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I'm new to this forum and would love some advice! :)

Tue Jun 05, 2018 4:13 am by anikita

Hi lovely gals!

I'm honestly hoping to get any bit of advice anyone might have to offer. I go from bouts of sobbing hysterically in my boyfriend's arms to feeling confident that I can beat this.

I haven't been actually diagnosed with vulvodynia but EVERYTHING under the sun has come back negative. I started having sex 4 years ago after starting Lo Loestrin, with my first and current boyfriend …

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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

Hello!

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 …

Comments: 8

Gabapentin Gel. or other topical creams

Thu May 10, 2018 9:43 am by Rosie21

Hi I have been suffering for some years with this abominable pain. I have tried most of the systemic drugs , I asked specialists and Doctors if I could at least try a topical treatment but because this requires a special prescription have been refused Has anybody had a chance of trying these? Thank you I will try to put a link on to some of the research into Gabapentin Gel. Thanks.

Comments: 1

What has been helping ME (much less pain over time!!)

Wed May 16, 2018 3:43 am by leoscc

Hello everyone! I vanished for quite some time as my life became consumed by not only this but other daily responsibilities as well. Shortly after my diagnosis, my boyfriend f 3 years left me as he did not want to deal with this. It left me broken for a while but also gave me time to figure out what the heck was going on. So, I will write out a quick list of my symptoms and what helped me.

1. I …

Comments: 0

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

Mon Mar 12, 2018 4:33 pm by totallycured

Hi,

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 …

Comments: 4

Condoms Less Painful?

Mon May 07, 2018 3:35 am by stillinpain

I'm just curious, has anyone found using condoms to be less abrasive to the skin than without? I just got off birth control and haven't stretched myself out enough post surgery to try sex yet, but when I do I am wondering how trying it with condoms with affect the sensation. I feel like for me the skin to skin sensation creates pain, not just at my entrance but internally, too, since I also have …

Comments: 0

Will there be an end?

Fri Apr 27, 2018 12:06 am by Krista2828

I go in and out of being okay and not being okay with this condition. I question often why me? I am a problem solver by nature and I feel so defeated that after tons of research and trial and error and doctors and tears that there still is no answer.

I am in my 20's.. it shouldn't be this way.

Id love to know what all has worked! I am willing to try anything to get my life back. I am curious …

Comments: 6

you can be healed so easy and quite fast.

Thu Apr 26, 2018 11:46 pm by pussycat

Hello everyone,
i am new to this forum. I wanted to share my personal "journey" with V with you and to give you a real hope you can be totally healed/recovered from V. Many years ago i was struck with V, it was painful and got worst and worst, eventually i could not sit, could not stand, could not walk, could not swim in a swimming pool anymore. I was becoming bedridden, it frightened …

Comments: 4

Hi Im from Australia :)

Sat Jan 08, 2011 1:08 am by emma

Hi girls... I live in Australia.
I am currently undergoing a new treatment for vulvodynia. Just wondering if anyone else here has tried it. It's Endep in the form of cream to apply directly on the area. I dont know if anyone else has tried this but so far evidently it has had a 50% success rate.
Anyway i feel at a loss. This new treatment is exciting but at the same time i just dont feel like …

Comments: 35


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)"
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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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