Vulvodynia Support
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» Hope to all my suffering ladies
It's all in my head.... you'll never guess why!  EmptyFri Oct 23, 2020 12:04 am by ringostarr26

» Please tell me this can get better
It's all in my head.... you'll never guess why!  EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
It's all in my head.... you'll never guess why!  EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

» How I cured my Vulvodynia!
It's all in my head.... you'll never guess why!  EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
It's all in my head.... you'll never guess why!  EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
It's all in my head.... you'll never guess why!  EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
It's all in my head.... you'll never guess why!  EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
It's all in my head.... you'll never guess 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!
It's all in my head.... you'll never guess 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- …

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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 …

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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It's all in my head.... you'll never guess why!

+5
tinkerbelle2
Sarah001
Alana3
zarli
EviE°Bee
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Post  EviE°Bee Wed Oct 16, 2013 2:25 am

I am sooooo pissed and livid. Im baring part of my soul with this....

Had a gyno appt today and he examined me something fierce. It was so painful, tears and all.

Afterwards, I couldn't sit properly. He said he wanted to ask me a couple of questions to aide in him properly diagnosing me. He said they could get unplesant. I understood. Anything to get proper treatment.
How old were you when you lost your virginity (18)

why? (Why what?)

Why did you wait so long? (Because me and my bf broke up because I relocated and we ended up back together)

Have you ever had an STD? (No.)

Any pregnancies? (No :-\ )

Why not? (You diagnosed me with polycystic ovarian syndrome a few years ago which is why I didnt get periods regularly and I wasn't really ready to have babies yet)

Did sex always hurt, or did you have any problems with pain when you were younger? (No, just lack of regular periods)

Were you ever molested? (Uh...yea, I was)

How old were you? ( i think i was 6-7 years old)

Who was it? ( my biological father)

How long did it go on? (It happened once)

What did he do? (I remember touching but nothing further. I never really saw him. He and my mothet separated before I was born due to alcohol and drug abuse.)

You would stay with him? ( No, i would go visit my grandma and he would be there once in a while. What does this have to do with the pain im feeling?)

You say these things so casually, I think your pain is psychosomatic. (What?)

I don't think you have VV, you have an infection which has caused this pain. But its not VV. (Casually? You said for me to answer your questions and now your saying its all in my head because of molestation?)

You could lose a little weight, too. (If this were psychosomatic which it's not but if it were, why now? Why would it effect me now? Why not when I started having sex?)

You dont have to be upset- ( are you kidding me? Im offended!)

He gave me 900mg of Gaba and more diflucan ( he said diflucan wont help but he gave it anyway) and wants to see me in 3 months.

Im..... i can't get over it. Opinions please.

EviE°Bee

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Post  zarli Wed Oct 16, 2013 4:08 am

OMG !!!! I can't believe him........I would be so angry too!!! You poor girl I don't know what else to say at this moment but gosh that's un acceptable from any one let alone a Doctor....My heart goes out to you xxxxoooo

zarli

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Post  Alana3 Wed Oct 16, 2013 10:22 am

I don't understand why he wouls give you a drug that wouldn't work... but second he might have a slight point although he went about it the wrong way. There is evidence that it can be in your head because youre expecting thr pain. I'm not siding with him just simply stating I've read stuff that says after an experience like yours you could react that way. Maybe someone dod.something similar to your dad and you subconsciously remembered it. The brain works in weird ways... and I'm not saying you're crazy just that something bad did happen to you and maybe your subconsciously remembering... don't get mad trying to help...

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Post  EviE°Bee Wed Oct 16, 2013 2:34 pm

I was reading articles on it last night, I know its possible but I highly doubt this is my case. If it were a problem sexually then it would have come out when I started engaging in sex, not 12 years later. I had an appt with a shrink a couple years ago from anxiety (bladder problems) and I told her exactly what I told the dr. She didnt mention any surpression or any abnormalities regarding that subject. Either way I would have to see a shrink for it to exclude the possibility.

Thanks so much for the xxxoooo's Zarli, muah!

I'm not mad Alana :'( i want honesty. The situation just sucks.

EviE°Bee

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Post  Alana3 Wed Oct 16, 2013 2:41 pm

New doctor... move on dont take a med for no reason when you do need it it won't work..

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Post  Sarah001 Wed Oct 16, 2013 4:38 pm

He's a bit of a prick because he didn't actually listen to your replies properly either, as you said if it was to do with your childhood experience it would have surfaced earlier. If it was in anticipation of pain it would likely be muscular so still physical. I don't think it matters if you take the diflucan or not, it won't hurt anything and at least he wasn't stupid enough to give you the topical versions so that's something! I've seen doctors like him before for my joints and I think they have a theory and want to make it fit when it doesn't so go at it quite aggressively and end up offending. I'm not sure where you are but if you're in the UK you can make a complaint about him and ask to see someone else. If you're elsewhere I believe the options to move doctor are much easier than here. Some doctors really believe they are so much better than the rest of the population but they are just providing a service the same as other occupations and as with other occupations if they fuck up or offend they should be reported, we wouldn't get away with it in our jobs would we?

The Gabapentin is worth a try though and your usual doctor could increase the dose for you without the need to see this guy, don't let one silly "man" put you off pursuing treatment though. x
Sarah001
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Post  tinkerbelle2 Thu Oct 17, 2013 10:18 am

Evie, he sounds like an inconsiderate, unprofessional arse!

I am so sorry to hear of the experience you had as a child. It is nice that you feel able to speak openly to us about it. I really don't think that it can be in your head if you are feeling actual pain, maybe it could contribute. I can understand the whole learning to expect pain thing. I don't know a lot about biology and anatomy but I really think there must be something going on.

Also I don't see how weight could affect it either.

Try and find a different doctor sweetie and don't give up! Xxxxx
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Post  Kathy100 Thu Oct 17, 2013 11:02 am

Evie,

I had a similar set of questions from my GP & pain specialist (even though I'd had 20 years of problem, pain free sex) and told her I'd never suffered any abuse - she then wanted to put it down to the fact I'd split up with my partner - even though none of the timings matched up. They just seem too keen to label it as all in your head. I've subsequently found that mine is due to a mis-aligned pelvis, coccyx - so all my pelvis floor muscles were completely knotted up - real physical reasons. I agree that your muscles can tense to some extent if they are expecting pain.

I'd change your doctor (no need to put up with all that crap on top of everything else). The thing that's helped me the most is physio (and now pilates) to relax and retrain all my muscles.

Good luck, keep going - it takes time but you'll start to get there xx

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Post  EviE°Bee Thu Oct 17, 2013 7:51 pm

Thanks so much for the support and advice ladies.

This is a serious subject and accusation and its something I should rule out regardless. I know my pain is real and I believe it's hormone related. My periods regulated and this VV flare started. Its been 7 months. I'm trying to get a referral to a psychologist which may take months.

His examination set me back big time, im still sore and my urethra has been acting up. I have developed a type of phobia, I get worried about anything that can possibly increase my pain. Soaps, pants, fabrics, pads, touching, my diet, uuugghhh its so frustrating!

Ill keep updating regarding this issue. Im sure im not the only one out there. Molestation or rape is something that should never happen and unfortunately it happens regularly, an everyday tragedy. It is easy for physicians to pin pain to a tragety, it makes sense depending on the facts and different variables, but it could also be a lazy way to misdiagnose someone.

We'll see what happens. Muah! Thanx my babes.

EviE°Bee

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Post  zarli Fri Oct 18, 2013 9:48 am

Hi Evie
I believe living with enormous stress (I don't wish to go into details) has affected my nervous system and I guess my brain has had something to do with vulvodynia, I hate the term" its all in your head" Ive heard that way too much in my life. I too live with so much anxiety about the triggers that cause the pain to be unbearable and the thought of my medication not working any more. I am working really hard on my positive thoughts and not letting my anxiety rule my brain. I have lived with anxiety all my life , lets just say some of my life experiences have been like yours.... The brain is so powerful I have learn't never to under estimate it. Find a new doctor sweetie who will help you move onto better days. You are never alone you have all these amazing women on this forum xxoo

zarli

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Post  EviE°Bee Mon Oct 21, 2013 3:17 am

Thanks so much Zarli. I don't know anyone else who has VV but I don't see how it could not be traumatic. I get more positive the more pain free days I have, but when the pain lasts for more then a week or two then I feel like I am doomed to feel this way all my life then I dwell on all the things I am unable to do, perfumes I cannot wear, drinks I can't drink, sex I cannot have...ugh! But I understand what your saying Z. Our minds are our biggest enemies majority of the time.

Thanks for your story.
Muah!

Evie Bee

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Post  burningturning Mon Oct 21, 2013 11:02 am

Evie, so sorry for you Sad your dr is such a misfortune.
I really hate this "psychological" approach of doctors! Nowadays, almost every doctor tend to diagnose "it's psychological" to conditions they don't understand! It's the easiest way for them.


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Post  EviE°Bee Mon Oct 21, 2013 3:46 pm

I agree. Dr's will take the psychological route with those that show no physical signs of a medical condition. I look completely normal, no redness, no abnormal attributes.

I think it depends on medical history, facts and other circumstances. Either way, regardless if I don't like that assh%#e's approach or how unprofessional he was, since it was brought up I have no choice but to go see a psychologist to rule out that 1% chance. I say 1% because I am unconvinced of these accusations.

Thanks B, muah.

Evie Bee

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Post  lavrose Tue Oct 22, 2013 1:21 pm

You prolly have a bacterial infection. mant times BV does not get cured easily for many people. The standard drugs for BV is Flagyl (Oral Metronizidal) and Vaginal Clindamycin cream and flagyl cream. many times it takes a few rounds to get rid of a problem, plus more yeast treatments, in addition, (kills off the good bacteria in your system) sometimes they dont work at all, and women are reduced to the infamous hydrogen peroxide douche.

(which doesnt work)

However. many women are talking about Avelox on the BV forums. Its a strong, and new controvercial antibiotic. some people claim to experience dangerous side effects, but many women claim to get success with NO REOCCURANCE of their vaginal problems after using it with no side effects. Please research. The hurtle is getting your doctor to prescribe.

God Bless keep strong in the fight.

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Post  Alana3 Tue Oct 22, 2013 1:26 pm

I'm sorry but where did anyone say anything about BV?

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Post  Elc88 Tue Oct 22, 2013 10:21 pm

Wow, sorry to hear your story. I have heard it suggested that molestation can lead to vulval pain in later life, but I don't think your doctor can diagnose that after so few questions! I get really confused by all the conflicting diagnoses too. When I was first told I had vulvodynia, they said it was simply a sign there was pain there once, but when the cause went away, the signals in my brain got confused and continued to think there was pain there. While I explain my 'skin condition on my thigh' to people, I always say I have a psychosomatic illness for ease, but when I asked the Dr if this is what it was, she said it's definitely not psychosomatic. Have they changed their mind again?

He doesn't sound like a very approachable doctor, if he was, he would have broached the subject a little more subtly than that, it sounds really horrible! Gabapentin is worth a try though, it was one of the medicines they tried to put me on when they thought I had true vulvodynia. It belongs to the anti-depressant family, but in the quantities you will be taking, it's a mild painkiller instead.

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Post  EviE°Bee Thu Oct 24, 2013 10:13 pm

Ha ha! Your funny Alana. Direct and to the point, love it!

I get what you mean El, it seems like they are pullin ideas out of a hat or somethin. I know Dr's don't have magic wands to cure us instantly but its our job to make dr's aware of what is going on with our bodies. That challenge has negative results majority of the time.
Example: endometriosis, when first discovered, dr's were baffled and women had to undergo different treatments (experiments) like us with VV. Today, endometriosis is a "known" complication and Dr's have figured out the best treatments for it. All I can hope for is a cure, if not then cut it off.

Evie Bee.

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Post  lavrose Sat Oct 26, 2013 1:25 pm

Hey Alana. I realize not all women suffering from V have an infection.

Im saying SOME womens problem did turn out to be an infection after all. So its nice to get all perspectives. Not everyone is the same, and V is still a mystery condition with no cure yet, so its nice to explore all possibilities and get everyones side of the story.

to me, they symptoms of V mimic an infection, (burning, itching, pain during intercourse, dryness, or unusual discharge).  Also, the condition seems to spring up suddenly during womens sexually active lives, (they arent born with it, SUM not ALL).

Once again i will say, not everyone V is caused by the same thing. For some people its a physical, muscle problem, for some, something else??

Everytime I was on antibioitics, or did my essential oil suppositories, Id feel normal again, and/or better for a little while, so my problem is prolly some kind if an infection. In my opinion.

And yes Ive been tested for STDS many times.
Also, these women many times have a history of re-occuring, yeast or bacterial infections in the vagina. it stand to reason it might be an indomitable infection of some kind, they are many organisms out there that can cause an imbalance,and the vagina is a wet warm dark place, so it stands to reason.

i think being so dead set negative on what this problem might possibly be is pretty dangerous, since we are all trying to find a cure. Im glad your cure for you is working, and you are feeling so much better.

However, antibiotic resistance is an issue. Doctors not wanting to prescribe long term, or different antibiotics is also an issue. Yeast, and diet are an issue. There are many possibilities.
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Post  lavrose Sat Oct 26, 2013 1:30 pm

also, BV can be hard to cure, if you go on the health boards, or just google "my chronic BV infection that wont go away" women struggle just to cure that infection, its very common. Metronizidal resistance is an issue, as women ended up trying some other kind of antibiotic like Tindamax, Clindamycin (orally) which can cause c-diff, its a dangerous antiiotic not commonly prescribed for this reason, and Avelox.
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Post  Alana3 Sat Oct 26, 2013 2:09 pm

I never said it wasnt relax I have had it all bv yeast reoccurring bull shit I just wasnt sure where someone had said they had that or you were just saying its possible... bv is a bitch I got it from being over medicated for no reason because my doc.had no idea what he was doing. Shit happens. Im honestly not sure how im negative when I asked where.some one mentioned bv because it wasn't mentioned ever. I'm sure everyone has been tested for infection I'd hope so anyway if its that easy of a fix great I'm happy but I either didnt read the same thing as you or I misunderstood what you were trying to say.

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Post  EviE°Bee Sat Nov 02, 2013 8:54 am

Hey my babes, update here...

Saw psychologist today. Learned some useful info.

First off, she concluded that my "condition" is not psychosomatic. She believes that it is an actual physical condition, not necessarily VV which is in her words "a very rare condition."

She also informed me that there was a way to prove if pain is in fact psychosomatic pain. There are 2 hormones (Of course I did not write the names of these hormones down Embarassed) that cause muscles to contract and cause pain but only if your brain/body is producing a very high amount of these hormones.

As far as you ladies, all information is welcomed and encouraged. It is easy to feel negative about our V's.

Thanks,
Evie bee

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Post  zarli Sat Nov 02, 2013 9:18 am

Thanks for the update Evie, very similar to what my psychologist said to me. Although I believe our brains can have a lot to do with what we believe we may or may not have. I have had a life time of experience with anxiety and panic attacks etc. I have been through a lot of unnecessary health issues due to my negative approach to fear of illness etc. Vulvodynia for me I believe came from psychological reasons. I believe anxiety in its extreme and I mean extreme has caused problems in my nervous system. We all have our own set of Vulvodynia problems some are very unique and some are more common. I hope you are feeling better on your journey to better health xxxx

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Post  EviE°Bee Sat Nov 02, 2013 7:49 pm

I understand, Z

I was speaking in terms of my situation; molestation or some kind of sexual assault.

Stress/anxiety/depression can definitely cause flare-ups or possibly cause VV. At this point, there is no evidence that everyone's VV is caused by the same culprit.

Either way, the psychologist did not specify nor hint that my pain was caused by anxiey or depression.

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Post  Alana3 Sat Nov 02, 2013 7:59 pm

Yeah mine was a documented nerve condition. Tho it did hurt when I started having sex cuz I was expecting pain that never happened. When I relaxed it was fine so I think it can be medical and psychological

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