Vulvodynia Support
Would you like to react to this message? Create an account in a few clicks or log in to continue.
Log in

I forgot my password

Latest topics
» Hope to all my suffering ladies
New member thankful for this support system in this horrible nightmare  EmptyFri Oct 23, 2020 12:04 am by ringostarr26

» Please tell me this can get better
New member thankful for this support system in this horrible nightmare  EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
New member thankful for this support system in this horrible nightmare  EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

» How I cured my Vulvodynia!
New member thankful for this support system in this horrible nightmare  EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
New member thankful for this support system in this horrible nightmare  EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
New member thankful for this support system in this horrible nightmare  EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
New member thankful for this support system in this horrible nightmare  EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
New member thankful for this support system in this horrible nightmare  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 member thankful for this support system in this horrible nightmare  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 member thankful for this support system in this horrible nightmare

3 posters

Go down

New member thankful for this support system in this horrible nightmare  Empty New member thankful for this support system in this horrible nightmare

Post  cupcake25 Tue Jul 16, 2013 9:13 pm

Hello everyone. I am so grateful to have a place to tell my story. I apologize for how long this is, but I just need some insight

I'm 25 and was diagnosed with vulvodynia 2 months ago. My issues began last year when I decided to try the Depo Provera birth control shot. Biggest mistake of my life!!!! I believe this was the start of my vagnial issues. I never had a yeast infection/bacterial infection before the depo shot, though if I think about it I have always had instances of painful intercourse, and have never been able to wear tampons comfortably.

So, about 4 months into taking the Depo shot I began a terrible cycle of illnesses. I had the flu for months, and on top of that began having excess vaginal discharge. I visited my gyno at the time (second biggest mistake of my life) who didn't bother to take a culture and simply gave me a gel for BV. To my surprise the gel didn't help. I returned and was given the same antibiotic in pill form, which made the discharge worse. At this point I was not only dealing with discharge but began feeling a faint discomfort, a sort of burning, aching sensation. I switched to my primary doctor at this point, began taking a THIRD round of the SAME
antibiotic, and halfway through received a phone call from the  office informing me that the whole time they were treating the wrong bacteria. I began another round of antibiotics plus Fluconazole (just in case), and still didnt feel better, and began feeling pelvic pain and pressure. After a final round of antibiotics, this time for a UTI  (which I don't believe I ever had), my primary care doctor said she could no longer help and sent me to a specialist. At this point my stomach was a mess from the antibiotics and my vagina was red and raw and burning.  The specialist sent in a culture for everything you could possibly have, and prescribed the vaginal lubricant/prebiotic Luvena, which helped the pain immensely. The results of the culture were not surprising: Candida Albicans. I was so relieved I almost cried. I began a Fluconaole regimen of one pill a day for 7 days. I cannot describe my dismay when this didnt make me feel better. The red raw feeling went away, but I was still having faint aching, itching, and burning. The specialist informed me after two more visits that there was no yeast (by visual diagnosis only) and diagnosed vulvodynia. She prescribed Zoloft, which made me desperately depressed, new birth control which made me extremely sick to my stomach, and lidocaine. Now, about a month later, I've quit all birth control and had my first period after 8 months. A couple days before my period started I felt like I was on fire! I was in so much pain, the burning horrible. I switched to all cotton, organic pads and liners with no relief. Once my period stopped I took a second round of 7 day Fluconazole, but only had relief for one day before the aching, swelling, and burning returned. Unfortunately I have to wait a week to see the specialist again.

I'm so confused and tired. My relationship is strained by the lack of intimacy, and I'm at the end of my rope. Just when I think it's gotten too much to handle, it seems to get worse. I'm way too young to have a sexless relationship. Is there something the doctors are missing? My primary care doctor did inform me that I have a strep b overgrowth, but that they don't worry about that because its supposed to be harmless unless you're pregnant.

Is it yeast? Is it some weird bacteria? What the hell is going on? I feel like I'm trapped in a hideous nightmare.


Last edited by cupcake25 on Tue Jul 16, 2013 9:14 pm; edited 1 time in total (Reason for editing : Typo)
cupcake25
cupcake25

Posts : 43
Join date : 2013-07-14

Back to top Go down

New member thankful for this support system in this horrible nightmare  Empty Re: New member thankful for this support system in this horrible nightmare

Post  Sarah001 Wed Jul 17, 2013 9:17 pm

We've all been down the UTI/yeast/B.V road so you're not alone, doctors "diagnose" those things because they are commonly found in women but the only way to be sure is ask them to culture a swab and a urine sample so they can see exactly what's happening. Don't use anymore creams or take anymore antibiotics until you know what's there and what's not because they can make matters much worse. If it is yeast they can do a lengthy treament of oral tablets only so that could be ruled out. If you found using a probiotic lube a great help I'd add a supplement orally too if you haven't already and Vitamin D3 is very good for the immune system so that might help too. It might be an idea to go down the hormone testing route if those things don't work, expect barriers if you ask though because lots of ladies get told it can't be done because of how our hormones fluctuate each month but stand your ground if it's something you want done, I'm not sure where you're from but here in the U.K doctors aren't keen to test hormones unless your cycle has become abnormal. I want to clarify that they also don't mean abnormal to you they mean abnormal by the general population standards. If you're from the U.S you have a much better chance of getting the test done without much resistance. The book "When Sex Hurts" is excellent for helping figure out the cause and available on Amazon, I highly recommend it and once you know what is a possibility and what isn't it will give you a list of possible causes and treatments to start working through. It also has more detail about the hormone testing too. Good luck and don't give up, but please don't just slap anything downstairs they give you because it can make things so much worse. Wink 
Sarah001
Sarah001

Posts : 1164
Join date : 2010-06-11
Age : 50
Location : UK

Back to top Go down

New member thankful for this support system in this horrible nightmare  Empty Re: New member thankful for this support system in this horrible nightmare

Post  cupcake25 Fri Jul 19, 2013 6:05 pm

Hi Sarah! Thanks so much for your response. I expect hormones to be my root issue. Hormones messed up by birth control mixed with my immune system being compromised  because of the golden combo of celiac disease + the depo provera shot = bad bad bad. If only someone had told me the depo messes with your immune system!!!! Shame on me for not researching...
Anyhow, considering I never suffered a vaginal infection prior to the birth control fiasco, I'm hoping once it's all out of my system my body will regulate itself. If it does not, however, hormone testing will be a necessity. I have a feeling right now the testing won't be quite accurate because I just quit birth control a couple weeks ago. I also realize once certain infections (like yeast) get a foot in the door it's tough to get rid of them Sad.

I've been taking an oral probiotic for my stomach for a year or so, and it works wonders for tummy troubles. I'm sure it helps down there as well, though my gyno swears it only works if you apply it down there.
I actually began taking a Vitamin D supplement a couple days ago, and maybe it's in my head, but I swear I already feel better...

Best wishes,
Cupcake
cupcake25
cupcake25

Posts : 43
Join date : 2013-07-14

Back to top Go down

New member thankful for this support system in this horrible nightmare  Empty Re: New member thankful for this support system in this horrible nightmare

Post  Elc88 Sun Jul 21, 2013 7:58 pm

These stories all sound so familiar... Although if you have just had a contraceptive injection, is there a chance you have an STI/STD? It's another intrusion, but it's worth going to your sexual health clinic if your swabs didn't already test for it. Definitely stand your ground and say no more creams and pills until you know what it is. You can use emulsifying ointment on a daily basis as a moisturiser, which can ease your discomfort. It's a fairly neutral waxy ointment, most pharmacists keep it behind the counter, but it's not too expensive.

You are really lucky to only have to wait a week between Gynaecologist appointments - I typically had to wait between 16 weeks to 6 months!

Elc88

Posts : 55
Join date : 2013-07-20

Back to top Go down

New member thankful for this support system in this horrible nightmare  Empty Re: New member thankful for this support system in this horrible nightmare

Post  cupcake25 Sun Jul 21, 2013 9:01 pm

Hi Elc88! Thanks for your response.
Yes, I'm finding more and more my experiences are so similar to those of other women, which is heartbreaking. If only I had been more educated when this first happened--
I didn't even know what BV was!

Fortunately I have been tested about 1,000 times for every STD under the sun, and am clean. I have been in a committed relationship for a while as well. I was diagnosed with genital herpes years and years ago, but I never have outbreaks (knock on wood) and don't see any correlation between the issues.

I'll look into the moisturizer you recommended. It's worth a shot! Thankfully I see my doctor soon O_O

Wow, I'm sorry you had to wait so long for appointments. I've become so accustomed to being in the doctors office every week so that sounds like torture! Part of my issue is being impatient, though. I've bounced between doctors-- which did far more harm than good.
cupcake25
cupcake25

Posts : 43
Join date : 2013-07-14

Back to top Go down

New member thankful for this support system in this horrible nightmare  Empty Re: New member thankful for this support system in this horrible nightmare

Post  Sponsored content


Sponsored content


Back to top Go down

Back to top

- Similar topics

 
Permissions in this forum:
You cannot reply to topics in this forum