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» 7 months since the diagnosis
Some interesting information about nerve pain in general EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
Some interesting information about nerve pain in general EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
Some interesting information about nerve pain in general EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
Some interesting information about nerve pain in general EmptySat Jun 15, 2019 5:07 pm by mary jane

» 6 days post Vestibulectomy - Is this normal?? please tell me about your postop healing process!
Some interesting information about nerve pain in general EmptyTue Jun 11, 2019 12:56 am by VVSSufferer

» Vestibulectomy next week in London!! - questions!!
Some interesting information about nerve pain in general EmptyWed Apr 24, 2019 8:32 pm by HedvigB

» Dating with Vulvodynia and Vaginismus advice
Some interesting information about nerve pain in general EmptyFri Apr 19, 2019 10:25 pm by Tartufo

» Research Participants Needed!
Some interesting information about nerve pain in general EmptyThu Apr 11, 2019 2:09 pm by PelvicPainProject

» Does anyone else have Endometriosis?
Some interesting information about nerve pain in general EmptyMon Apr 08, 2019 7:54 am by Jo44

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: 2

Putnams 'bony parts' cushion or Putnams 'Dr Huff' cushion - which is best?

Sat Aug 01, 2015 4:17 pm by Fielder

Hi everyone,

I'm a newbie.  I live in the UK.  

I'm trying to work out the best cushion to get for my vulvodynia.  I suspect that I could have pudendal nerve involvement (the aching and burning pain is from vagina to clitoris) and I have rectocele and some tailbone pain too.

I have seen some good reports on older threads regarding the Putnams pressure relief cushions....with some ladies …

Comments: 11

An absolute success story- please read!

Fri Mar 08, 2019 10:57 pm by Persevere1990

Dear All,

I posted on here back in March 2017 having just got a diagnosis of vulvodynia after a few months of relentless and acute pain. I was desperate, I was hurting, I was scared I would never know life without pain there again.

I tried creams, acupuncture, numbing gels, frozen pads, baths with various internet recommended concoctions- convinced myself I had lichen sclerosus, herpes, thrush- …

Comments: 0

I'm sorry im rambling

Thu Feb 21, 2019 5:49 am by Jet227

hey, im 19, ive been struggling with this almost a year. The first week I became itchy I went in to check about a yeast infection another week later. I have been to 10 different doctors a total of about 15 appointments for this problem for the past 11 months. I have been tested for everything including having a biopsy. I was first told basically to just go home and use hydrocortazone, then I went …

Comments: 1

New member need advice please

Thu Feb 28, 2019 11:33 pm by PANDORA123

Hello, I have just been diagnosed with unprovoked vulvodynia. Im really scared and worried. It burns a lot and it hurts to sit down. I have been prescribed amitriptyle 10mg. Can anyone give me some hope that I can get better from this condition. Feeling low and depressed.

Thanks

Comments: 5

MonaLisa Touch

Fri Feb 08, 2019 7:35 pm by rl2091

Hi All,

I'm wondering if anyone has any experience with the MonaLisa Touch treatment for Vulvodynia? My pain started when I went on HRT(pill) for anxiety mainly and my pain abruntly stopped when I stopped HRT. However, when I started on the HRT patch (at my dr's suggestion), the pain returned and has never left. That was 7 years ago. I found MonaLisa Touch on the internet purely by accident …

Comments: 3

Diagnosed Recently

Tue Jan 08, 2019 3:55 pm by flissyg

Hi All,

I’m so glad I’ve found a place where there are others who understand how I feel!

So this is my story:-

I’m 36,  and 4 months ago, whilst innocently sitting in bed reading I experienced a very sharp stabbing pain in my clitoris. It last only a few minutes and then subsided as quickly as it came on. It put it down to “one of those things”.  The following morning I woke up …

Comments: 4

New and need advice and help

Wed Dec 05, 2018 3:26 pm by Cin124

Hi everyone,

About three months ago, I started having vaginal and vulval itching. Then, about two months ago, my vulva started to feel painful and look swollen, so I went to the doctor. I was tested for herpes, chlamydia, and gonorrhea which all came back negative. I also had to do a vaginal swab test and the only thing that came back positive was yeast infection. I was prescribed hydrozole …

Comments: 6

New here would very much appreciate advice at the end of my rope

Wed Jan 09, 2019 9:09 pm by Jma990o

This might be a little long but it's been such a long time I've even been able to talk about my problems openly thank you in advance for any helpful advice.
So ok I'm 24 I've been having this problem for over two years seen quite a few doctors and obgyns alike and nobody will take me seriously I have had a few utis and yeast infections and even bv once and this all started after one of the utis …

Comments: 3


Some interesting information about nerve pain in general

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Some interesting information about nerve pain in general Empty 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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Some interesting information about nerve pain in general Empty 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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