Vulvodynia Support
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» Hope to all my suffering ladies
Only time I don't have burning is when on period. Why? EmptyFri Oct 23, 2020 12:04 am by ringostarr26

» Please tell me this can get better
Only time I don't have burning is when on period. Why? EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
Only time I don't have burning is when on period. Why? EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

» How I cured my Vulvodynia!
Only time I don't have burning is when on period. Why? EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
Only time I don't have burning is when on period. Why? EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
Only time I don't have burning is when on period. Why? EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
Only time I don't have burning is when on period. Why? EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
Only time I don't have burning is when on period. Why? 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!
Only time I don't have burning is when on period. Why? 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


Only time I don't have burning is when on period. Why?

3 posters

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Only time I don't have burning is when on period. Why? Empty Only time I don't have burning is when on period. Why?

Post  peaceplease Wed May 06, 2015 12:41 am

Hi:
I am new here, but not to vulvodynia. Have had it off and on for 5-6 years. For whatever reason, or for no reason it really hasn't been a problem much in the past year.  
Here is my pattern over the past year:  Ok all month, then on the last day of period, with tail end of bleeding I will get burning for 1-2 days. Then I will be ok.
Here is my pattern now: BURN ALL DAY!  Urine and whatever discharge that is coming out of me is what provokes the burning. Better when I sleep at night as I lay flat and less discharge comes out.  Vaginal and urine cultures are all normal. Vagina looks red, but discharge is normal and not smelly etc. Total mystery.

Here is the bigger mystery:
When I get my period, I mean the minute I start to bleed until I get to the tail end of it, I have NO burning.  WHY? If I could figure out what about my period stops the burning on the spot that would be good as maybe I can figure out what my body is needing.  Does anybody know what happens to the ph, vaginal flora etc during the period? What might be in the blood that soothes my vagina?
I am 48 and sure I am in perimenopause, but still have regular periods. I have also had Interstitial Cystitis for 10 years, lucky me.  Just really want to die at this point.  Ready to give up. Crying all day, can't leave the house. Have two kids who need me…

If you have any thoughts about why my period might alleviate my symptoms for a few days while on it I would be most grateful!

peaceplease

Posts : 4
Join date : 2015-05-06

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Post  toosore Thu May 07, 2015 8:25 pm

Just a few guesses -

Blood is slightly alkaline, whereas urine tends to be somewhat acidic. So the blood will reduce the acidity of your urine. Also, I would guess the blood is also acting to dilute any urine, and to form a bit of a barrier. You may want to try a low oxalate diet as oxalate crystals in your urine could be causing the burning pain and also triggering histamine release which leads to redness, burning, and possibly itching. The diet can take some time to really make a difference as things need to calm down. If your problem has been long standing, then you may also have pelvic floor muscle dysfunction from tightening up due to the pain. Then physio and pelvic floor exercises may be needed, in addition to the diet. In the meantime, try peeing while squirting water on the area to dilute urine when not on your period. At 48, you may be starting to have symptoms due to low estrogen. Good luck finding a doctor to help with that! A naturopath may be an option. Low estrogen can cause all sorts of bladder problems, as well as vulvar pain. (I am 52, so I can sympathize with your situation.)

I had to deal with my issues by handling yeast (probiotics and low carb diet), oxalates (low oxalate diet and calcium citrate), and finally physio, simultaneously. Trying them individually over the years did not help. I had to do them all together to get some relief.

I hope you get some relief soon!

toosore

Posts : 18
Join date : 2012-06-18
Location : Vancouver

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Post  peaceplease Fri May 08, 2015 9:10 pm

Thank you very much for your helpful reply. Having had this for so many years, I did try to the low oxalate diet. Don't recall how long I did it for, but it for sure didn't seem to help. It was so long ago. Maybe worth a try again. I tend to be on the thin side and like to weigh more, so I hate doing any kind of diets that restrict my food and I already follow the IC diet more or less and have for years.
I like your idea of using water when I pee to dilute the urine. I will try that with a spray bottle of some sort. I have done PT and it only made me worse, especially internal work.
I really appreciate your thinking about my mystery situation of my periods helping! It was very informative, your reply..
Thank you and all the best.

peaceplease

Posts : 4
Join date : 2015-05-06

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Post  kvelipuri Sun May 17, 2015 6:22 pm

Hi. I had a flare-up some years ago with symptoms different from yours - severe swelling and tearing rather than a burning feeling - but I also noticed that everything stopped while I was on my period, only to get start again afterwards. I had always hypothesized it was something in my discharge, or similarly something with my flora, etc. No probiotics or antibiotics or anti-yeast medicine ever worked, however. I'm currently in the middle of another episode and waiting for my period to begin to see if I can get some relief or if the same pattern will emerge. In doing research this time around, I've noticed some people online have discussed hormonal triggers, for example being on birth control and suffering from low levels of estrogen. Some of these individuals have gone off their birth control or used a compound estrogen/testosterone cream to treat the area. It's just a lead but, perhaps these hormonal fluctuations during your cycle may be something to look into with your doctor.

kvelipuri

Posts : 6
Join date : 2015-05-17

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