapentin

Post  Sarah001 on Tue May 24, 2011 9:58 am

I'm on Pregabalin which is also an anti-convulsant (but alot more expensive than Gaba) and it helps. You can only really figure out if they will help you by trying them. Good luck.
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Re: Gabapentin

Post  Aussie on Wed May 25, 2011 2:34 am

I too am on gaba, well I was. I stopped after 10 weeks because it hadn't made a difference, no side effects other than dry mouth and felt a bit groggy for the first 2 weeks. I seem to tolorate meds well though.

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GABAPENTIN

Post  ria on Wed May 25, 2011 12:10 pm

Hi All,

Sitting here at the computer with my Gabapentin just picked it up from the pharmacy, drugs they scare me. I have taken nothing for 10days but I know I may need them if the V kicks in. I was told to take all medication for 6 months to allow the nerves to heal, but the nortriptyline gave me a reaction so I stopped taking it.

I can feel mild discomfort but its ok, does anyone have no pain on meds, forums always say they still have a level of background vulva pain. My Vulva Specialists said take them everyday even if you think its gone away. Anyone put weight on with Gabapentin, some forums say they have piled it on..................... Sad Sad Sad Sad Sad

Well Gapapentin in one hand and a bottle of red wine.................I have not had a drink for ages tonite I am having some wine and I will think about the Medication tomorrow. I just want my life back No alcohol when on Medication. Please anyone on medication totally free of any discomfort/pain?


Thank you girls its good to talk cheers Laughing Laughing Laughing Ria

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Re: Gabapentin

Post  Sarah001 on Wed May 25, 2011 6:46 pm

What I find with meds is they work well on burning pain but not on soreness/rawness type pain. The combination of Ami and Lyrica has almost got rid of all my burning but had little effect on the rawness I feel in the vestibule which is a real pity because if they worked on both types of pain I'd be feeling pretty good now. I've gained half a stone but can honestly say it's because the tablets cause an increased appetite, initially I thought I was eating the same as always but gaining weight so I started to keep tabs on every morsel that went in my mouth and soon realised I was actually eating quite a bit more so I'm now keeping an eye on that but do find I'm hungry alot of the time. They can also cause water retention which no doubt adds to the weight gain. So I can't tell you I'm painfree on meds no but they do help some and even though I know I shouldn't I do drink alcohol while taking the above and don't find it any different to before I was on meds!
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Re: Gabapentin

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