Vulvodynia Support
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» Hope to all my suffering ladies
Vulvodynia is ruining my life EmptyFri Oct 23, 2020 12:04 am by ringostarr26

» Please tell me this can get better
Vulvodynia is ruining my life EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
Vulvodynia is ruining my life EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

» How I cured my Vulvodynia!
Vulvodynia is ruining my life EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
Vulvodynia is ruining my life EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
Vulvodynia is ruining my life EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
Vulvodynia is ruining my life EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
Vulvodynia is ruining my life 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!
Vulvodynia is ruining my life 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


Vulvodynia is ruining my life

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Post  amy124 Tue Aug 16, 2016 2:33 pm

Hi everyone. I've read through a bunch of your stories and I am so glad I found this forum. I've felt so isolated in my issues but it's reassuring to find a group of people who seem to be experiencing something similar to what I have been experiencing...although I would never wish this on you all because it sucks.

I'm 18 years old and I've been struggling with all sorts of bladder/vaginal issues for about a year. Experienced no pain, sensitivity, or any issues and had painless sex for about a year before all these issues started. I started getting urinary pain and soreness every month around my period and after sex. I went to numerous doctors who all told me I had UTIs and treated me with antibiotics (I tried cipro, bacterium, nitrofurantoin, macrobid, etc.) ...I was treated 8 or 9 times within 6 months. All these courses of antibiotics gave me yeast infections (of course) so I was also treated for those too. I finally went to a new doctor with yet another UTI. She did a urine culture and told me I didn't have a UTI this whole time and she wasn't sure what was causing the pain. She gave me antibiotics anyways and, like all the previous times, the symptoms went away for the most part. However, since I began treatment for all the UTIs, the burning pain when I pee has not completely gone away. It is bearable and I can live with it but it's definitely annoying. I feel like I'm not really emptying my bladder all the way. My symptoms seemed to, for the most part, go away for a month or two (minus the burning when I pee). The past 3 months however have been awful as a whole new set of issues have emerged. Now, I have intense burning in my vulva area that randomly happens for days at a time then goes away for days or even a week or two. It usually happens closer to my period. Sometimes so painful I can't walk or it wakes me up at night. It feels raw and on fire and it burns to pee but definitely doesn't feel like a UTI. It seems to be an external skin issue as I don't have much burning inside my vagina. I have visited 4 doctors who tested me for all sorts of STDs, yeast infections, UTIs, bacterial vaginosis, did pelvic exams and told me they can't find anything wrong. I changed my clothing detergent, I drink more water, I wear cotton underwear and avoid tight clothing, I use vaseline on the area, I try to limit processed food and sugars, I don't drink caffeinated drinks, but nothing seems to be helping. I am in a relationship and I have pretty much stopped having sex entirely because I am terrified that it will cause more pain (also, my boyfriend got tested for STDs too and came back clean). I'm only 18 and its so frustrating that I am already losing my desire to have sex at all due to all these stupid issues. All my doctors told me this is just something I will have to live with. I feel like I'm going crazy because no one believes me since all my tests come back negative and physically I look fine. I was so relieved when I found this forum because all the problems described here are exactly what I'm experiencing. So glad Im not alone in all these issues.

amy124

Posts : 1
Join date : 2016-08-16

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Post  emalita Tue Aug 16, 2016 4:11 pm

Hi amy124,

I'm so sorry you're having to go through all this.

You had a lot of antibiotics and yeast medications in a short period of time. My issue was caused by being over prescribed antibiotics for what I thought was a UTI that wouldn't go away. I had a confirmed UTI that was cured during one of the initial rounds of antibiotics, but the pain continued because the antibiotics destroyed my healthy flora. Your flora can be out of balance without you having an actual infection, and your vulvar skin can be super irritated from any yeast creams used as well as any excess discharge that you may have had from your flora being out of whack.

If you think you have a UTI in the future, I would suggest looking into having some D-Mannose on hand to see if that will get rid of it without antibiotics. Do a google search and do some research on it. It has a lot of good information supporting its use for UTIs.

For your flora, you could try some probiotics meant for vaginal health to see if it helps improve things. Unfortunately, for me, they did nothing (test confirmed they didn't increase my good bacteria), and I've found that it just took a lot of time to get things to calm down once I stopped throwing product after product at it.

How long has it been since you've used any medication or product vaginally? When was your last round of antibiotics?

emalita

Posts : 249
Join date : 2016-03-29
Location : USA

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Post  PainBlogger Tue Aug 16, 2016 4:44 pm

Just because the doctors can't see anything wrong and tests show up negative for things doesn't mean your pain is not 100% genuine. And it doesn't mean you'll have to live with this forever. If you haven't already then I'd recommend a referral to a pain management specialist. Gynaecologists/dermatologists/urologists are not always great at treating chronic pain when they can't find an obvious cause to treat. Pain specialists are experts in medication for chronic pain. Physiotherapy/PT may also help you.

You can read my story here: https://vulvodyniasupport.forumotion.net/t2291-four-months-of-significant-improvement

I've had a lot of urinary issues. I still can't empty my bladder properly (it empties fully but it fits and starts rather than one continuous flow). But I'm heaps better than I was. It can take time to find the optimum treatment regimen (and often it's a combination of things needed) but don't lose hope. The best general advice I can give you is to be stubborn. It can be hard when you're in pain and your energy is sapped, but people do get better from this.

PainBlogger

Posts : 219
Join date : 2015-07-27

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Post  WaahwaahUK Wed Aug 17, 2016 12:39 pm

I echo the sentiments already expressed here. Personally I ended up in awful pain I feel partly from being over prescribed creams like steroids and thrush treatments when my GP didn't know what was actually wrong. I would say now be cautious what you use there whilst you are in pain, and perhaps look to more specialist help. Don't give up. If possible get a physiotherapist who specialises in women's health to assess you. There are so many causes and contributory factors to this kind of pain. As PainBlogger said, be stubborn. In the meanwhile I'm sure you can see from other posts, that keeping things natural and keeping irritants away from that area as much as possible will help. You're not alone.

WaahwaahUK

Posts : 117
Join date : 2015-07-31

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