Vulvodynia Support
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» Hope to all my suffering ladies
advice on severe swelling EmptyFri Oct 23, 2020 12:04 am by ringostarr26

» Please tell me this can get better
advice on severe swelling EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
advice on severe swelling EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

» How I cured my Vulvodynia!
advice on severe swelling EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
advice on severe swelling EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
advice on severe swelling EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
advice on severe swelling EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
advice on severe swelling 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!
advice on severe swelling 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


advice on severe swelling

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Post  kvelipuri Sun May 17, 2015 4:58 pm

Hi,

Dr. diagnosed me with vestibulitis a few days ago. As in many cases, we first thought it was a bacterial infection, for which I was given flagyl, metro gel, and then clindamycin. Dr. had noted some clue and many white blood cells which only the clindamycin seemed to resolve. But starting with the metro gel and then after concluding the clindamycin, my vagina started swelling a lot, and the entire vestibule became red, inflamed, and painful. The pain was almost unbearable and has made walking very difficult to almost impossible. That was the point we realized this must be vestibulitis.

I had had this kind of flare-up once before in my life, about 7 years ago. At that time, first I had a vaginal tear and fissure for which I was prescribed a steroid cream, which seemed to worsen the inflammation and lead to more tearing. I was living in another country without great medical care and had no idea about vulvodynia, vestibulitis or anything like that. Eventually the inflammation and swelling went away, maybe after a few months, and I never had any issues again until now - no pain during sex and no pain to the touch. I remember that the inflammation/swelling during that episode always seemed to get better during my period and then would come back, but somehow it just went away on its own.

It's been a little over a week now since this episode, and I'm still having trouble walking, though the swelling is better and worse on different days (though no pain while urinating, interestingly enough). My doctor put me on nortryptiline and said I just have to wait for it to start to work. But I think the real problem is this severe swelling that is causing my pain and some new fissures (sometimes vagina swells so much it is completely shut). Triamcinolone steroid cream, lidocaine, and premarin estrogen cream have not seemed to help with the swelling; if anything, it seems like topical creams and added moisture to the area correlates to an increase in swelling.

I'd appreciate any advice on the following:

1) Anyone else experience such severe swelling? Have you also noticed that topical creams only exacerbate the swelling and sometimes lead to further fissures? Have you had any success with any other treatment just for the swelling?

2) My gynecologist does not seem to be a pro at treating vestibulitis and, her position has been a) stop using the creams if they appear to be making things worse; b) wait for the nortryptiline to work. But my understanding was that nortryptiline would basically lessen any nerve damage pain. In other words, the swelling and inflammation could still be there, but I just won't feel it hurt as much. Is that other people's understanding, or conversely, could nortryptiline somehow lessen my vaginal swelling/inflammation?

3) The fact that previously my swelling has severely reduced during my period (and that right now swelling is very bad just before my period) leads me to wonder if this cause/effect is hormonal (as opposed to something offensive in my discharge). I have been on Trivora for about two years now, but had been on birth control since a young age, maybe from 13-24 yrs old, with a 5-yr break in between 24 -29 (my current age). I've read some posts from people having success using a compound estrogen/testosterone cream (something like .03% estradiol/ .1% testosterone). Has anyone had success with such creams including anyone who had previously experienced negative reactions to topical creams?

Any advice on what to do about this swelling would be greatly appreciated! Thanks for your time!

kvelipuri

Posts : 6
Join date : 2015-05-17

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Post  mrs.optimistic Tue May 19, 2015 4:45 pm

I have been diagnosed with vulvar vestibulitis, pelvic floor dysfunction and vulvitis (which is inflammation of the vulva). For the past four years, I've experienced major swelling, burning and pain anytime during my period or intercourse. The swelling is so bad I immediately take hot baths then rest with ice packs. I have not yet found anything that reduces swelling. When I was recently given fungal creams to apply for bacterial vaginosis, within a week it made the swelling much worst, and even made the skin feel raw. I've also used estrogen on my hymen, no results. I understand your pain!! I would take the pain or the SWELLING any day, its that bad!

mrs.optimistic

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Join date : 2015-05-14

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Post  mrs.optimistic Tue May 19, 2015 4:46 pm

*over

mrs.optimistic

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Post  sailor_moon Sat May 23, 2015 6:03 am

I have suffered unexplained inflammation for the past 2 years. Red and raw, always itchy and it burns leading up to my period on the rare occasion I actually get my period! I often feel my discharge contributes to the itching. I have had every test done under the sun but they all come back negative. I have lost count of how many doctors have looked at me, at least 15-20...all with no answers.

It all started when I came off the pill and at the same time I used a feminine wash so its all hard to tell where it stemmed from. however my most recent specialist ran a 2 months worst of hormone tests and found that I have both low estrogen and progesterone, and a blood test and ultrasound confirmed I have PCOS. On top of this I have chronic gastritis which makes me ill 24/7.

I am yet to have treatment in regards to my hormones as I am due to undergo surgery to see if there are any internal problems that could be causing all my drama. I cant go on HRT in case I have endometriosis which feeds and grows on Estrogen.

I too find any form of cream makes things worse. When I swell or have bad itch i find a warm bath with baking soda the best thing for it. And for really bad burn the good old trusty bag of frozen peas is the best.

I tried both estrogen [burned and made me worse] and testosterone made me swell up so much down there I thought I was going to grow a dick! And I have an innie, not an outtie, so that says how extreme the effect of it was on me!

and once again like you I get the most relief on my period.

did you use oral or vaginal clindamycin? It may have turned into a yeast infection seeing as clindamycin is an antibiotic. Or it may be hormonal.

I was on birth control until a year ago when I realised that if it was hormonal, my blood tests would not be an accurate reading as the pill was in my system and being back on the pill did not fix me anyway so i went off it. Maybe try that and give it a few months for the pill to leave your system then go get tested?

Have they re-tested your discharge since the initial swab?
sailor_moon
sailor_moon

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Join date : 2014-07-06
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Post  kvelipuri Thu May 28, 2015 6:44 pm

An update in case it is helpful to others.

Saw a fabulous provider today, Lucy Treene in Washington DC, who is a PA and not an MD. She specialized in treating vulvar pain. She had no problem immediately diagnosing my vestibulitis. Her diagnosis was that the pill was the culprit. I had been on Yaz when I first got my period to help with the cramps and bleeding. I was on it for many years, then off, then on (though a different pill) when I had a bad flare-up seven years ago, then off, and now on again when this latest episode occurred. My PA told me that Yaz in particular has a very high dosage of progestin - almost 2 or 3x other pills - which severely dries out the vagina and vulva. She advised me to come off birth control and then prescribed a topical estrogen/testosterone compound that I should apply 2x per day. Relief should come after 6-8 weeks, so fingers crossed.

She did say that an estrogen cream I had been prescribed could not work without coming off birth control. Also, she predicated that topical yeast infection creams like monist at will always trigger a flare-up. And antibiotic creams also dry out the area, which is likely why this episode occurred after a using a metronidazole gel and clindamycin cream.

kvelipuri

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