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I'M NEW - Do I listen to my gyno who I feel has it wrong?

Fri Mar 09, 2018 6:17 pm by Tunes25


I am a 25 year old woman and wanted to share my story here as I feel frustrated by the suggestions of my gyno and am hoping for some advice.

To give the context for this: in September 2016 I moved in with my long term boyfriend after living abroad a year and (nearly) abstaining from sex. Within a few weeks I had got a yeast infection which I treated myself successfully, but then 2 weeks …

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I cured myself 100% of vulvodynia twenty years ago--I hope this helps someone

Mon Mar 12, 2018 4:33 pm by totallycured


Every so often I'm reminded of the constant, persistent, horrible pain I was in two decades ago, and I reach out to try to help others who are suffering. If someone had offered me a solution during that terrible time, I'd have jumped at it. I hope this helps someone.

Yes, I did have terrible vulvodynia. It felt like someone poured acid all over my vulva. My doctor confirmed it and was …

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Recently Diagnosed which has motivated my research study

Tue Mar 06, 2018 4:54 pm by ebclose2free

Hi everyone,

My name is Eliza Barach and I was diagnosed with vulvodynia in October of 2017. I'm also PhD student at the State University of New York at Albany. I work several professors at SUNY, but one in particular, Dr. Mitch Earleywine researches marijuana and its possible efficacy as an alternative treatment. Our previous examined cannabis and symptoms of PMS/PMDD and found that women …

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Thu Feb 15, 2018 10:04 pm by infinitelywondering

Dear all,

Today has been the day I've been waiting for. The day something FINALLY makes sense.
I've been told countless times that I've got nerve damage or a muscular condition, yet none of the specific treatments have helped me. My GP suggested attacking this from a different angle so referred me to a dermatologist specialist

after having a vestibulectomy with no success, I decided to visit …

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New and desperate for advice

Sat Mar 03, 2018 2:37 pm by srbry

Hi everyone,

I'm new here and was told to find a support group because this is all getting a bit much really...

I lost my virginity when I was 18 and it hurt - that was normal. Loads of women had told me that it hurt so that was fine I didn't question that. I was with the same guy for a couple of months and each time after that it was uncomfortable and not great. I didn't tell him because I …

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New and need some help

Wed Feb 21, 2018 4:30 pm by LindafromNJ

New to this site ad trying to figure out how it works.  I am trying to post as a new member so I am hoping this goes thru.  I am a senior adult and have just been diagnosed by the Drexil Vaginitis Center to have vulvodynia along with Vestibulitis (not sure if spelled correctly).  My symptoms are vaginal burning, itching, soreness around the vaginal opening with one spot in particular.  Some …

Comments: 9

Amitriptyline given for vulvodyina pain

Tue Oct 24, 2017 2:46 pm by katycrawford

Hi there,

After years of being misdiagnosed etc as most women have on this forum I have finally been diagnosed with vulvodynia (yay) and have been given the lowest dose of an antidepressant called Amitriptyline. Has anyone been on this before and has any positive (or negative) news to give me? Im feeling down already and I've only been taking it for a few days, I don't have much hope of it …

Comments: 12

Can A Cut In Vestibule cause Vulvodynia?

Thu Mar 01, 2018 1:07 am by rockylife

Can a cut in the vestibule area cause vulvodynia? Is it possible that some nerve a were damaged that’s why I feel this pain in my area without visible lesions?

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Anyone from New Jersey

Thu Feb 22, 2018 10:47 pm by LindafromNJ

Looking to maybe talk to someone from NJ to see if there are any support groups in this state.

Comments: 3

Some interesting information about nerve pain in general

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Some interesting information about nerve pain in general

Post  mary jane on Wed Jan 03, 2018 3:29 pm

I saw this on the TMS forum where most people have nerve pain, I thought this might apply to vulvodynia as well, since it's a type of peripheral nerve pain.

" I had a conversation with an ER doctor and an ER nurse about this very topic at one of the top hospitals in Chicago recently; I've also explored this concept in depth with my wonderful doctors at Mayo Clinic, Chicago Peripheral Nerve Center, University of Chicago, etc. It's all about recognizing that constant pain signals can indeed be quieted by embracing the neuroplasticity of your brain, as well as heightening your consciousness as an individual and fully integrating your physical, mental, and emotional health care in a positive way. It may take time, but please don't lose hope. It is possible to heal, and don't let anybody tell you otherwise! Central censitization is just the brain getting stuck in a loop after experiencing traumatic or substantial circumstances (physically, mentally, and/or emotionally) - the loop can be broken.

As an example of neural retraining, my internist and neurologist at Mayo Clinic gave me some advice when I was recently diagnosed with hypermobile Ehlers-Danlos (which is closely tied to autonomic dysfunction and overactive mast cells - both of which I had been suffering from so badly, I was actively planning to commit suicide). According to them, I had to learn how to retrain my brain and how it processes continuous pain signals from my hyperactive nerves. Chicago Peripheral Nerve Center assigned biofeedback and meditation to me as well. And guess what... IT ALL WORKED! My Mayo internist specifically warned me to not log onto online message boards and read horror stories from other patients with negative attitudes all day, as they said that would absolutely seal my fate as a hopelessly sick patient with no future. They asserted that my condition lies on a spectrum and some people do have worse situations than me, but they also said that many people could better themselves and their situations if they truly wanted and knew how to (for what it's worth, better doesn't have to mean perfect). I went from having pain that averaged from being an 8 to 10 out of 10, to pain that is now a 1 to 2 out of 10 at the most (with 1 being almost no pain and 10 being extremely unbearable pain). Despite having structural issues, I was still able to calm my autonomic nervous system and mast cells down, and anxiety, depression, and stress were indeed the driving forces behind the issues. Similarly, central sensitization also requires some retraining of the brain; I've discussed this with Northwestern University, Chicago Peripheral Nerve Center, etc. as a patient. I was fascinated with the idea of central sensitization, so I had to inquire!

It must be noted that central sensitization has been said to not have a high rate of recovery, but that's only because a lot of medical professionals and patients aren't aware of the neuroplasticity of the brain. The medical world instead tries to "help" patients by simply prescribing them medications like Cymbalta and Lyrica, and then telling them to go home and hope the medications will scramble some of the stronger pain signals. These medications may work for some individuals, but they aren't actually addressing the root of the central sensitization problem - the pain loop still continues in the background. Additionally, similar to how Jeff Goldblum's character famously says "life finds a way" in Jurassic park, pain signals within the body eventually find a way to make it back to the brain (they want to be heard!), so the medication's effectiveness often reduces over time. This is why patients frequently say a medication stopped working and need multiple dosage increases. The good news? As members of this forum who deeply understand and believe in the mind-body connection (and it's critical to our own success that we do truly understand and believe), we do recognize that neuroplasticity is real, so we can beat the "pain brain."

At the end of the day, a lot of these "separate" conditions really aren't so separate from TMS - it all boils down to the mind-body connection and ending that pain loop/cycle.

Some good reading material: http://www.theaustralian.com.au/news/health-science/training-the-brain-to-beat-pain/news-story/45ad7b7daaaf3c4bbbab6c76b0190ac7 (Nocookies)"
mary jane

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Re: Some interesting information about nerve pain in general

Post  Athena on Wed Feb 14, 2018 3:58 am

Thank you Mary Jane, it was an interesting read Smile


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