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Looking for a friend..... and new problems

Sat Jan 06, 2018 11:38 pm by infinitelywondering

Hi everyone,

I hope you're doing well.

I hate to say this, but I feel beaten down and terribly alone. I had a vestibulectomy surgery about 6 months ago and I was absolutely praying it would work. It didn't.

6 months later and here I am, sitting on my bedroom floor crying my eyes out because I know I'll never be able to have painfree sex. I don't know what to do and just need a friend Sad



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So frustrating!!

Thu Jan 04, 2018 1:15 am by Hannah77

Well I'm back in pain after 7 years of pain free days.
I was diagnosed with vulvodynia when I was 17. I suffered for three years with horrible burning all day, painful sex with my boyfriend and just pure misery Sad I went into a spontaneous remission when I was 20. I'm still not sure how the pain stopped but all the sudden I could go an entire day without thinking of my vagina, sex started to …

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Looking for suggestions or encouragement

Sat Jan 13, 2018 12:10 am by ryn207

Hi there. I'm 25 and have been dealing with this for over a year and a half and I'm really starting to lose hope this will ever stop.

In July of 2016 I had a yeast infection. When Monistat didn't work I went to my gynecologist who prescribed Diflucan. When the itching didn't stop she retested me and found that my yeast infection was gone, but I now had a bacterial infection. After taking the …

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Amitriptyline given for vulvodyina pain

Tue Oct 24, 2017 2:46 pm by katycrawford

Hi there,

After years of being misdiagnosed etc as most women have on this forum I have finally been diagnosed with vulvodynia (yay) and have been given the lowest dose of an antidepressant called Amitriptyline. Has anyone been on this before and has any positive (or negative) news to give me? Im feeling down already and I've only been taking it for a few days, I don't have much hope of it …

Comments: 11

7 years later and life looks bleak :(

Wed Dec 06, 2017 2:50 am by RainyShay77

So 7 years ago I had a case of BV...the antibiotic caused a horrible yeast infection which took 5 months to 'get rid of'. During this time I had allergic reactions to 2 of the yeast infection creams which magnified the pain. Over the past 7 years I've tried multiple rounds of physical therapy (they only slightly helped), chiropractic, nerve blocks, medications to target nerve pain (amitriptyline, …

Comments: 7

Newly diagnosed - and prescribed amitriptyline cream/physio/psychology

Sun Jan 07, 2018 9:38 am by sophiarp

Hi everyone,

I'm so happy to have stumbled across this forum. I have just been diagnosed and am really struggling emotionally. It's nice to find this forum and feel a little less alone.

I've been prescribed amitriptyline cream. Has anyone had success with this? I was happy to have avoided the amitriptyline tablets. I'm also participating in physio and have been told I need to see a psychologist …

Comments: 2

Somebody please help me...

Fri Nov 24, 2017 8:05 am by Andlag

Hey everyone,

since I started being sexually active i often experienced burning in my vagina which was often worse during sex /around the time of my period or when using lubricants. I was never able to use tampons because the one time i tried putting them in it felt like acid was poured on my skin. Fast forward to 2 months ago when I got a UTI and an allergic reaction in my vagina. I thought it …

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Amtriptyline, baclofen, gabapentin cream for provoked vestibuldynia

Mon Nov 20, 2017 8:15 pm by WVR00

Hello,
Has anyone had success with this cream in helping their vulvodynia? How long has it taken to help? I’ve had some success with it, but not completely better. I’ve been on it for a month. I️ was hoping to hear from some ladies who have had major success with this cream. I’m hoping for some encouragement here. This condition is so frustrating. I’m lucky enough to have access to two …

Comments: 1

New diagnosis, any advice whilst I wait for a specialist

Wed Oct 25, 2017 1:47 pm by Julesyjules

Hi,

I'm new here and wanted to ask for some advice whilst I wait to see a specialist nurse.

After urinary problems which lasted 7 weeks, I finally saw a urologist, who on examination discovered significant inflammation and called in a gynaecologist, who diagnosed vestibulitis. They referred me to a nurse who specialises in vulvar skin issues. That was 5 weeks ago, and I'm still waiting for the …

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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!

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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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