Vulvodynia Support
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» Hope to all my suffering ladies
which meds for what? EmptyFri Oct 23, 2020 12:04 am by ringostarr26

» Please tell me this can get better
which meds for what? EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
which meds for what? EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

» How I cured my Vulvodynia!
which meds for what? EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
which meds for what? EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
which meds for what? EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
which meds for what? EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
which meds for what? 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!
which meds for what? 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.

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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 …

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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 …

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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 …

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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 …

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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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which meds for what?

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Post  yoginimom Tue Oct 21, 2014 2:51 am

I have been reading through this forum and finding a lot of threads that mention various medications, but do not list what they are for. Is there a list of meds anywhere on this forum with a description of what they are for? Or matching certain symptoms with certain meds?

My Dr. has not suggested any meds aside from Fluconzole which is the no name for Diflucan, (a yeast treatment).

Can anyone help me with this? I really want to cure this. It's been basically a year of hell for me.

So far i have tried the gynecologist, who refereed me to the internal physio, and put me on fluconozole, which does not help. So far i am having the best luck with lidocane and coconut oil for the pain and burning. But nothing makes it go away completely.

What are your symptoms? What have you tried? What has worked?

Thanks in advance.


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Post  Alana3 Tue Oct 21, 2014 7:23 pm

Medicine doesnt necessarily work with every case. I don't know why they would try diflucan, do you have yeast? I tried everything under the sun for 7 years before I said fuck it (sorry language) and went ahead and got the surgery as a last resort. But I tried Amitriptilin, Gabapentin (both for nerve pain), lidocaine, various forms of antibiotics, herpes drugs (which I dont know why they would even do that but ok), topicals, creams, suppositories, bull shit after bull shit. None of it worked for me. But that doesn't necessarily mean it wouldnt for you. Do you have pain all the time? Or just with sex? Is it nerve or muscles?

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Post  yoginimom Tue Oct 21, 2014 7:37 pm

I think they are trying to rule out yeast. but i've been on diflucan for 3 weeks with no improvement. My symptoms are burning and sometimes stabbing pain in the vulva 24/7. If i try to have sex i'm in much worse pain for a min of 3 days after. So i guess i have unprovoked, as worse with provocation type V. So far i have tried lidocane, and that does help. Cocnut oil and Vit E oil do help as well as vaginal probiotics all give me mild relief. Nothing takes the pain away completely though. It's so frustrating. Sad

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Post  Alana3 Wed Oct 22, 2014 2:41 pm

Yeah you don't have yeast, it would show up on lab work. Stop taking that drug you're going to build resistance to it and it wont work when you need it to. I only had provoked V, but I know of a bunch of people who had results with unprovoked. Drugs like Cymbalta, Amitriptyline, Gabapentin, are all things that could maybe make a difference for you.

When it became awful for me, I made a paste of baking soda and warm water, and left it on for 10-15 minutes. It would take the stinging out. But if you haven't actually tested positive for yeast, don't continue using something that you don't even have. If you did have yeast, your pain would be gone now. Do get tested for ureaplasma and strep B (they will probably tell you only pregnant women have strep B, but that's not true, I tested positive twice for it and have never been prego). It can cause burning, itching, etc. Same with ureaplasma.

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Post  yoginimom Wed Oct 22, 2014 10:30 pm

Thank you Alana,

I have stopped the diflucan and using vit e topically along with coconut oil and lidocae. All of them work to take the edge off, but the lidocae works the best.

Is it normal to have a lot of redness with V? i use a mirror to apply the lidocane and i notice it's always very red in certain areas.

They have said they took swabs for "everything" on three different occasions and it all came back negative, but i will get them to test again specifically with those 2 you mentioned.

can i ask what you did that actually worked for you? Also what are the side effects of the internal botox? I am desperate enough to try anything, but that's always always the wise way to go.

Thanks for taking the time to get back to me.

yoginimom

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Post  yoginimom Tue Oct 28, 2014 3:22 am

Alana3 wrote:Yeah you don't have yeast, it would show up on lab work.  Stop taking that drug you're going to build resistance to it and it wont work when you need it to. I only had provoked V, but I know of a bunch of people who had results with unprovoked.  Drugs like Cymbalta, Amitriptyline, Gabapentin, are all things that could maybe make a difference for you.  

When it became awful for me, I made a paste of baking soda and warm water, and left it on for 10-15 minutes.  It would take the stinging out.  But if you haven't actually tested positive for yeast, don't continue using something that you don't even have. If you did have yeast, your pain would be gone now.  Do get tested for ureaplasma and strep B (they will probably tell you only pregnant women have strep B, but that's not true, I tested positive twice for it and have never been prego).  It can cause burning, itching, etc.  Same with ureaplasma.  

I got the gyno to order the tests. But she's really convinced it's V at this point. She's prescribed gabapentin topical as well as Amitriptyline. i read the side effects of Amitriptyline and it's freaking me out. i'm not sure if i am going to try it or not. Sometimes i feel a lot like a guinea pig.

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Post  Alana3 Tue Oct 28, 2014 7:08 pm

I had it done in a compound and that helped me a lot. No side effects thank god. You can always try it and get off you never know it might work!!!

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Post  yoginimom Wed Oct 29, 2014 2:10 pm

Alana3 wrote:I had it done in a compound and that helped me a lot. No side effects thank god.  You can always try it and get off you never know it might work!!!


Thanks Alana, i had a major flare up from the topical gabapentin. Did you mean that the amitriptyline can be used topically? I may try that next. Some of the side effects listed are freaking me out. I think my next move may be the oral gabapentin.

Can i ask which surgery you did?

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Post  Alana3 Mon Nov 03, 2014 7:43 pm

Yes I used both topically with lidocaine it didn't do anything for me whatsoever. But mine was provoked. I had a vestibulectomy 2 years ago in December best decesion ever, but not to be taken lightly. It's very last resort, and doesn't always work. Though most people I have talked to have said the surgery was the best thing they did (me included). If you have any other questions, let me know Smile

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Post  yoginimom Wed Nov 05, 2014 1:13 am

I have a gut feeling the ami isn't going to work for me. I really really don't want to go on it for nothing with all those side effects. Though it seems to be getting worse by the day and nothing helps. Did you do anything for pain when you were at your worse? I'm starting to seriously consider the surgery option. Though i know it will be horrible. How much pain were you in right after? And do you find you have any dryness issues now? I'm already dry, so i can't imagine losing more, and i am so hyper reactive to anything i doubt i could do something like replens. Did they give you ideas for dryness? Or is it a non issue? Thanks so much for answering!

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Post  Alana3 Wed Nov 05, 2014 8:59 pm

You are going to have to try a lot of stuff before they will do surgery on you- unfortunate but truthful. I tried a million meds, physical therapy, oral, topicals, lidocaine, antibiotics, the list goes on. The surgery wasn't that bad, it hurt to sit for like a week but I went out to lunch 3 days after my surgery and was fine (except I ripped some stitches which honestly probably would have happened anyway and it didn't hurt). Lots and lots of ice is what got me through and rest. That too. You're really tired after surgery. I have absolutely no issues with dryness, but I didn't have it before, so it wasn't an issue or concern or something I really even asked about to be honest. The only thing that was somewhat awful was vomiting right after surgery, the rest was just an annoyance. And it wasn't that painful. I didn't wake up in pain or anything. I just took my painkilelrs exactly when I was suppsoed to and switched to Advil after 2 days or so. It really wasn't that big of a deal and completely 100% worth it.

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Post  Alana3 Wed Nov 05, 2014 9:00 pm

And just to let you know surgery is not recommended for people who have unprovoked vulvodynia.

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Post  sailor_moon Thu Nov 06, 2014 8:11 pm

I get red raw in certain areas. The more itchy and sore I am, the redder my skin flares up.
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Post  yoginimom Mon Nov 10, 2014 6:53 pm

Sailor moon, do you have provoked V? Have you had success with any treatments as of yet? I'm still leery of the antidepressants, but the pain is making me more open minded. :p

I just discovered i also have 'mast cells' in the vulva. Not sure what i am allergic to but antihistimines do help.

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Post  yoginimom Mon Nov 10, 2014 6:56 pm

Alana3 wrote:You are going to have to try a lot of stuff before they will do surgery on you- unfortunate but truthful.  I tried a million meds, physical therapy, oral, topicals, lidocaine, antibiotics, the list goes on.  The surgery wasn't that bad, it hurt to sit for like a week but I went out to lunch 3 days after my surgery and was fine (except I ripped some stitches which honestly probably would have happened anyway and it didn't hurt).  Lots and lots of ice is what got me through and rest.  That too.  You're really tired after surgery.  I have absolutely no issues with dryness, but I didn't have it before, so it wasn't an issue or concern or something I really even asked about to be honest.  The only thing that was somewhat awful was vomiting right after surgery, the rest was just an annoyance.  And it wasn't that painful.  I didn't wake up in pain or anything.  I just took my painkilelrs exactly when I was suppsoed to and switched to Advil after 2 days or so.  It really wasn't that big of a deal and completely 100% worth it.  


It's nice to know the surgery wasn't a nightmare for you. That kind of gives me hope. Smile Though ... good to know that they don't do it with unprovoked V, which is what i have ... so they tell me. So may not even be an option in my case. Did you have any success with managing your symptoms while you waited for surgery?

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Post  sailor_moon Mon Nov 10, 2014 7:22 pm

Unfortunately my V is unprovoked.  I itch almost 24/7 and I burn and get sore too. I have found it gets worse with movement. Exercise is out of the question.
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Post  yoginimom Mon Nov 10, 2014 9:03 pm

sailor_moon wrote:Unfortunately my V is unprovoked.  I itch almost 24/7 and I burn and get sore too. I have found it gets worse with movement. Exercise is out of the question.

Oh OK, that's the same for me. Is your pudendal nerve involved? I know when i get my sacrum adjusted it helpes a lot. But most of the time it's hit and miss for what works and what doesn't.

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Post  sailor_moon Mon Nov 10, 2014 9:38 pm

I have no idea what nerves are involved.  Im under investigation ATM... I have a LOT of hormone problems and suspected endometriosis.  Im on a 3-6 month waiting list to have an operation,  a hystoscopy and laparoscopy,  he is going in to look at all my insides and fixing any problems he can find.
I hope its not nerve related coz on here most people with nerve issues never get fixed. How do you gix nerve lroblems? SadSad
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