Vulvodynia Support
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» Hope to all my suffering ladies
I'm New! and recovering from surgery EmptyFri Oct 23, 2020 12:04 am by ringostarr26

» Please tell me this can get better
I'm New! and recovering from surgery EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
I'm New! and recovering from surgery EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

» How I cured my Vulvodynia!
I'm New! and recovering from surgery EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
I'm New! and recovering from surgery EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
I'm New! and recovering from surgery EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
I'm New! and recovering from surgery EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
I'm New! and recovering from surgery 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!
I'm New! and recovering from surgery 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- …

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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 …

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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 …

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I'm New! and recovering from surgery

3 posters

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I'm New! and recovering from surgery Empty I'm New! and recovering from surgery

Post  Chrisk Mon Feb 24, 2014 5:18 pm

Hi all, I'm so happy to find this forum! After trying many things over a long period of time to address dyspernia, my doctor advised a posterior vestibulectomy. I'd read up on it, and it sound promising, and last week Tuesday I had the surgery. I'm 55, menopause for several years, and never had surgery before. I know we all recover at our own pace, but I'm a bit worried because I was told the first 3 days would be uncomfortable, and one week off work was all I would need. Sounded like a mosquito bite!

Alas, but today is 6 days since surgery, and I am still wrestling with all sorts of strange things. I'm still having discomfort sitting normally, can't imagine trying to commute to work and then sit all day at my desk!.

But what's bothering me most is that my bowels are not back to normal (I'm vegan and usually poo 2-3 times a day. Fibre is not a problem for me, but I'm finding it difficult to properly empty and when I wipe, it feels like maybe there are stitches overlaping or something.. does that make any sense?) Anyway, I'm only going once a day and only little bits of flat stool .. I feel toxic and gassy because I can't empty. Could something have gone awry during surgery? Or is it normal for the body to take this long to get back on track after surgery/pain meds. (I stopped taking the pain meds after 3 or 4 days because of this.)

Also, my doctor had said to continue taking vagisil a day or two after the surgery. I waited five days, took the first one last night, and had a very strong reaction to the hormone. My body is still cool to the touch, although the dizziness and nausea are starting to ease up now.

I'm wondering if anyone else had had this surgery. And what your experience has been. It's my first surgery, and I don't have much to go on to understand if this is all just normal, or if/when I should get worried..

BTW - The doctor told me 4 weeks before attempting intercourse, but at this rate, I'll likely wait twice that!

Chrisk

Posts : 13
Join date : 2014-02-24
Location : Canada

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Post  Alana3 Mon Feb 24, 2014 6:12 pm

Hi!
I had a vestibulectomy December of 2012. It was the best thing I have ever done for myself. Yes, the bathroom issue was an issue for me too I think it took 4 days before I could go to the bathroom. I solved this by taking Colace (a stool softener) so I didn't have to strain when I finally did go let me tell you best feeling ever! So if you haven't got that I would recommend it. But yes, that is completely normal after any surgery!

Please remember that everyone is different. What's good for one person may or may not be good for you. I didn't go back to work for 2 weeks and even then I took half days- but sitting can be uncomfortable just do what works for you. My doctor told me definitely 6 weeks recovery and than I did physical therapy and dilators before I attempted sex again(which I waited a year due to no bf). Now besides my endometriosis (which I'm getting surgery Friday yay thrill) I have virtually pain free sex. My best advice is to keep icing your hooha and take it easy.

I wasn't aware vagisil was a hormone (isn't that the suppository?) But seriously this surgery was the BEST thing I ever did I couldn't have sex before this and it turned my life around so hopefully you get the same results!

Alana3

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Post  Chrisk Tue Feb 25, 2014 1:06 pm

Alana3 wrote:Hi!
I had a vestibulectomy December of 2012. It was the best thing I have ever done for myself.
Thanks for saying so! It helps to hear that right now  Very Happy 

Alana3 wrote:
Please remember that everyone is different.  What's good for one person may or may not be good for you. I didn't go back to work for 2 weeks and even then I took half days- but sitting can be uncomfortable just do what works for you.  My doctor told me definitely 6 weeks recovery and than I did physical therapy and dilators before I attempted sex again(which I waited a year due to no bf).  Now besides my endometriosis (which I'm getting surgery Friday yay thrill) I have virtually pain free sex.  My best advice is to keep icing your hooha and take it easy.


Okay, thanks. I am just different. I'm not the person who recovers in two-three days. I'm the person who recovers in weeks and that's okay too. My only concern at the moment is that my poos are all flat-ribbon-like. That's new since surgery. So for the moment I'm just keeping a journal of it to see if it self-corrects or not. Could be related to the issue I had a few years ago with rectocel, which was corrected thru physiotherapy.

Alana3 wrote:
I wasn't aware vagisil was a hormone (isn't that the suppository?) But seriously this surgery was the BEST thing I ever did I couldn't have sex before this and it turned my life around so hopefully you get the same results!

Yes, the vagisil I take is a very low dose of estrogen. It's administered as a vaginal suppository. With such a strong reaction after taking my first post-surgery dose, I've decided not to take another for a while. probably should run that past my doctor..

Thanks again for sharing your story and advice!

Chrisk

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Location : Canada

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Post  Alana3 Tue Feb 25, 2014 1:37 pm

Honestly im sure youre fine surgery does weird things to your body. I didnt mean to compare my healing to yours at all tho I said weeks not days I thought. Thats weird that hed want you to put anything in your vagina that soon. My doctor told me nothing in my vagina for 6 weeks but again everyone is different. Anyway lots of ice and rest I think you'll be pleased with the results tho when its all said and done.

Alana3

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Post  Chrisk Thu Feb 27, 2014 1:23 pm

Thanks so much. I have found your responses to my questions about the posterior vestibulectomy surgery very helpful.. I wondered if I could have your take on this..

My body seems to be starting to settle down in a lot of ways now, since my surgery 9 days ago today. One thing is new, and I'm not certain if it's normal healing or not. Starting day 7, i noticed a vaginal odor, and it's been getting worse each day. (Today is the third day.) No discharge of any sort. But it feels similar to a yeast infection.

My husband thinks it could be normal part of the healing, stitches disolving or some such thing. After years of issues I don't know what to think about it. Do you recall having any such issue post-surgery? Could this be normal part of healing or something of concern?

Again, many many thanks to you!

Chrisk

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Location : Canada

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Post  Alana3 Thu Feb 27, 2014 2:13 pm

Yes! This might sound gross but I was afraid to touch it after surgery so my hooha smelled a bit haha and developed into a yeast infection (luckily my dad is a doctor too so he wrote me a diflucan). It cleared right up with the diflucan and called my doc he said don't be afraid to clean it (and YES its a huge mental thing with women who have vulvodynia so he said I'm not different than anyone else haha nice to know). So maybe call ur surgeon and see what he says! It could be yeast or a bacterial infection or just how your body heals naturally! But don't be afraid to wash down there because apparently "you can't screw it up" haha who knew?

But also keep in mind when any wound heals it itches, so that could honestly be what it is too! Because it def started itching badly around 2 weeks when everything was settling down.

Alana3

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Post  Chrisk Thu Feb 27, 2014 3:02 pm

That's been my issue too! I've been afraid to clean too thoroughly because I didn't want to disturb anything anywhere near the surgical areas.. although I have been doing some light gentle cleaning and taking lots of sitz baths.

Anyway, thanks for your support. I just called my surgeon's office and was told he's not in the rest of the week, but the assistant there said that odor is not a normal part of the healing process, and that I should go to my family doctor to get a swab done.. I'm going around 5pm today.

It feels like a yeast infection to me at this point.. but let's see what my doctor says.. I'm so relieved to now have a course of action for this. Thanks so much for your support!

I'll post again once I learn what it is..

Chrisk

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Post  Alana3 Thu Feb 27, 2014 4:14 pm

no worries just make sure they know not to upset your stitches most doctors or people for that matter don't know what a vestibulectomy is!

Alana3

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Post  Chrisk Sun Mar 02, 2014 4:22 am

My family doctor took a swab on Thursday and told me the results should be in on Monday. She also did an exam and said everything seemed as it should be. But since then, the burning sensation has been increasing and tonight I went out and was sitting for all of two hours, and now the burn is really bad. Monday can't come soon enough.. but I'm also afraid the swab will show nothing, and I'll have to call my surgeon's office again.. This is frustrating.. and I'm supposed to return to work on Tuesday..

Chrisk

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Post  Alana3 Sun Mar 02, 2014 7:57 am

Not sure why she couldn't see yeast it's fairly obvious. At any rate should have given you something. Try making a paste with baking soda and applying.for a few.minutes. im recovering from a surgery too I'm in so much pain tonight I cant even sleep. But baking soda should at least alleviate the burn a little. At least it can't hurt anything worth a try.

Alana3

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Post  Chrisk Sun Mar 02, 2014 1:42 pm

Alana3 wrote:Not sure why she couldn't see yeast it's fairly obvious. At any rate should have given you something. Try making a paste with baking soda and applying.for a few.minutes. im recovering from a surgery too I'm in so much pain tonight I cant even sleep. But baking soda should at least alleviate the burn a little. At least it can't hurt anything worth a try.

I'm sorry to hear you're in pain too. I hope by the time I write this you're able to rest at least. Did your surgery go okay? What surgery was it you had done?

As for me, my family doctor said there is no yeast -- that it's not a yeast infection. I'm finding my underwear has yellowish stains, so I thought maybe it's bladder related. But maybe not because I've narrowed down where the intense burning sensation is coming from and it's at the opening to my hooha.

Today I'm drinking lots of fluids, hoping if it's bladder related that will help, and will take extra measures to clean. I do have an occasional sensation of the smallest bits of fluid leakage, but I'm not suffering from incontinence.

Chrisk

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Post  Alana3 Sun Mar 02, 2014 3:00 pm

Maybe bv or something...

Alana3

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Post  Chrisk Mon Mar 03, 2014 3:04 pm

What's bv?
How are you feeling today?

Chrisk

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Post  Guest Mon Mar 03, 2014 5:28 pm

Wow I'm wondering if surgery will work for me. I was diagnosed with severe vulvodynia in 2005 and filed for disability because I can't even walk or sit most days. I'm a production worker in a factory so that was unbearable. I even tried a sit down job and still was on my knees in severe pain, especially after using the bathroom. Still waiting for an appointment with a new Gyn which was canceled due to weather a month ago. It sure would be nice to work and enjoy life again.

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Post  Guest Mon Mar 03, 2014 5:31 pm

Chrisk, bv is bacterial vaginosis, which seems to be a major issue with vulvodynia.

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Post  Alana3 Mon Mar 03, 2014 5:46 pm

The surgery works best if you have localized provoked vestibuldynia and is usually used as a last resort. I'll twll you I never had trouble sitting only sex and direct.contact but who knows. Ask your doc. I suffered a lot with bacteria and yeast after surgery but once things settled down it was fine.

Alana3

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Post  Guest Mon Mar 03, 2014 5:48 pm

Thanks Alana3. Unfortunately mine is unprovoked.

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Post  Alana3 Mon Mar 03, 2014 7:24 pm

Ger that's annoying- you never know you could always ask!

Alana3

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Post  Guest Mon Mar 03, 2014 9:47 pm

Yes you're right. I'm definitely going to ask about this. Thanks!

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Post  Chrisk Wed Mar 05, 2014 11:10 pm

Please forgive me bringing this back to myself.. I'm really having a hard time keeping my spirits up today.

My surgery was two weeks ago yesterday. I went back to work yesterday, and both days so far, I still feel foggy-headed and sluggish. And the strange things my body's experiencing seem to keep changing instead of just clearing up.

Last Thursday I went to my family doctor to have a swab done because I started having a strong odor. (My surgeon was gone for 4 days.) The swab came back negative, but shortly after that appointment, I started having a burning sensation at the entrance to my hooha, and it feels like things aren't exactly settling in place there after I wash -- I feel like a guy adjusting his junk sometimes.  

I'm distressed that new issues seem to crop up two weeks already after surgery. Is that normal?

I don't think I can call the doctor's office one more time for one more thing right now.  

When I went to my surgeon's office to pick up my insurance form yesterday after work, I mentioned the burning sensation to the nurse, and I was told that if I'm not running a fever, not to worry about it.

I'm starting to be depressed because I'm back at work and feeling crappy and it just seems all wrong. I don't mind that I have to put some things in my life on hold for a few more weeks, but I hate that it's painful to sit because of the burning, and that two weeks after surgery I'm still feeling more pain than I did before surgery (I didn't have that much burning sensation before when unprovoked).. and.. that I don't know what's coming next.

Chrisk

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Post  shanabanana999 Fri Mar 07, 2014 6:08 am

I just had the same surgery, on the 28th. I am surprised that your surgeon is so unavailable to you given that this is such a rare surgery to have performed. My doctor would not perform the surgery unless he would be available no matter what for three weeks following the procedure and he gives his personal cell phone! He said that it would be useless for me to go to any other doctor or to the ER because they wouldn't know what they were doing if I needed help. I can call him day or night which has been wonderful because I developed a yeast rash around my anus and the skin was peeling away. I was in so much pain I couldn't move. I cannot imagine you having to go to work and being in this pain and your doctor is not making himself available to you to try and fix whatever is going on. (I am not trying to brag or be rude, I am trying to say that I empathize with your position, I don't know what I would do if my doctor wasn't the way he is!)

Have you had your stitches out yet, or are they supposed to fall out on their own? If you still have some in do you think it could be the stitches that are irritating? (and I believe that there are two layers of stitches, at least that is how mine are. An internal dissolving layer, and an external layer that must be removed) I will be getting mine removed next Wednesday and I cannot wait. I have one that is extremely uncomfortable--painful I would even say.

I am a slow healer just like you--so far my days have consisted of my bed and the couch with a constant ice pack. I also travel as far as the bathroom a few times a day for a sitz bath but I am going stir crazy!

Another thing that my doctor does is before surgery, if you desire, he will ask several of his previous patients to call you so that you can ask them about their healing process and about what to expect. One of the women that I spoke to told me that she did have to have the surgery 3 times--she did say that looking back on it all and knowing what she knows now (that she would have to have 3 surgeries), she would still have made the same decision b/c it has been so life-changing for her.

I hope you are feeling a little better today.

shanabanana999

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Post  Alana3 Fri Mar 07, 2014 2:25 pm

Whos your doc? Sounds like mine!

Alana3

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Post  shanabanana999 Fri Mar 07, 2014 8:48 pm

His name is Dr. John Slocumb. He and his team are awesome! Who is yours?

shanabanana999

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Post  Guest Fri Mar 07, 2014 8:57 pm

Oh my Gosh is he located in Macon Georgia? I'm only 2 hrs from there.

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Post  shanabanana999 Sat Mar 08, 2014 1:15 am

No, he is located in Denver, CO. I think there is a listing of doctors on the national vulvodynia association website I you're looking for a good one in your area. I'll double check that and let you know if I find differently, because I might have my sites mixed up.

shanabanana999

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