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» 7 months since the diagnosis
Prednisone Injections? EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
Prednisone Injections? EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
Prednisone Injections? EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
Prednisone Injections? 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!
Prednisone Injections? EmptyTue Jun 11, 2019 12:56 am by VVSSufferer

» Vestibulectomy next week in London!! - questions!!
Prednisone Injections? EmptyWed Apr 24, 2019 8:32 pm by HedvigB

» Dating with Vulvodynia and Vaginismus advice
Prednisone Injections? EmptyFri Apr 19, 2019 10:25 pm by Tartufo

» Research Participants Needed!
Prednisone Injections? EmptyThu Apr 11, 2019 2:09 pm by PelvicPainProject

» Does anyone else have Endometriosis?
Prednisone Injections? 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


Prednisone Injections?

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Post  WVR00 on Tue Oct 10, 2017 7:33 pm

Hello,
I am new to this forum and have been recently diagnosed with VVS. I had an issue after the use of a condom and I've never been the same since. I don't have pain, per se, but I have this uncomfortable feeling like I have a tampon hanging out all them time. My doctor gave me prednisone injections in vestibule and it helped the one side, but not the other. I also got a raging yeast infection. Has anyone had success with the injections? Her next step is to do laser on the vestibule. I'm very scared this won't go away. I can't take oral medication bc I'm planning for a baby and this has completely derailed that. Sex isn't painful while I'm having it, but really sore the next day or so. I've tried amtrip. Cream, hormone cream, steroid cream and now injections. Do I do any other round and risk the yeast infection? Or do I do the laser? It's so frustrating that the treatment of this is trial and error.
Has anyone has anything similar?

WVR00

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Join date : 2017-10-10

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Post  Warrior2010 on Wed Oct 11, 2017 2:40 am

Please consider pelvic physiotherapy. That lump you are feeling could be a very spasmed pelvic floor muscle(s). The first 3 years of having vulvodynia I had a small child so I just did acupuncture for the 24/7 pain I felt all over my vulva. It helped me cope. Then after a car accident that made things worse to the point where I could't empty my bladder- I saw a pelvic therapist. After releasing all the conceive tissue and exercises etc, I got 75% better - to this day I still can't wear pants because of the lump I feel and I still feel some pain during certain times in my cycle, but for me that was amazing results. I just started pelvic physio again and we are working only on that lump and my spasmed out abdominal's on that side. All this happened after having my child so try and get help before the pregnancy. My best advice. Hope this information helps you and maybe others too.

Warrior2010

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Post  WVR00 on Wed Oct 11, 2017 11:55 am

Thank you for your reply. My specialist did an internal exam and dtold me my pelvic floor was totally fine. Not tight at all. She thinks it could be some type of immflamitory version of VVS, which is why she did the steroid shots. I'm getting a second option next week, but I'm due to get the next round of steroid shots. I'm worried that bc I got the yeast infection from them, that I will get another one. My yeast infections are immune to Diflucan and I need to use 2 weeks worth of cream to even begin to get better. I haven't had that many infections in my life, but for some reason, when I get them they are nasty. This condition is really stressful. Emotionally and physically. I hope everyone feels better.

WVR00

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Post  WVR00 on Wed Oct 11, 2017 12:00 pm

I should also add that the tampon feeling is right at the bottom of my Vestibule.. like right by the glands... almost feels swollen. But doesn't look swollen... all other spots on my vulva are okay. She did the injections at the 5,6,7 o'clock spot she on vulva. The 6 and 7 feel much better, but the 5 still has that feeling of tampon hanging out.

WVR00

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Post  sarisbaris on Wed Oct 18, 2017 5:07 am

I battled V for 15 years. I now consider myself cured. It wasn’t by accident. After 20+ western docs, I realized they couldn’t help. I saw countless alternative. Some helped but none cured. I followed the information from Anthony William. This is no joke. His advice cured it.

According to Anthony William, most cases of V are caused by strep. But since yours is a bit different I have a feeling that they it is caused by an unknown strain of the Epstein Barr virus. I recommend reading the book Medical Medium. Basically, EBV is virus that is currently unknown and undetectable with current tests. Usually EBV causes strep and strep can cause vaginal burning which is usually diagnosed vulvodynia. But during one of it's stages EBV searches out injured nerve endings and inflames them. So a simple injury could hurt for years if you don't tackle EBV. Also, yeast infections are cause by strep (another unknown/undetectable strain). Since EBV and strep go together, I'm guessing that's what you're dealing with.

First educate yourself on EBV and strep. Next listen the UTI show because he has an ice therapy that might help. Next, do the metal detox. Metals feed EBV and strep.

Shows/pages that will help:
https://soundcloud.com/asha-bhuyan/medical-medium-uti?
http://www.medicalmedium.com/blog/epstein-barr-virus-revealed
http://www.medicalmedium.com/blog/heavy-metal-detox
http://www.medicalmedium.com/blog/streptococcus-revealed

My blog: http://myvulvodyniacure.blogspot.com/2016/12/if-you-are-in-pain.html

While you are educating yourself do these things now:
AVOID: eggs, dairy, wheat, corn, aluminium foil, water that is not filtered, canola oil (which is in almost everything
SUPPLEMENTS: licorice root, lemon balm and nettleleaf (3 cups a day), esther C, I usually recommend cat's claw but if your planning to get pregnant soon stay away from it, golden seal (2 times a day, 2 weeks on 2 weeks off),
A green juice would also help. Celery juice is great. Celery/cucumber/parsley or cilantro. See metal detox.
FOODS: Note all the foods he recommends. They make a difference. Lemon water/honey upon waking, green juice, then smoothie, salad for lunch… veggies heal.

Also, he has great shows on pregnancy.
http://www.medicalmedium.com/blog/healthy-pregnancy
https://soundcloud.com/medicalmedium/foods-supplements-for-pregnancy
There's also a great chapter in his second book Healing Foods.

sarisbaris

Posts : 69
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Post  Warrior2010 on Sun Oct 29, 2017 7:38 pm

Honeatly pelvic phyaiitherapist are trained to evaluate the state of your muscles and know exactly what ti do. My gynecologist even admitted to that and said that he refers people there regularly. Doctors only train to asses medical problems not muscle problems. That "tampon hanging out feeling" you described at 5 o'clock is exactly where I feel my lump. That is where the obturator internus muscle. Look it up- you will understand. Injections are not a long term solution. Please rule it out that the priblem is not muscle related. My best advice.

Warrior2010

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