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» Anyone been to see Dr.Claire Bailey in Birmingham?
Tue Aug 15, 2017 6:36 pm by Kezz

» Recently Diagnosed.... Help!
Tue Aug 15, 2017 2:57 pm by amyhp

» Vestibulectomy
Sun Aug 13, 2017 9:54 am by infinitelywondering

» Discomfort from my own liquids
Sun Aug 13, 2017 4:27 am by Hopeitworks

» Anyone else have burning on the front of thighs?
Sun Aug 13, 2017 2:20 am by Hopeitworks

» Partial Vestibulectomy
Sun Aug 13, 2017 1:38 am by infinitelywondering

» Anyone being treated by Drexel University???
Sat Aug 12, 2017 8:50 pm by Hopeitworks

» Post Vestibulectomy Pain !!!
Sat Aug 12, 2017 8:00 pm by sj17

» Pain management - what works for me
Sat Aug 12, 2017 9:58 am by sj17

Partial Vestibulectomy

Mon Jul 31, 2017 6:44 pm by JGD13

Hi all i am new here.
I had a partial vestibulectomy 21/7 for my provoked vulvodynia.
After a painful few days and feeling quite uncomfortable it seemed to get better. 1 week after i noticed some white stuff and gloopy discharge, it wasnt smelly or itchy but i got a check up at the gp surgery and the doctor said the stitches looked fine and i could just have a touch of thrush. He said this is …

Comments: 4

New w/ Secondary Provoked Vestibuldynia

Wed Apr 26, 2017 11:46 pm by Birdy

Hi everyone,

I'm here because I'm pretty sure I have secondary provoked vestibuldynia, even though my gyno is still "optimistic" it is not.  My problem started six months ago when I got my second UTI in as many months (after going 25 years of life without one) and then ended up with a bad yeast infection (also my first one ever) thanks to the antibiotics.  Ever since the yeast …

Comments: 3

Anyone from the PNW?

Sat Aug 05, 2017 7:54 am by jungleclover

I'm located near Portland and I would be really cool to actually meet someone with this issue. I think my roommate in college technically had this problem. She had an overgrown hymen removed and can't deal with penetration as a result. But she is gay so it seems like it hasn't been a huge problem for her (although we didn't talk about it much so there was possibly more to it than she let on). …

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Constant pain, I want to die.

Fri Jun 02, 2017 4:29 am by Meggiemay

I posted on here a few years ago but my symptoms went away with the inflammation. I didn't get so lucky this time.

For over three months, i've had terrible rawness, burning, soreness in the urethral/vestibule area and pressure/hypersensitivity in the clitoral area. I've also had some lower abdominal pressure and burning on my butt. I can barely walk! My gyno hasn't been much help. I'm on …

Comments: 22

Newbie to the site

Sun Jul 30, 2017 12:16 am by Ksa

Hello. Thank you for this wonderful site. I'm currently under the care of a dr in Phoenix that specializes in vaginal disorders. I will probably be on a suppository of estridol the rest of my life and I am currently on medications for a rare form of vaginitis that's pretty unheard of for my age. My vagina literally hates me. I've struggled with vulvadynia for 20 years, the duration of my …

Comments: 1

New to the site and just had a vestibulectomy

Fri Aug 04, 2017 12:19 am by Hopeitworks

Hello Everyone,

I have been suffering from vulvodynia for years! So I decided to go ahead and have vestibulectomy on July 28, 2017. I really wished I would of found this site before I went through with the surgery. Maybe I would have been more prepared to deal with recovering. I just need someone to talk and I dont mind hearing your story.

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Post Vestibulectomy

Thu Aug 03, 2017 6:15 pm by infinitelywondering

Heya,

I had my vestibulectomy (full) about a day and a half ago. I was very sick and poorly just after the op and experienced intense pain down there Sad

However, today I came home and have done the following things:

-washed with warm water
-applied manuka honey to the area
-ensured I wash at least 3 times a day and dab the area dry gently
-use frozen peas to stop the swelling

As of now I am …

Comments: 0

can anyone recommend a good dermatologist in LA?

Thu Jul 27, 2017 4:17 pm by saffron

Hi, I am wondering if anyone knows a vulvar dermatologist in Los Angeles? My problems seem to be external, but I'm having trouble finding a knowledgable doctor. My current dermatologist is pretty cosmetic based and I'm afraid all the products he prescribed actually made my situation so much worse!

I know there a few drs in Orange County/San Diego, but was hoping to stay local as even …

Comments: 3

Vulvodynia and IVF? Anyone done this? What does it do to the vulvadynia?

Sun Jul 30, 2017 1:03 am by Carolyn4

Hi everyone,

I have had vulvodynia since age 27--I am now 43 and it has been in pretty good remission.  I control it with acupuncture and herbs, and some cranial sacral therapy.  I have a 5 year old, had a pretty uneventful pregnancy which ended in a c-section.  My VV worsened after that, and I have worked hard to get it back under control (it took over a year to get it back into pretty good …

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Next Step: Botox

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Next Step: Botox

Post  Husband on Mon Aug 30, 2010 8:13 am

After testing of many different creams and treatments the following helps my wife:

- Amitryptelin 25 mg once per day 2 hours before sleeping time. Any kind of side problems disappeared after 6 weeks.
-Neocutis biorestorativ cream. This is no “miracle top medicine” but there seems to be an effect.
-use of vaginal electro stimulation (tens equipment bought from Amazon for about 60€ and pelvic floor gymnastic (Epi-No. application)

Compared with the pain before, the actual level went down to a 10%.
However “normal” sex still caused pain, so the next step is a Botox treatment. This will be done in 4 weeks. We are in contact with a woman who lost any pain for 3 month without any side effects. This is in line with a few studies I found in the internet.

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Re: Next Step: Botox

Post  jules on Mon Aug 30, 2010 11:12 pm

Let us know how the Botox works. I may try it if it is helpful for your wife.

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Re: Next Step: Botox

Post  Husband on Tue Aug 31, 2010 1:11 pm

Hi Jwajules,
I read in one of your post, that you seem to have the same problem as my wife. Due to the not only local pain, surgery is impossible. This could also lead to a problem with Botox. However, I will keep you informed.
One other thing: Do you still take Lyrica and Gabapentin? As fare as I know both are similar from the chemical point of view. Lyrica did not help my wife; so for this reason the doctor recommended to try Amitriptylin first in stead of Gabapentin. Successful so far, but also with bad days. So I wonder, if a combination of those both different would lead to an improvement.

Takes anyone else Amitriptylin and Gabapentin?

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Re: Next Step: Botox

Post  Sebby (Admin) on Tue Aug 31, 2010 6:39 pm


Firstly welcome Husband to our forums! Im so pleased to now have 2 male members!

I have heard about the Botox theory so definitely let us know how it helps your wife!

I cant go on Amitriptyline as I am already on Ciprimil for painc attaks but Im finking of cutting down on the Cit and seeing how I go in case I need to use Ami in future.

Pain clinic and Gynea are trying nerve blocks first as meds are a bit risky for me due to my mental health history.

I will look up that cream you have suggested.

Also my mum has a nerve pain machine she is gonna lend to me..you put in on spine tho..I will see if it helps it works different to a normal tens, i will see if it helps?

Let us no how your wife's machine works! if it does then i will deff buy it!

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Re: Next Step: Botox

Post  Sarah001 on Tue Aug 31, 2010 7:35 pm

I'm on Ami and when I go to my next appointment at the hospital if that isn't enough they plan to add Gabapentin too. They can both be taken together but of course each individual is different regarding side effects and how effective they are. Has your wife had her pelvic floor resting tone checked by a professional? The botox jabs are usually used after pelvic floor retraining (with a biofeedback machine and someone who knows how to interpret it) if pelvic floor work hasn't worked enough. Personally I like to leave invasive procedures like injections into the vulva (ouch!) until I've tried less invasive techniques. I've also seen lots of posts from women who had botox to the area and it made things worse which of course means they stay worse for the 6-9 months the botox lasts. The posts I found were on Dr Glazer's website in the lengthy guestbooks, it takes some trawling through them but there's lots of personal experiences in there.
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Re: Next Step: Botox

Post  jules on Wed Sep 01, 2010 1:25 am

Hey husband, great to have you on board. I do take both Lyrica and Gabepentin (Neurontin). I was initially put on Gabepentin..starting at 300 mgs...all the way to 3000 mgs. that cut my pain by about 40% Then i went to a pain clinic..after two spinal blocks that did not help w/ pain, the doctor added Lyrica to my neurontin (i'm also on paxil for depression and trazadone for sleep). The Lyrica helped a lot. I am on 150 mgs of Lyrica and now down to 1800 mgs of neurontin. my doc and i talked about tapering off of the Neurontin..however, when i tried recently, i had a flare up. Currently, i have had very bad burning pain for about 3 days. I can't say how it started...it wasn't working out at the gym or sex (two likely suspects)..I am sitting a lot (on my silly cushion). The doc did say i could go all the way to 300 mgs of LYrica. I actually really like Lyrica. But..here i am again w/ another flare up. Also, i need to get back to the pelvic pain specialists for my physical therapy. the site was too far away. as far as i understand, i need to strengthen my core muscles. As for the botox, I don't see it as invasive, as tiny little needles are used. Botox typically lasts 3-6 months. I have had Botox on my forehead and for me my body gets rid of it w/in about a month. however, i would be leery of making the area worse. i had not heard that part. I am always willing to do what it takes to make pain go away. i take Vicodin for pain throughout the day. Right now...i am 'ON FIRE' down under. As for Amitriptiline, i tried it years ago for headaches. I hated it. I felt like i was in a dream for two weeks, then i went off of it. I do know that these neurological meds can help for awhile and then they stop working. you have to try something else or increase the does. Damn Vulvodynia.

Help everyone...what to do...damn it! I shouldn't have bragged about being in such great shape pain wise.

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Re: Next Step: Botox

Post  Husband on Wed Sep 01, 2010 8:13 am

The tens machine is called Promed 352410 emt-4 including a kind vaginal “dildo”. Additionally she is using “EPI No”. This is a small rubber-balloon with a pressure measurement clock. This is to build up and to relax pelvic muscles. Hard to say, if this really leads to an improvement. I think the effect of Amitryptilin is much stronger.
Furthermore, during the lower pain phases, she is not performing this training on a regular basis. I stopped asking her to do this every day, because she offered me a try :-)

Botox treatment is in Germany very rare. My first fear was, that this could paralyze and finally causing incontinence. But as Botox is used meanwhile for treatment of incontinence, this should not be a problem. The doctor told us, that in former times the treatment did not always work. Today in those cases, up to two further sessions with a slight increase of doses leads- in his experiences-always to 2-4 month success.
The treatment as such should not cause too much pain, because of very small needles. Appointment is end of September- we will see.

Your experience with a combination of Amitryptilin / Lyrica / Gabapentin seems to be an option and last but not least also from the mental point of view. Botox was for my wife something like the last chance and fearing the disappointment if this would not work, makes it difficult to decide to go for.

P.S I hope you always get the sense I am trying to express, I can only use my school English.


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Re: Next Step: Botox

Post  jules on Thu Sep 02, 2010 2:08 am

Actually, your "school" english is very good. Much better than my German...Ha ha. i can say swimming pool, good-bye, good day, out with you and how much does this cost in German, but i can't spell them in you language. ha ha..i lived in Germany for 2 months many years ago (20 plus). At any rate, i would go for the botox. i believe in trying everything. no one here (USA) has offered it to me as an option. I do know a nearby city doc was doing a research study on treating Vulvodynia with botox. i do not know what the results of the study were.

i am willing to do whatever it takes to make the pain go away. botox does leave the body as some point. give it a shot. i did the two spinal blocks which were quite unpleasant. i was willing to do what it takes. i might go back for another spinal block in the Pudendal nerve if i don't get relief. bad four days in a row.

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Re: Next Step: Botox

Post  Husband on Thu Sep 02, 2010 7:31 am

O.K you are not located in Europe, now I can stop wondering, why you are posting in the middle of the night:-). To find a doctor who is willing to inject one of the strongest poison in this sensitive area seems to be difficult all over the word. I am not sure, if it is possible to upload a document in this forum, but I have got here a small dermatologic study about the application of Botox. A woman, we are in contact with, went with this study to a doctor who is using Botox for cosmetic reasons, to remove eye winkles and so on. He made his own small research and finally injected “left over” Botox exactly as described in this paper. She was fine for 4 month without side effects. Furthermore she reported no need for any other drug (after continuously reduction). Then the pain came back and she had to repeat this.
After the advice from Sahra – thanks for this- I looked yesterday on Dr. Glazers guestbook. Indeed there is also a woman who reported no benefit, but a other one received 50 injections. Hard to believe, however she must have generalized Vulvodynia and she was happy after this treatment. This makes me really hopeful and we are looking forward to the end of September.

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Re: Next Step: Botox

Post  Sarah001 on Thu Sep 02, 2010 11:22 am

It does depend on the individual and I think it's great we're all trying different things out, funnily enough for the UK "merry go nowhere NHS" a nurse talked about botox with me on my very first appointment at the GU clinic but it's something I personally wouldn't do unless it was a last resort. I'd have no qualms about having it in my face, I even asked my dentist last time I was in about it (he said I didn't have any wrinkles on my forehead or round my eyes bless him, I worry about his eyesight!!) but I'd be wary about having any sort of injections into such a delicate area as the vulva especially since the nerves are already super sensitive. Each to their own though.
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Re: Next Step: Botox

Post  jules on Fri Sep 03, 2010 4:54 am

Not up in the middle night too often. It seems for the most part, i am one of the few American's regularly writing. I have read and seen studies on Botox. I do believe you can upload articles. I don't know how, but the administrator..Sebby would. Please let us know how it all goes.

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Re: Next Step: Botox

Post  Tammy on Sun Sep 05, 2010 3:55 am

My daughter has tried both Amitriptylin and Gabapentin. Niether one touched the pain. No help. Ami. made her a zombie and with the Gab. we saw signs of depression. Very scarey! Sad Made her Dad and I so sad for her! Next step is a Neurologist and hopefully a nerve block.
Good luck!
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Re: Next Step: Botox

Post  jules on Sun Sep 05, 2010 4:57 pm

Lyrica significantly reduced my pain. Good luck w/ the block.

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Re: Next Step: Botox

Post  Tammy on Mon Sep 06, 2010 3:51 am

Thank-you!

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Re: Next Step: Botox

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