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» What's next?
Fri Apr 20, 2018 10:07 am by amyhp

» HELP!! Topical cream?
Mon Apr 16, 2018 5:49 pm by Sad

» Please tell me this can get better
Sun Apr 15, 2018 11:31 am by amf329

» Pressure to have sex.
Sun Apr 15, 2018 2:00 am by Sad

» Vulvodynia and other neurological diseases?
Sat Apr 14, 2018 8:00 pm by wuhujen

» I'M NEW - Do I listen to my gyno who I feel has it wrong?
Sat Apr 14, 2018 7:57 pm by wuhujen

» I wanted to share a resource that has made a huge difference for me
Wed Apr 11, 2018 9:28 pm by amf329

» Loneliness
Wed Apr 11, 2018 11:36 am by sophiarp

» I cured myself 100% of vulvodynia twenty years ago--I hope this helps someone
Fri Apr 06, 2018 4:06 am by Warrior2010

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 …

Comments: 4

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 …

Comments: 3

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

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 …

Comments: 14

Lidocaine with condoms?

Wed Mar 21, 2018 10:44 pm by AEM1

Hi everyone! My doctor just prescribed me a topical lidocaine to administer before sex, but I forgot to ask if it is okay to use with condoms. Has anyone else used this before and know it is safe to use with condoms? Thanks! Very Happy
Unrelated, but I just started Lyrica a few weeks ago...no changes yet, but I'm hopeful something will come out of it. 3 years with vulvodynia and unable to have sex …

Comments: 1

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: 23

Recently Diagnosed which has motivated my research study

Tue Mar 06, 2018 4:54 pm by ebclose2free

Hi everyone,

My name is Eliza Barach and I was diagnosed with vulvodynia in October of 2017. I'm also PhD student at the State University of New York at Albany. I work several professors at SUNY, but one in particular, Dr. Mitch Earleywine researches marijuana and its possible efficacy as an alternative treatment. Our previous examined cannabis and symptoms of PMS/PMDD and found that women …

Comments: 0

MAY HAVE FOUND A CURE- PLEASE READ

Thu Feb 15, 2018 10:04 pm by infinitelywondering

Dear all,

Today has been the day I've been waiting for. The day something FINALLY makes sense.
I've been told countless times that I've got nerve damage or a muscular condition, yet none of the specific treatments have helped me. My GP suggested attacking this from a different angle so referred me to a dermatologist specialist


after having a vestibulectomy with no success, I decided to visit …

Comments: 3

New and desperate for advice

Sat Mar 03, 2018 2:37 pm by srbry

Hi everyone,

I'm new here and was told to find a support group because this is all getting a bit much really...

I lost my virginity when I was 18 and it hurt - that was normal. Loads of women had told me that it hurt so that was fine I didn't question that. I was with the same guy for a couple of months and each time after that it was uncomfortable and not great. I didn't tell him because I …

Comments: 3


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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