Vulvodynia Support
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» Hope to all my suffering ladies
New here . . . EmptyFri Oct 23, 2020 12:04 am by ringostarr26

» Please tell me this can get better
New here . . . EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
New here . . . EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

» How I cured my Vulvodynia!
New here . . . EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
New here . . . EmptyWed Aug 14, 2019 2:38 am by agtoronto

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

» IMPORTANT FOR UK SUFFERERS
New here . . . EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
New here . . . 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!
New here . . . EmptyTue Jun 11, 2019 12:56 am by VVSSufferer

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


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Post  Guest Fri Feb 22, 2013 12:39 am

My name is Tina, and I believe I have vulvodynia. My vulva is always very irritated and itchy. I also have interstitial cystitis (have had it for over 20 years). I live in the Atlanta area.

Guest
Guest


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Post  meelie Sat Feb 23, 2013 1:22 am

Hi Tina, just saw your post. I live in Barnesville just south of Griffin north of Macon. I was started burning Sept. 4, was diagnosed in October.
As far as I know I don't have IC but everything I read says they seem to go hand and hand. My came after bouts with IBS and then some awful constipation.
I went to two Dr.s, one a "specialist" at Emory and the other here in Griffin. I finally gave in and went to my regular gyn thinking she can't be any worse. I think she actually knows something and I know she cares. She has me on Neurontin 300mg at bedtime and Flexeril two times a day.'I also take Xanax at night to sleep. I have been on these for 7 weeks now and so far I am better, as long as I take my medicine. I came off the Neurontin for 2 days thinking it was causing a skin problem on my face and the pain came back horribly. It doesn't completely go away but it at least takes the edge off and actually goes away as I sleep. Comes back as the day goes on. I truly believe it is a result of bunched up pelvic floor muscles and or a pudental nerve being pinched. I had a horse riding accident 4/30/2011 and broke my left pelvis and have been sitting on my right buttock for almost a year and a half when this started. At least this is what we are working with. I also have been going to my chiropractor since October once I had the guts to tell him what is wrong and asked if he could help. He said he thought so.
Anyway, I'm going to keep this up for at least 6 more months before I try and come off of any of the medicines.
Tell me about yourself.

meelie

Posts : 136
Join date : 2013-01-09
Location : Barnesville, Ga

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Post  Sadgirl Mon Mar 18, 2013 1:05 pm

For starters Tina, as well as Meekie, I'm so sorry your both dealing with this and I empathize greatly. Sad I have been dealing with the issue of IC and pelvic floor damage for more than eight years. I havent figured out which it is linked to I was raped around that time, and shortly after i had my first child whom was breach and i had to have an emergency c-section. In addition I suffer from IBS and have since puberty, the Dr's also did some additional testing due to having numbness, pain, tingling in my legs and the extent of pain I have in my lower back even without intercourse and also found I suffer from arthritis. Which was a little surprising, not at all what I was expecting I guess it's common to some degree but I'm only 31 and have arthritis like one would see in someone 45+ not my age. There's nothing really they could do just offer me pain medicine which is not what I want or would fix the problem so I opted not to. I have done physical therapy for years, and medications, stress release (excersise, meditation, stretching, hobbies, etc), but recently had a consult with another physical therapist that specializes in IC and pelvic floor damage and said she would work on internal therapy? My past IC and pelvic floor damage therapist worked on stretching, excursuses, and a little adjustments like a chiropractor. I have found much relief with message therapy, too bad my insurance won't cover it even when written as a prescription. I have no idea what this means and quiet honestly am pretty nervous to guess. I'm wondering if any of you have tried this, what it entails and has it been successful? I'm a very modest person
and this condition makes that difficult to begin with, as scared as I'm if this could help I
might try it, but to go through something that sounds pretty humiliating and have it not help I don't know I could handle that well.

Sadgirl

Posts : 4
Join date : 2013-03-18

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Post  Guest Mon Mar 18, 2013 2:22 pm

My apologies for not getting back sooner. I did do internal massage with a practitioner for a while, and then the insurance wouldn't pay for it anymore. The internal work I had done just involved someone with a gloved hand inserting a finger into the vagina, pressing, and then releasing. I guess that would be myofascial pain release?

Sadgirl, it's just similar to having a pelvic exam. Do pelvics bother you, either physically, modestwise, or both?

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Post  meelie Mon Mar 18, 2013 2:29 pm

Don't think I could handle the internal massage or stretching. What kind of other massage do they do? Is there anything I can do myself and get my husband to do. I just can't afford to go to a PT we are both on Social Security and Medicare and they don't pay for much.
Do you know anything either one of us can do outside the vagina? Question

meelie

Posts : 136
Join date : 2013-01-09
Location : Barnesville, Ga

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Post  Alana3 Mon Mar 18, 2013 2:41 pm

Meelie,

I also had a horseback riding accident and hurt my right hip so everything on that side is jammed. Ouch! You can get a foam roller and roll on the side that hurts, it may help release it, they can be purchased at Sports Authority for like $20. But the internal pt helps a lot too, if you can stand it, you can get a vibrator or dilators and trigger the muscles yourself (I read that you couldn't afford a therapist). It's gonna kill at first, but its worth it. Also, an exercise you can try is to breathe out and stick out your stomach as far as it can go, it releases the muscles and feels so good!!! Try getting a prescription for valium and putting the pill in your vagina, that may help too! Just don't get too hooked on prescriptions and do too much at once, you won't know what's helping (or hindering) your pain.

Alana3

Posts : 1093
Join date : 2012-09-25

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Post  Applejax Tue Mar 19, 2013 12:41 am

Sadgirl - what kind of arthritis do you have? I have rheumatoid arthritis and take medications to stop the progression of the disease and sort of keep it in remission. I don't like taking the meds but it's essential to keep it from getting worse. I'm also in the process of figuring out which treatment will be best for my vulvodynia. Right now, I don't have a definitive diagnosis or specific treatment plan. The doctors I've seen haven't agreed on what's causing my pain. Physical therapy was recommended by one of them. My husband naively said, "Well, at least it won't be invasive." I then explained to him that it isn't your normal 'run-of-the-mill' PT. He was pretty shocked about it. To be honest, I'm not sure I could handle it either. Right now I'm not too willing to endure any pain. I decided back in October that I was done with intercourse, so, pretty much done with pain until I decide on what the treatment will be.

Applejax

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Join date : 2013-01-29

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