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For women who have Vulvodynia

Posted by on Oct. 26, 2012 at 12:15 PM
  • 11 Replies
I'm not sure that I spelled it right but today at 12 weeks postpartum I was diagnosed with Vulvodynia. After a trauma like childbirth about 30% of women develop this and its when your body makes too many nerves and it causes extreme pain. I was prescribed medication for it that is suppose to kill some of the nerves but the OB said that sometimes it doesnt work and women have pain for the rest of their lives. I was also given a topical numbing cream so that we can have sex (which will be oh so much fun if I cant feel anything right?!) but my SO hates condoms (and he'd have to use one or he will go numb too) so if this medication doesnt work we wont be having sex according to him :-(

Have any women here been diagnosed with this?? Did the medication work?!?
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by on Oct. 26, 2012 at 12:15 PM
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Replies (1-10):
workingmama86
by Ruby Member on Oct. 26, 2012 at 12:16 PM

I have had it for 7 years. 

bear.katten
by on Oct. 26, 2012 at 12:21 PM
Oh god :-( So the medication didnt work for you then? Did the pain decrease at all? Have you had anymore children since then?! Is there any way to manage it??


Quoting workingmama86:

I have had it for 7 years. 


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Gabeybaby0504
by on Oct. 26, 2012 at 12:25 PM
I wonder if i have that. After having my second baby, sex is just not comfortable :(
Of course, her giant chipmunk cheeks didn't help matters down there lol
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workingmama86
by Ruby Member on Oct. 26, 2012 at 12:29 PM

i first got it after my son was born 7 years ago. It was EXCRUTIATING... and back then, it wasn't common, so my ob/gyn had no idea that's what i had. She was stumped when I told her my symptoms. The first thing she did was order a biopsy, OUCH.. And she found out that I just had irritated skin. So she told me to wear only cotton underwear, wash my underwear in allergen free detergent, use mild soap, etc..

I did everything she said, nothing got better. She prescribed me a cream, it didn't help.. then she prescribed me a second cream that was thicker (some kind of estrogen cream), and that worked. Well, it only worked until I stopped using it regularly (i ran out). So I went about 3 or 4 years without approaching the subject again. When i had sex, I used a vibrator, because for some reason, it eases the pain during intercourse... also we use lube (the water soluble kind or something like that?)..

Then I went back to her after being tired of being very sore after sex, and she ordered another biopsy... then I told her about that cream she gave me years before, and she prescribed that to me again... but this time, it didn't help so much. 

So then I went on amitriptyline (the anti-depressant), and i did physical therapy (the therapist stretched my muscles in my vagina, lol) and it got better with that, but not completely.. plus the amitriptyline gave me extreme dry mouth... so I quit taking it. 

Now I am back on the estrogen creme.. it's $160 and I will probably use it for the rest of my life! My only other option at this point is to deal with the pain! :/

Quoting bear.katten:

Oh god :-( So the medication didnt work for you then? Did the pain decrease at all? Have you had anymore children since then?! Is there any way to manage it??


Quoting workingmama86:

I have had it for 7 years. 



Anonymous
by Anonymous 1 on Oct. 26, 2012 at 12:31 PM
Did they suggest a low-oxylate diet as part of your treatment? A calcium citrate supplement? Biofeedback therapy? Amitriptyline?

bear.katten
by on Oct. 26, 2012 at 12:43 PM
The pain is horrid. I cant even use a tampon. The OB said the medication is a type of antidepressant and I'm praying this works! My midwife was baffled at the extreme pain whrn she went to do an exam to give me the Mirena. He aldo said that the medication will make me extremely drowsy but its the only safe one to take while breastfeeding. He did say I could do physical therapy but insurance doesnt cover it and I already have physical therapy 3 times a week for my back and dont have the time or money for it. Thanks for the hint about the vibrator though! I hope we both find some relief soon :-\


Quoting workingmama86:

i first got it after my son was born 7 years ago. It was EXCRUTIATING... and back then, it wasn't common, so my ob/gyn had no idea that's what i had. She was stumped when I told her my symptoms. The first thing she did was order a biopsy, OUCH.. And she found out that I just had irritated skin. So she told me to wear only cotton underwear, wash my underwear in allergen free detergent, use mild soap, etc..

I did everything she said, nothing got better. She prescribed me a cream, it didn't help.. then she prescribed me a second cream that was thicker (some kind of estrogen cream), and that worked. Well, it only worked until I stopped using it regularly (i ran out). So I went about 3 or 4 years without approaching the subject again. When i had sex, I used a vibrator, because for some reason, it eases the pain during intercourse... also we use lube (the water soluble kind or something like that?)..

Then I went back to her after being tired of being very sore after sex, and she ordered another biopsy... then I told her about that cream she gave me years before, and she prescribed that to me again... but this time, it didn't help so much. 

So then I went on amitriptyline (the anti-depressant), and i did physical therapy (the therapist stretched my muscles in my vagina, lol) and it got better with that, but not completely.. plus the amitriptyline gave me extreme dry mouth... so I quit taking it. 

Now I am back on the estrogen creme.. it's $160 and I will probably use it for the rest of my life! My only other option at this point is to deal with the pain! :/


Quoting bear.katten:

Oh god :-( So the medication didnt work for you then? Did the pain decrease at all? Have you had anymore children since then?! Is there any way to manage it??





Quoting workingmama86:

I have had it for 7 years. 





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bear.katten
by on Oct. 26, 2012 at 12:46 PM
No just the medication and he said I could do physical therapy but I would have to fully pay for it and I dont have the money for it unfortunately. I am breastfeeding so I have to be careful with what I take for medication.


Quoting Anonymous:

Did they suggest a low-oxylate diet as part of your treatment? A calcium citrate supplement? Biofeedback therapy? Amitriptyline?




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bear.katten
by on Oct. 26, 2012 at 5:28 PM
Bump..
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Joolsbl
by on Dec. 3, 2012 at 9:23 AM


My problem about vulvodynia started with a simple bartholinitis after childbirth.

One year and a half ago, I went to a hospital with a 1,2 x 1,2 inch bartholin gland ( the right one) and 100ºF of fever, so it was drained there after apply clorethilo. The intervention gaves me a lot of pain but the ginecologist told me that was a usual treatment of the bartholinitis, and in fact she prescripted antibiothics to take to not appear another infection again. But after a month, the right Bartholin gland was almost as big as it was before the first treatment so I went again to the hospital hoping that was the last visit...

In the second time they drained again, and after a month they made me a marsupialization. With the marsupialization appeared two hematoma inside the gland and one big granuloma so I went to another surgery to extirpate it, resulting in a very painfull Vulvodynia.

The gine gave me a lot of medication, drugs to manage the pain, but doesnt work at all so now Im without medication but my gine send me to a pain unit, so im still there having a lot of injections and going to physical therapy... 

My life obviusly changed, and I dont see the day that im going to be okay again...


frankiesma530
by Platinum Member on Dec. 3, 2012 at 9:25 AM

 Wow I've never heard of it before this post....I hope you find something that helps.

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