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Anyone have pain with urination?

Tue Oct 16, 2018 2:35 pm by mertzwl

Hi everyone - I can't believe I've been dealing with this for almost 10 years and an appointment scheduler at a urogyn office is the one to suggest I look into vulvodynia. Honestly, I don't care, I just thankful I might have an answer.

I have pain in one specific spot right around the urethral opening so it always coincides with urinating (it's not a uti). Does anyone else deal with pain …

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Diagnosed recently, looking for advice

Sun Sep 02, 2018 12:51 am by Cloudberry

Hi everyone,

I'm so glad I found this forum! I was diagnosed with vulvodynia/vulvar vestibulitis (still not sure about the difference between all the different terms) a couple of months ago and I could do with some advice. This is probably going to be a lot of text because I just want to get everything off my chest, so please bear with me.

I’m a woman in my late 20s. Before getting diagnosed …

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From a concerned husband

Thu Jul 12, 2018 10:45 pm by ConcernedYorkieHubby

Hello everyone,

This is probably a little unconventional, but I’m a man who is here because his wife has been diagnosed with vulvodynia. The poor girl has been suffering with vulva pain for around 10 years now, and I’ve been by her side through the pain and tears and doctors misunderstandings the whole way, and we’re both exhausted and terrified by the whole experience.

I’m sure a lot …

Comments: 4

Had this for 5 years, looking for people who understand

Sat Oct 06, 2018 9:46 pm by blackberrie

Hey all. I'm really struggling to find anyone in real life who can really understand what I'm going through. I've had vestibulodynia for 5 years now and I'm single. Obviously it has completely affected how I approach dating and sex and the fact that I can't really talk to people irl about it has made me feel very lonely. I've found that a lot of the women who have this problem are married and …

Comments: 2

6 year sufferer but I’ve found some hope

Wed Oct 10, 2018 1:33 am by Npage14

Hey, ladies! I’m new to this support group, I’ve thought about doing something like this for a while so I wanted to try this out! I’ve had vulvodynia for 6 years now, I am self diagnosed. I’m 20 now and the pain started when I had my first encounter with sexual contact when I was 14(I still remained a virgin though it was fingering). For a couple years the pain was so bad I could hardly …

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Hurting, Burning, Itching, and Worn Out

Thu Aug 09, 2018 10:55 pm by donnambr

This vulvodynia that I'm currently suffering with is so cruel. I hurt, I burn, I itch. When I first got this several years ago, before the internet, I though I was the only one with this awful disorder. Doctors couldn't figure it out. I felt so alone and devastated. Somehow it disappeared for a few years and now I'm suffering again. This dreaded V misery is back and I feel like I will be with …

Comments: 5

Hi girls! New in this forum

Fri Jul 13, 2018 2:31 pm by Gaby

Hi everyone!

Also joining the V club, Here my story:

It all started last year in september with a very bad throat infection for which i had to take antibiotics for about a month. This cause several yeast infections (candidia albicans).... one after the other!. I had them every month from october 2017 till march 2018. During this period i use an incredible amount of anti-fungal creams and …

Comments: 1

Newbie and feeling helpless

Wed Jul 11, 2018 1:52 pm by Taylor1

Hi, I found out a few weeks ago that I have this condition, started off at the end of April as a uti took strong antibiotics then got a thrush infection and now this.. My doctor has tried me on amitriptyline and gabipentin and both made me so poorly I couldn't take it plus I have seen what long use of these drugs has done to my mom for pain and its not good. I am using coconut oil which does …

Comments: 3

I'm new to this forum and would love some advice! :)

Tue Jun 05, 2018 4:13 am by anikita

Hi lovely gals!

I'm honestly hoping to get any bit of advice anyone might have to offer. I go from bouts of sobbing hysterically in my boyfriend's arms to feeling confident that I can beat this.

I haven't been actually diagnosed with vulvodynia but EVERYTHING under the sun has come back negative. I started having sex 4 years ago after starting Lo Loestrin, with my first and current boyfriend …

Comments: 6


Newly Diagnosed with Pudendal Neuralgia

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Newly Diagnosed with Pudendal Neuralgia

Post  AroraNightfire on Sat Mar 31, 2012 6:52 pm

I am 27yrs old and have for the past 9yrs been suffering with vulvar itch, needle like stabbings in my labias, raw pain upon urination, and the last symptom which developed a little over 1yr ago was knife like pain in my buttcheeks when sitting. I was misdiagnosed with yeast by 3 different doctors, then with vulvar distrophy, then vulvodynia, and last week I was diagnosed by Dr Conway of NH with pudendal neuralgia.

I have already done a s1s2 nerve block with 120mg of depomedrol last june. Conways recommendations are 2 more nerve blocks, this time pudendal between the sacrotuberous and sacrospinus ligaments. If that fails to work then he wants to try pudendal nerve decompression surgery.

I'm nervous and scared because I've been misdiagnosed so many times in the past. I want to make sure this time it is pudendal neuralgia. I don't want to end up worst because of nerve blocks and or nerve decompression surgery. All I hear is negative things online concerning nerve blocks on the pudendal hope site.
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Re: Newly Diagnosed with Pudendal Neuralgia

Post  Sarah001 on Sat Mar 31, 2012 7:18 pm

Hi, I have to say I've been having a few discussions with my physio about Pudendal nerve involement because she thinks it may be a factor in my problem. With me I have tight tender muscles all around the sit bones (common place for the nerve to get trapped) and my sacral ligaments are all messed up (another common place) also tight pelvic floor, piriformis and other hip rotators are a common factor too. She said she wants to soon start a little pelvic floor work on me to try and free any areas where the nerve might be getting irritated and I asked about nerve blocks. Her opinion of the nerve blocks is that they make matters worse from a physio point of view by decreasing sensation to certain areas so the patient can no longer control the muscles correctly and therefore clenching or a complete lack of activity tends to happen so she advised me not to have them. The surgery will definitely destabilise the sacroiliac joints which in turn can set off a whole myriad of painful problems (I'm living proof of that because I have very unstable SI joints and it hurts like hell) including referring pain to the genital area. Have a search for pelvic floor physio on that site because I've found some very encouraging stories about it on there and it should be part of any pudendal nerve treatment before nerve blocks are even considered. A good physio will be able to touch the nerve to see if it is indeed part of the issue by eliciting pain when touched so it might be a good idea to hold off on the nerve blocks until you've had some decent physio first. Tight muscles trapping the nerve can be treated with more conservative means although it will mean alot of homework to get results.
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PT

Post  AroraNightfire on Sat Mar 31, 2012 7:30 pm

I had physical therapy in Orleans Ma Dec2010, Jan2011 and the physical therapist gave up on me because I wasn't able to do the leg exersizes she wanted me to do because it caused me too much pain. She pressed on my ass muscles for 30min and it hurt like hell, felt like pressing on bruises when she held my ass muscles. I don't feel physical therapy would be beneficial. I would rather run on my treadmill for 1hr than do pt again. I've worked with inserting a dildo and leaving it for 15min each day for 1 week and I had to stop because my pain was only worst during the day. I just don't feel it is helpful for me.

Leg movements hurt my crotch, when I bend over to pick stuff up I get needles stabbing my clit labias. I'm on 600 to 900mg of lyrica a day for pain control.
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Re: Newly Diagnosed with Pudendal Neuralgia

Post  ButterflyLiz on Tue Apr 03, 2012 5:47 pm

I may have said this before but through the vulval pain society you can get in touch with a lady who had successful pudendal nerve entrapment surgery in France. Page here:

http://vulvalpainsociety.org/vps/index.php/vulval-conditions/pudendal-nerve-entrapment

I know the surgery's not always successful but she should be able to give you a good account of what she went through and it's always good to have more info.

Still not sure if PN is one of my issues. My experience is that a pudendal nerve block didn't make me any worse but neither did it make me any better.

Do as much research as you can, especially on the experience of the surgeon if you decide to go ahead.
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Re: Newly Diagnosed with Pudendal Neuralgia

Post  embem on Sun Apr 15, 2012 2:44 pm

Hello, I may also have pudendal neurolgia. Mine was caused by surgery I had for vulvodynia this past August. Now the vulvodynia is nearly gone, but the pudendal neuralgia is even worse! My physical therapist believes that I have pudendal neuralgia, but I have not been officially diagnosed.

Might you be able to find a different physical therapist? How horrible that your PT gave up on you! She doesn't sound very good! I'm in Rochester NY and mine is absolutely wonderful. She's very knowledgeable; however, I have not personally seen any benefits yet.

Please post if you have the nerve block. My physical therapist recommended it. I have not had a nerve block, but I have had a muscle block. It helped a little for about a day. I also just started back on Gabapentin, which my GYN specialist put me on, but the PT also said it would help with the nerve.

I have similar symptoms to you. I have the stabbing between my butt cheeks and soreness down my thigh and bottom. I can't wear jeans or khakis, and it is very painful to sit. The National Vulvodynia Association can give you a list of doctors and physical therapists. I know you don't have vulvodynia, but my physical therapist is on that list and is very knowledgeable about pudendal neuralgia. Good luck! Keep us posted.

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Re: Newly Diagnosed with Pudendal Neuralgia

Post  mary jane on Thu Oct 24, 2013 12:59 am

embem, what type of surgery did you have to vulvodynia that could possibly trigger PN?
did you excise your bartholin's ?
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pudendal nerveblock

Post  Maria74 on Tue May 03, 2016 3:00 am

Hi
I've had 2 nerve blocks and I'm going for my third in the end of this month. I drive over 2 hours to Rochester NY to get them. My pt said she can tell a difference but I'm still in pain but I can tolerate her following the nerve from the inside better but I still have constant burning. I've been in this hell for the past 19 years and I've tried countless meds botox and more. Now I'm giving it one last try with nerve blocks Cymbalta and pt.





embem wrote:Hello, I may also have pudendal neurolgia.  Mine was caused by surgery I had for vulvodynia this past August.  Now the vulvodynia is nearly gone, but the pudendal neuralgia is even worse!  My physical therapist believes that I have pudendal neuralgia, but I have not been officially diagnosed.

Might you be able to find a different physical therapist?  How horrible that your PT gave up on you!  She doesn't sound very good!  I'm in Rochester NY and mine is absolutely wonderful.  She's very knowledgeable; however, I have not personally seen any benefits yet.  

Please post if you have the nerve block.  My physical therapist recommended it.  I have not had a nerve block, but I have had a muscle block.  It helped a little for about a day.  I also just started back on Gabapentin, which my GYN specialist put me on, but the PT also said it would help with the nerve.

I have similar symptoms to you.  I have the stabbing between my butt cheeks and soreness down my thigh and bottom.  I can't wear jeans or khakis, and it is very painful to sit.  The National Vulvodynia Association can give you a list of doctors and physical therapists.  I know you don't have vulvodynia, but my physical therapist is on that list and is very knowledgeable about pudendal neuralgia.  Good luck!  Keep us posted.

Maria74

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Re: Newly Diagnosed with Pudendal Neuralgia

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