Vulvodynia Support
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» Hope to all my suffering ladies
New here and in need of a pick-me-up EmptyFri Oct 23, 2020 12:04 am by ringostarr26

» Please tell me this can get better
New here and in need of a pick-me-up EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
New here and in need of a pick-me-up EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

» How I cured my Vulvodynia!
New here and in need of a pick-me-up EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
New here and in need of a pick-me-up EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
New here and in need of a pick-me-up EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
New here and in need of a pick-me-up EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
New here and in need of a pick-me-up 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 and in need of a pick-me-up 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


New here and in need of a pick-me-up

3 posters

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Post  horsejumper Thu Dec 04, 2014 1:37 am

Hi everyone,

I'm new here (but not to V, sadly). I wanted to share my story and see if anyone is has been in the same boat.

The first time I tried to use a tampon (I was around 13), putting it in was OK. Taking it out was absolutely agonizing. 9/10 pain. I've never used a tampon since. When I was around 15, I went to the gyno for probable ovarian cysts. Again, the internal exam was agonizing, but the doctor didn't say that it wasn't normal to be in that much pain. Had sex for the first time at age 19. It was OK. More soreness than the burning pain that accompany tampons/exams, and some deeper internal pain, but not enough that I stopped. Shortly after, I went to get my first annual, and my new doctor told me being in so much pain for the exam wasn't normal. He referred me to a very highly regard medical school's specialist for vulvodynia.

At this time my only symptoms were burning provoked by touching the vestibule and very occasionally unprovoked burning. My specialist did the Q-tip test, which I failed with flying colors--no pain on thighs, labia, etc., but everything inside Hart's line was bad. 5-9/10 bad, depending on the spot. Started me on amitryptiline, where I noticed some improvement and had the only pain free annual (with full sized speculum!) of my life. Improvement halted and she started me on gabapentin, too. I didn't notice much of a difference with that.

Last spring (2014), I saw a partner of my normal gynecologist who I'd never seen because I was having cyst pain and needed to get in right away. Cyst confirmed on R ovary, but more relevant is that he said he had great success with doing submucus lidocaine/methylpresinisolone injections directly into the vestibule. I thought "Why not?" and did the recommended 3 rounds of injections in 3 weeks. First round caused the entire vestibule to go numb--I couldn't tell when he was/wasn't touching me. That faded after some hours, and the remaining two rounds didn't do much.

At that same time, I began to have burning just before and especially after (but not DURING) urinating. I was so convinced I had a bladder infection that I had 3 urinalyses done at different doctors, and everyone said no bladder infection. Also, my clitoral area became more tender than normal to the touch, and after a few months, tender turned into painful. Touching it (even just the hood) is tender-painful now, even when I'm gently cleaning everything (water only) in the shower.

Saw a new specialist at the beginning of November. I was diagnosed with IC (although I don't have bladder symptoms, only urethral), confirmed vestibulitis and pudendal neuralgia, and added pelvic floor dysfunction (the only doctor to EVER consider an internal contributor to my pain). I started some meds for IC and am continuing on my amitryptiline (I've been on it for 3 years now). Next month I'm going to retry gabapentin. I also am using lidocaine cream in the vestibule as of last week, which HOPEFULLY will retrain the nerves and give me some long-term relief, and I'm seeing a pelvic floor therapist.

After 3 appts with my pelvic floor therapist, she said she noted a difference in color (my vulvar area looked healthier) and notable relaxation of my pelvic floor muscles. This, coupled with a day of no urethral pain, gave me a high today! And then I did a self-exam at home, complete with a Q-tip test. Absolutely no improvement in that regard. It was so painful I couldn't check the whole vestibule. Damn burning.

I just feel somewhat in a different boat than other people. I can have sex (at least I could, I haven't had any [not by choice] since clitoral pain started) with enough comfort to enjoy myself (though not pain-free). I was going with just vestibular burning for years, and then BAM! Clitoral and urethral pain. Honestly, the clitoral pain is what gets me the most right now. Not in that it's debilitating, but it's a worse kind of pain for me...I can handle the burning, which lidocaine also helps, but the tender-pain is scary in that it's not external--lidocaine doesn't do anything, and I can't just push through the pain even if I wanted to.

My new specialist has done a really good job explaining the mechanisms of the pain and what's causing it, and I understand what's going on. I just am particularly down about it right now. I'm 22 years old and just want to at least reclaim my clitoris. I'm not usually down about my condition at all, today was just rough with the elation then letdown.

To top it off, I have piriformis syndrome (related to the pelvic floor dysfunction; if you haven't heard of it, it's a muscle in your butt that the sciatic nerve runs through), and I've been cramping for two days straight after a week of relief. UGH.

End of rant. I really just wanted to share this with someone...anyone!

horsejumper

Posts : 6
Join date : 2014-11-30

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Post  Alana3 Mon Dec 15, 2014 7:58 pm

You sound like me and we have another thing in common- horses! I'm sorry to hear about this it sounds like me except I don't have IC tho it was suspected at one point. It sounds like you have non-provoked vuvlodynia, and I am very sorry to hear it Sad I really dont have any advice, but just to say hi and I know what you're going thru. And the frustration is the worst. Where are you from??

Alana3

Posts : 1093
Join date : 2012-09-25

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Post  horsejumper Mon Dec 15, 2014 8:29 pm

I'm from Michigan but currently live in New York. Yes, the frustration really is the worst. After living with this for ten years and trying to get it treated for three, I'm just ready for it to be done with!

horsejumper

Posts : 6
Join date : 2014-11-30

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Post  Alana3 Tue Dec 16, 2014 12:59 am

What part of Michigan? I hear you just be patient (as if 10 years isn't enough to be patient with) have you seen Dr. Goldstein? He's supposed to be the best up there and he's in New York!!! And D.C. I think you should check that avenue out. I will caution you tho, most specialists don't take insurance, mine doesn't- but it was totally worth it!

Alana3

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Post  meelie Sun Dec 21, 2014 2:10 am

I talked to a spine specialist that told me about a spine stimulator that you can actually try before they insert it. It interrupts the pain signal from getting to your brain. Has anyone ever heard about something like that.

meelie

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

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Post  horsejumper Mon Dec 29, 2014 7:52 pm

I'm from southern MI. I actually see a specialist in Pennsylvania right now--Dr. Echenberg at the Echenberg Institute for Pelvic and Sexual Pain. He's amazing.

horsejumper

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Join date : 2014-11-30

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