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Looking for a friend IRL; LA/OC

Tue Jul 18, 2017 2:51 am by crypticcalico

Hello!

I am hoping to find a friend in the LA/OC area that I can meet up with in person. I live in Long Beach, California and I am willing to drive a bit to meet. The only person that I've told about this is my doctor(s) and someone who couldn't wrap their brain around it. It would be nice to be able to talk to someone else who understands.

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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 …

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Owner of vulvodyniSuppoet.com

Wed Jul 19, 2017 10:28 pm by LaurenVV

Hi, I started vulvodyniasupport.com at the age of 28.
I was a leader when there was no help, no forums etc.

As I went on my path, I found acupuncture, herbs and time helped me recover.
Most never do.

I met a wonderful woman named Hanna. She was a patient and became a support leader. She lived in FLoroda.

I have moved on from the support world and found a career that allowed
Me to bring my …

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anyone from southern california in here?

Tue Jul 12, 2011 6:43 pm by Melissa777

Hi Im just wondering if anyone here is from so cal- USA
I am in san diego- but from LA!!!

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Anyone else try Cold Laser therapy/ Low Level Laser Therapy for their vestibulodynia?

Tue Jul 04, 2017 9:01 am by Tired89

Hello everyone. It's been quite a long time since I've posted. I've been extremely depressed and bottling it all up. I've been seeing a pelvic floor therapist (it's only been 4 visits) for my provoked vestibulodynia and the only reason she can get inside of me to do myofascial release and to use the dilators is because I use BLT (benzocaine, lidocaine, tetracaine) ointment on my vestibule prior …

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Clitoris Issues

Tue Apr 28, 2015 8:17 pm by January

I am going crazyyy trying to figure out what's wrong. Please does anyone else have an issue similar to mine? I'm only 22. So, basically when my clit is lightly rubbed, there is no feeling. However, when rubbed vigorously and directly, the burning and tingling sensations shoot down my legs and feet as if coming to the end of an orgasm but with no good feeling leading up. It's so strange. What …

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New member

Sat Mar 18, 2017 7:37 pm by Lisa1627

Hi ladies. I am new to the forum. I have had what I think is vulvodynia caused from hsv 2. So not only do I have the burning vag but the constant feeling of being contagious. I can honestly say that I hate my life and myself right now. There are days when I think I would rather be dead. I tried the amitryptline and it helped but if it's only making my brain think I don't have pain then it's …

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Post Full Vestibulectomy - 5 Years Later - Please Read

Tue May 02, 2017 6:18 pm by jen007

Hi All,

It's been awhile since I've written a new topic on the forum. Wondering if any of the same ladies are still here. I've come back to update you all on my post vestibulectomy results. I can't remember if I've done an update on my current state, so forgive me if this is repeated information... I can't remember how to view my old posts! Anyway, let me get on with my update.

For 4 years post …

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Recovered from Vulvodynia

Thu May 04, 2017 9:42 pm by chancesunny

Hey everyone,

Im a new member on this forum and wanted to share my story so I can help anyone who is feeling helpless. Maybe what worked for me can work for you. I'll try to make this short so you can go get better!

I had vulvodynia for about 3-4 years. In the beginning, it started with pain that I thought was just a yeast infection and then I thought it was a urinary tract infection or …

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injection to kill the nerve endings

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injection to kill the nerve endings

Post  CJ on Thu Jun 16, 2011 4:17 am

I'm writing for my wife. She's had pain since Feb 1999. We went to Boston, Ma. in 2005, where it was confirmed she has vulvodnia. She's been mistreated for years. Has been told, well you're not twenty-one anymore. Treated for yeast infections, when the lab results all can back negative. She's supposed to have an injection to kill the nerve endings next week and is a wreck worrying about it. Has anyonelse had sucess with having it done?
Thanks,
CJ

CJ

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Re: injection to kill the nerve endings

Post  Mouse on Thu Jun 16, 2011 10:26 am

Hi CJ,

I have no experience with this I just wanted to say welcome! We all try whatever we can to find an answer and generally things are very specific to an individual. That is not everyone has the same symptoms so different things work for different people. I think what is really helpful is making positive lifestyle choices. Reducing stress, treating the body with respect and taking the time to heal. Has your wife got a therapist? This is a really heavy load to carry, making sense of it helps a lot. a pelvic floor assessment can also be really beneficial. It's awesome that you are posting this for her. Clearly you have some idea how hard this is. It truly can be a soul destroying illness, keep up the support!

Mouse

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Injection to kill the nerve endings

Post  CJ on Thu Jun 16, 2011 12:37 pm

Hi,

Thanks for the reply. Yes me wife has been to therapist, she's had therapy for this. Plus she has been to acupunturist for treatments. Both things helped but neither cured the problem. She's using a couple of different creams, new specialy made up with a compound.
It has given her some relief.

My main goal is to see that she's treated properly and gets relief from the contant pain, burning, stinging, feeling swollen etc. She needs her life back, she needs to know what it is to live w/o contant pain, using ice packs, not able to ride in a car w/o discomfort, not able to exercise as she used to, not able to walk on our daily walks because she feels like
raw hamburger, sand paper like, and in tears.

At the moment she's very stressed over the up coming visit hopefully the doctor & nurse will fully explain to us what the porcedure is, will do for my wife & if there's any side effects. Otherwise she will not go thru it.

Thanks for your reply. This is very serious & this is not a crank get attention type message. It's to seek out if anyone knows about what the inject can do if they have had it.

Sincerely,

CJ

CJ

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Re: injection to kill the nerve endings

Post  Aussie on Thu Jun 16, 2011 12:57 pm

hi cj, sorry to hear your wife has been in such pain for so many years! I have vaguely heard of the injection. I dont think it sounds the best option. Should be a last resort, them again i dont know how many treatments you have tried. Has your wife had her pelvic floor checked for trigger points?

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Pain Block

Post  CJ on Thu Jun 16, 2011 2:41 pm

Hi Aussie,

Yes my wife has had pelvic floor treatment.That is one of the treatments that helped but did not cure. The actual pain for the nerve block is:Pudendal Nerve Block I'm going to add some website addresses incase you want to view them about this procedure.
http://www.webmd.com/a-to-z-guides/pudendal-neuralgia-overview
http://www.ehow.com/about_5136822_pudendal-neuralgia-symptoms.html
http://pudendalhope.org/
then the last one is more graphic Sad but shows a person going thru the procedure of killing the nerves with the injections, this page happens to have a male going thru it but there's no porn or adult picture, nothing that anyone going thru this could see & be offended by
http://www.urmc.rochester.edu/radiology/procedures/procDetails.cfm?procid=22&id=22&pageid=

We have spoken to the nurse over the phone since my last entry. They are very re-assuring and hopefully on the 23rd of June when my wife goes in to speak to them & the Dr. things will go well. Reguardless, we'll post something here explaining what was or was not done so others can read about it & make their own choices. This is also about keeping others informed of their options.

Thanks Again,

CJ

CJ

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Re: injection to kill the nerve endings

Post  CJ on Fri Jun 17, 2011 1:11 am

Hi Aussie,

Yes she's had pelvic floor treatments, still the problem exist Sad.
Thanks,
CJ

Aussie wrote:hi cj, sorry to hear your wife has been in such pain for so many years! I have vaguely heard of the injection. I dont think it sounds the best option. Should be a last resort, them again i dont know how many treatments you have tried. Has your wife had her pelvic floor checked for trigger points?

CJ

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Re: injection to kill the nerve endings

Post  hopeful on Fri Jun 17, 2011 1:12 pm

Hi CJ
I think from reading your comments that your wife is having a pudendal nerve block - is that correct? If that is the case then I have had the procedure. Assuming that your wife is having the same procedure as me the it does not kill the nerve endings is just numbs them for a period (an hour or so). The idea is that if the pain is switched off by numbing it then when the anastetic wears off the brain signals that are wrongly thinking there is pain (the neuralgia) will not switch on again. According to my doctor is works to some extent in 60% of patients (sometimes only for 6 months but still better than nothing and it can be redone). This procedure does not have any significant side effects (assuming it's the same as the one I had). I had this under general anastetic and therefore there are the usual risks of that. One side effect which unfortunately I had is that the nerve endngs can get 'angry' because the procedure does put a bit of pressure on them and can cause a flare up. This did mean my pain flared up badly for about 2.5 weeks after the procedure and I was given an opium patch to enable me to sit & sleep during this time but after that period I was back to the same as before the procedure. Whilst the procedure did not work for me the flare up was manageable and reasonably short, I had no long term damage and therefore I would recommend your wife tries it as it could work for her. Hopefully your doctor can provide you with detailed guidance to confirm if what your wfe is having is the same as what I had. If your wife's procedure os different and her nerve endings are being permanently killed then that does sound very major and is not something that I have hear of. I hope this helps in some way and all the best to your wife.

hopeful

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Killing nerve ending--pudendal nerve block

Post  CJ on Fri Jun 17, 2011 11:00 pm

Hi Christine,

Thank you for your reply and information. Yes that is exactly what the procedure is called. And your e-mail helped my wife understand more what might happen. She now has a better outlook before getting to the doctor.

I'm copying your text so that we can explain to him how it worked for you or rather how it didn't work in the end. That way he'll be cable to hopefully address it concerning my wifes
visit & her choice of whether it's worth the risk etc.

Once again, after we have been to the doctor on the 23rd of this month, 8am our time, after we've returned home & after my wife has had time to recover from the visit we'll let you & others here in this forum know the results. We'll let you know even if she choses to not have it done.

Again thank for a very helpful & informative message.

Sincerely,

CJ

Incase you want to see who we are & see a picture of my lovely wife you can go to one of my websites I made & see our picture.
http://www.cjsmainevent.com/EverGreen.html
Feel free to visit any other of my sites also since I make them as a hobby. But this page was special for my wife.

CJ

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Re: injection to kill the nerve endings

Post  jules on Sat Jun 18, 2011 3:23 am

CJ, your wife will be getting a Prudenal nerve block. I have had four nerve blocks, two of which were in the Prudenal nerve and two were in nerves that are lower in the tail bone area. Unfortunately for me, i had no relief from any of them. I was told it may help (relieve pain) for a couple of days, few days, few weeks or not at all. For me, it was not at all. My doctor told me 'IF it worked, they knew they were dealing w/ the nerve that was causing the pain. As a result, they could cut the nerve via surgery, and hopefully the pain would be gone. Well, because it was not effective for me, my that nerve will not be cut. I don't remember what your wife has tried, but, i recommend physical therapy for sure. In addition to P.T, I am on Neurontin (anti-convulant) Lyrica, and Cymbalta. I also just started acupuncture last week. I plan to have surgery in mid-july. the surgery is to have wires implanted in my spine...called a neurostimulator. i will have wires in my spine w/ a battery attached and a remote control to sent impulse to the nerves that interrupt the pain message to the brain. i am trying to remain hopeful. i wish your wife good luck and hope she or you post with the results and any questions that come up for you. thinking of you.

jules

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Killing nerve ending--pudendal nerve block

Post  CJ on Sat Jun 18, 2011 1:22 pm

Hi Jules,

Thanks for your input also. All this will help assist my wife in asking the right questions.

At this point I'm not sure if she'll except the blocking to be tried. She's having a rough time dealing with the idea things could go wrong and that she might be worst than before or right back at the start. From a scale of 1 thru 10, she's at a 4 most days sometimes down to a 2, but never with out discomfort Sad. Many days she's at an 8 or 9, without even doing anything like exercise or walking alot. She can wake up feeling great & an hour later be at a 4 or 5 level. This is taking a toll to say the least.

She had acupuncture for about 6 months 2 yrs ago & went from an 8 when she started to about a 2 when she finished 6 months later after she stopped she became to have increased discomfort and pain.

Once again your infomation and Christines information yesterday has been very helpful in understanding what may be in store.

Sincerely,

CJ

CJ

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Re: injection to kill the nerve endings

Post  jules on Fri Jun 24, 2011 3:51 am

Cj. just checking in to see how your wife is doing. I can't imagine a nerve block making the pain worse. i wouldn't have tried it four times if that was the case. hope all is well w/ your wife. you are a great looking couple. She's lucky to have a husband who is willing to go online to search for information and support for her. i do my own looking for support and research...LOL Nevertheless, my hubby is very supportive.

jules

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Nerve Block

Post  CJ on Fri Jun 24, 2011 12:21 pm

Hi Jules,

Well the appointment went well but my wife thought the new medications were helping her as her pain level was only at a 3 yesterday morning. She talked to the doctor who was very understanding and gentle. He didn't push the injection but explained all about it.
When we returned home 2 1/2hrs away, she was at a level 7 and wished she had had it done. So now it appears we'll have to go back, we're not sure when. He did write out a new Rx for her and she wants to try it, but if she trys it for 30 days & if it isn't helping, she'll need to return & he explained there might be a need for 3different injections all about 4 weeks apart, it'll present a problem as we go south in the winter & will be 12hrs
from his office. So we'll see what she decides.

Thanks for the nice comment about my helping her. I'm happy to do it as she needs to get well & feel well again, for her & me. It's sad to see her in pain/discomfort most of the time.

Thanks again to you & all that have been supportive in this matter.

Sincerely,

CJ

CJ

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Re: injection to kill the nerve endings

Post  jules on Fri Jun 24, 2011 11:25 pm

I'm guessing your wife's pain increased because of the pressure on her vulva as a result of sitting in the car for the ride home. I have to sit on a foam donut no matter where i go. i have four of them. I have one at home, work and in the car. My dog pretty much destroyed the fourth one. He loves ripping up the foam. I recommend a cushion w/ a hole in the middle if your wife has more pain after sitting. I honestly can not sit on a chair at all. What meds did your wife get? In regards to the nerve blocks, i was told that i would have a series of them if i felt relief after receiving one...no such luck for me. But, i tried different nerves. I had 6 days of relief after one block. It was not in the Pudendal Nerve. It was a nerve lower in the spine (tailbone area)

Doctors wouldn't use nerve blocks on women w/ this disorder if it didn't help some. I have had a lot of luck w/ meds. They reduced the pain. However, they don't work on-going. you need to adjust the dose or change meds. It's frustrating..but we can't give up. I'm glad to hear her pain is not always at a 8 or 9. I take Percocet three times a day to take the edge off of the pain. That helps! Too bad you have so far to drive for the nerve blocks. Good luck!

jules

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Nerve Block

Post  CJ on Sat Jun 25, 2011 2:37 am

Hi Jules,

Here's the 2 main med's my wife's using now:60 Gm Gabapentin 6% Lipoderm the other is ABD Laser Cream, it must be keep in the refrigerator to keep it cool.
Also he's given her an Rx for a new cream I'm going to try & write evrything done that he put on the Rx incase it helps you or someonelse:

Please compound for Vulvodynia
(1) Katamine 5%
(2) Gabapentine 6%
(3) Clonidine 0.2%
(4) Emla 5 %
(5) Amitriptylias 1 %
(6) Keroprpten 3 %
#5 & 6 I'm not positive of the last letters of each but think I typed it correctly.
direction: apply to vulva as directed, twice or three times a day.

disp. 60 gms

Okay that's how it was written on the Rx he gave my wife. He says he's had luck with that formula with other patients. It might be something you want to mention to your doctor if you want to see if it'll help you. sunny

Yes my wife also has a donut & she has to sit sideways on it often to ride. Then move to the other cheek etc. At home usually she reclines, thats the easiest way to relax for her & not feel discomfort.

I came to this forum, in hopes that we'd find information and you & Christine and others have enlightened us. I was worried that if I did this some might not understand that I was doing it in that way. I'm glad that it's been viewed in the correct light/manner.

I hope that we have been able to help others by sharing my wifes plight & saying what she is using & what the new Rx will be in detail.

We'll be recontacting her doctors monday & trying to get her back & get her 1st injection and hope that it'll help & if she needs the other 2, we'll be able to get them before we head south for the winter. otherwise I'll have a long drive to bring her back or we'll have a long flight to fly back.

Thanks again for sharing with us & helping us.

I'd like to put a link on my pages to your main forum page for any other people that might have need for your type of information.

If you'd like me to do so, tell me what type of a picture, that would draw interest & maybe convince people to click on it & go see & maybe join your forum. And the exact url you want it linked to. If you have such a picture attach it to your reply & I'll save it to my pc & upload it to my domain for later use.

Thanks,

CJ

CJ

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Re: injection to kill the nerve endings

Post  alanasomething on Sat Jul 02, 2011 8:41 pm

Hi CJ, I had the Pudendal Nerve Block when I was 18, it didn't really help much for me, it went numb for about 5 hours or so, but didn't help the pain in the long run, however tell her not to be frightened! It's a doddle, especially if it's under anaesthetic! It just feels a bit funny when you're numb but by the time the anaesthetic has died down, a flare up (from being internally touched) will have calmed down.

I understand how your wife feels, I miss my life. I'm 19 now and have had this for almost 4 years, but your wife is really lucky to have a husband who is supportive and actually gives a damn Smile. Just having that support can be awesome for this condition when everything else fails!!! What a Face
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Re: injection to kill the nerve endings

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