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I'm new to this forum and would love some advice! :)

Tue Jun 05, 2018 4:13 am by anikita

Hi lovely gals!

I'm honestly hoping to get any bit of advice anyone might have to offer. I go from bouts of sobbing hysterically in my boyfriend's arms to feeling confident that I can beat this.

I haven't been actually diagnosed with vulvodynia but EVERYTHING under the sun has come back negative. I started having sex 4 years ago after starting Lo Loestrin, with my first and current boyfriend …

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I'M NEW - Do I listen to my gyno who I feel has it wrong?

Fri Mar 09, 2018 6:17 pm by Tunes25

Hello!

I am a 25 year old woman and wanted to share my story here as I feel frustrated by the suggestions of my gyno and am hoping for some advice.

To give the context for this: in September 2016 I moved in with my long term boyfriend after living abroad a year and (nearly) abstaining from sex. Within a few weeks I had got a yeast infection which I treated myself successfully, but then 2 weeks …

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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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What has been helping ME (much less pain over time!!)

Wed May 16, 2018 3:43 am by leoscc

Hello everyone! I vanished for quite some time as my life became consumed by not only this but other daily responsibilities as well. Shortly after my diagnosis, my boyfriend f 3 years left me as he did not want to deal with this. It left me broken for a while but also gave me time to figure out what the heck was going on. So, I will write out a quick list of my symptoms and what helped me.

1. I …

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I cured myself 100% of vulvodynia twenty years ago--I hope this helps someone

Mon Mar 12, 2018 4:33 pm by totallycured

Hi,

Every so often I'm reminded of the constant, persistent, horrible pain I was in two decades ago, and I reach out to try to help others who are suffering. If someone had offered me a solution during that terrible time, I'd have jumped at it. I hope this helps someone.

Yes, I did have terrible vulvodynia. It felt like someone poured acid all over my vulva. My doctor confirmed it and was …

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Condoms Less Painful?

Mon May 07, 2018 3:35 am by stillinpain

I'm just curious, has anyone found using condoms to be less abrasive to the skin than without? I just got off birth control and haven't stretched myself out enough post surgery to try sex yet, but when I do I am wondering how trying it with condoms with affect the sensation. I feel like for me the skin to skin sensation creates pain, not just at my entrance but internally, too, since I also have …

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Will there be an end?

Fri Apr 27, 2018 12:06 am by Krista2828

I go in and out of being okay and not being okay with this condition. I question often why me? I am a problem solver by nature and I feel so defeated that after tons of research and trial and error and doctors and tears that there still is no answer.

I am in my 20's.. it shouldn't be this way.

Id love to know what all has worked! I am willing to try anything to get my life back. I am curious …

Comments: 6

you can be healed so easy and quite fast.

Thu Apr 26, 2018 11:46 pm by pussycat

Hello everyone,
i am new to this forum. I wanted to share my personal "journey" with V with you and to give you a real hope you can be totally healed/recovered from V. Many years ago i was struck with V, it was painful and got worst and worst, eventually i could not sit, could not stand, could not walk, could not swim in a swimming pool anymore. I was becoming bedridden, it frightened …

Comments: 4

Hi Im from Australia :)

Sat Jan 08, 2011 1:08 am by emma

Hi girls... I live in Australia.
I am currently undergoing a new treatment for vulvodynia. Just wondering if anyone else here has tried it. It's Endep in the form of cream to apply directly on the area. I dont know if anyone else has tried this but so far evidently it has had a 50% success rate.
Anyway i feel at a loss. This new treatment is exciting but at the same time i just dont feel like …

Comments: 35


Is (light) bleeding a normal symptom of Vulvodynia?

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Is (light) bleeding a normal symptom of Vulvodynia?

Post  Worriedhusband on Sat Jul 08, 2017 9:07 am

Hi all,

My wife was diagnosed with Vulvodynia approx. a year ago, and we have seen some improvement since, but not much. We have met with three gynecologists, two of them experts on Vulvodynia. She cannot sit or function normally due to tenderness and pain. She is now too tired of it all to actively seek out any new information herself, hence I am asking this question for her.  

Is it normal for this condition to have some light bleeding every now and then (2-3 times times a week)?

The gynecologists say the mucous membrane (right term?) is irritated and red (and therefore the bleeding), but should heal with time. However, if there is bleeding every now and then even after a year, it doesn't seem to heal, right? The only treatment they recommend is amitriptyline, which she do not want to take due to bad experiences with such medications in the past. And we also don't understand how antidepressants will heal the underlying problem that causes the light bleeding. Amitriptyline can help with nerve pain, yes, but has nothing to do with the irritated tissue damage that is causing the bleeding, and probably some of, if not most of, the pain.

So, is irritation down there to the point of light bleeding even a symptom of Vulvodynia? Or is Vulvodynia purely nerve pain/sensitization? And might this actually be something else? Like some skin condition or something? One of the gynecologists mentioned Lichen as a possible alternative diagnosis, but still believed it was a case of typical Vulvodynia, and said antidepressants must be tested as first line of treatment.  

Thankful for any input as we are quite frustrated at this point!

Worriedhusband

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This might help

Post  EverythingIsDifferentNow on Sun Jul 09, 2017 3:57 pm

I've heard parasites can do a world of havoc on any person's body, especially on a women's reproductive organs. Maybe she should try a parasite cleanse or a parasite cleanse tincture (you can get it on Amazon). I say this because I don't think bleeding is normal for vulvodynia or common.

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Re: Is (light) bleeding a normal symptom of Vulvodynia?

Post  mary jane on Sun Jul 09, 2017 4:36 pm

Worriedhusband wrote:Hi all,

My wife was diagnosed with Vulvodynia approx. a year ago, and we have seen some improvement since, but not much. We have met with three gynecologists, two of them experts on Vulvodynia. She cannot sit or function normally due to tenderness and pain. She is now too tired of it all to actively seek out any new information herself, hence I am asking this question for her.  

Is it normal for this condition to have some light bleeding every now and then (2-3 times times a week)?

The gynecologists say the mucous membrane (right term?) is irritated and red (and therefore the bleeding), but should heal with time. However, if there is bleeding every now and then even after a year, it doesn't seem to heal, right? The only treatment they recommend is amitriptyline, which she do not want to take due to bad experiences with such medications in the past. And we also don't understand how antidepressants will heal the underlying problem that causes the light bleeding. Amitriptyline can help with nerve pain, yes, but has nothing to do with the irritated tissue damage that is causing the bleeding, and probably some of, if not most of, the pain.

So, is irritation down there to the point of light bleeding even a symptom of Vulvodynia? Or is Vulvodynia purely nerve pain/sensitization? And might this actually be something else? Like some skin condition or something? One of the gynecologists mentioned Lichen as a possible alternative diagnosis, but still believed it was a case of typical Vulvodynia, and said antidepressants must be tested as first line of treatment.  

Thankful for any input as we are quite frustrated at this point!

does she really want to get better? than she should take the medication and suck it up. Unless she gets life threatening side effects from the Amitriptyline she needs to start taking medication, because there are few other alternative treatments out there. Parasites don't cause vulvodynia, for crying out loud, ignore the user above me. The side effects go away in 2-3 months anyway.

the light bleeding sounds like PCOS, it can go away with time....it could also be HPV related, when did she have her last swab ?

vulvodynia doesn't come with bleeding.

I feel for your wife because doctors are retarded and useless and it can be exhausting having to deal with idiots on a frequent basis.  The irritated tissue.. it's something I have from time to time .. it's hard to say what causes it ..can you try seeing a urogyn instead of a "normal! gyn? Or the clinic in Rochester if you're in US, they are the best I've heard.

I was able to achieve remission from pain using medication ..right now I am controlling the nerve pain very well with medication and lidocaine ointment.

For painful intercourse one can try dilators, it gets the muscles and tissues used to pressure again.

so all the treatments out there: at least 2 3 different medications, lidocaine, pelvic physiotherapy, the dilators, CBT, or sexual sounselling, gabapentin cream, nerve blocks....


Last edited by mary jane on Sun Jul 09, 2017 4:38 pm; edited 1 time in total
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Re: Is (light) bleeding a normal symptom of Vulvodynia?

Post  mary jane on Sun Jul 09, 2017 4:37 pm

Amitriptyline works because pain is an output of the brain, it can, in lucky cases, "reset" the nervous system to stop sending pain messages
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Re: Is (light) bleeding a normal symptom of Vulvodynia?

Post  Worriedhusband on Mon Jul 10, 2017 4:40 pm

Ok, many thanks for the replies and information!

We suspected that bleeding (even light bleeding) isn't a typical symptom of Vulvodynia, and hence that something else might be going on as well. I guess she has nerve pain (Vulvodynia) because she is really sensitive down there, and for that Amitriptyline is probably the best or even only idea. But as said, I think the bleeding indicates that something else must go on in addition and that could probably reinforce the nerve pain. We tried to introduce the idea to the latest gyn, but she kind of scoffed it off and said that Vulvodynia can "cause some irritation, but that tissue irritation should heal with time".

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Re: Is (light) bleeding a normal symptom of Vulvodynia?

Post  Hopeitworks on Fri Aug 04, 2017 12:37 pm

With my experience no bleeding or any type of skin change is not normal. Vulvodynia has no skin symptoms for most. She needs to see a specialist. Ampitripline works a little for nerve pain, but the side effects cause constipation and it will make her tired!

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Mona Lisa Touch

Post  amyhp on Fri Aug 04, 2017 5:21 pm

Your wife should look into the treatment called Mona Lisa Touch. It's a fairly new treatment discovered in Paris and there are active clinical trials being done in the U.S now. They are having good results for women with vulvodynia if done by the right doctor. With all the redness, irritation, and bleeding it sounds like there is a major skin component. The Mona Lisa Touch really helps with those kinds of symptoms. Do some google research on it!

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Re: Is (light) bleeding a normal symptom of Vulvodynia?

Post  Worriedhusband on Fri Sep 01, 2017 8:24 am

Many thanks for the additional replies! Yes, we have also understood that Vulvodynia normally do not come with any obvious skin symptoms, tissue irritation, bleeding etc. Will look into the Mona Lisa Touch treatment, thanks for the tip!

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I can relate

Post  leoscc on Fri Sep 01, 2017 3:48 pm

I can see why your wife is worried about antidepressants due to past experiences. Also, she is so lucky to have a husband so concerned about her position that he joins a support group in attempts to help her! Sadly, I do not have much great advice. I've noticed for myself personally, when I have bad flare ups, taking epsom salt baths help a lot in terms of soothing the aggravated tissue. Light bleeding however is not normal, unless it occurs after sex. I wish you luck!

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Re: Is (light) bleeding a normal symptom of Vulvodynia?

Post  Worriedhusband on Sat Sep 09, 2017 10:01 am

leoscc wrote:I can see why your wife is worried about antidepressants due to past experiences. Also, she is so lucky to have a husband so concerned about her position that he joins a support group in attempts to help her! Sadly, I do not have much great advice. I've noticed for myself personally, when I have bad flare ups, taking epsom salt baths help a lot in terms of soothing the aggravated tissue. Light bleeding however is not normal, unless it occurs after sex. I wish you luck!

Thanks for your reply and epsom salt recommendation! The light bleeding occurs every few days (some drops on the toilet paper ) without any particular reason (such as sex).

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Re: Is (light) bleeding a normal symptom of Vulvodynia?

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