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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 …

Comments: 6

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 …

Comments: 4

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


Next stop, Gabapentin...

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Next stop, Gabapentin...

Post  WaahwaahUK on Mon Dec 07, 2015 7:43 pm

So my GP said he can't prescribe me lyrica / pregabalin without me trying gabapentin first. So, I now have a prescription for gabapentin. I'm ever so slightly terrified as have heard mixed stories about side effects etc but have decided to try and stay positive. Who knows? It may work for me...
I'm still having physio for nerve issues with my pelvis. Finding that soooooo hard as it causes major flares in pain but persevering.
Just thought I'd post an update. At the moment, no one can say for sure what's caused my pain, however I think I have come to the conclusion so far that this time last year after being treated with lots of different meds like steroid creams and pessaries for an infection, my nerves have gone berserk. I've had subsequent pelvic issues from holding myself so tight for months on end. Physio is addressing that, and I'm hoping, the right meds will help calm my crazy nerve pain. Hmmm...

WaahwaahUK

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Re: Next stop, Gabapentin...

Post  PainBlogger on Mon Dec 07, 2015 10:58 pm

I've taken gabapentin in the past for my non-pelvic pain issues and I didn't have any adverse effects. I went up to 100mg, four times a day then eventually was switched to pregabalin as another dr preferred pregabalin for his patients. That was all before my pelvic pain started. But, yeah, I had no problems with gabapentin. I hope you have some success with it.

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Re: Next stop, Gabapentin...

Post  WaahwaahUK on Tue Dec 08, 2015 5:09 pm

PainBlogger just wanted to say thank you for your input on my posts since I've been here. I really appreciate it. It's so valuable just hearing someone say something like that about their experience sometimes. Going to give it a shot from tonight. Pregabalin seems to be an issue where I live due to cost.

WaahwaahUK

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Re: Next stop, Gabapentin...

Post  PainBlogger on Tue Dec 08, 2015 9:18 pm

You're welcome. If my protracted experiences with various medications etc ( Rolling Eyes ) can be of use to others then at least that is something positive Very Happy . Yes, pregabalin is newer and more expensive than gabapentin. Both can take a few days to get used to hence the dose is normally increased slowly.

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Re: Next stop, Gabapentin...

Post  WaahwaahUK on Wed Dec 09, 2015 4:32 pm

I just find your manner very down to earth, and encouraging. So thanks! Hard to explain without sounding weird!

One thing I want to do is write down in detail things that I've tried and things that have helped a little because without this forum, I would honestly never have known where to go to or what directions to try... It's just not something many people know or have experience of. And of course, so many potential causes or additional / related issues.

WaahwaahUK

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Re: Next stop, Gabapentin...

Post  WaahwaahUK on Sat Dec 12, 2015 10:49 am

4 nights on 100mg gabapentin and I couldn't face it any more... I'm so disappointed as I was determined to ride out any initial side effects... I had extreme night terrors and nausea and dizziness that I had to call in sick to work. I couldn't function. I go to work in pain every day as it is. So, I've stopped it for now. Going to try and continue with physio, magnesium, bicarb baths, epsom salt baths, wine (occasionally) and thinking about trying lidocaine for a period of time. The raw soreness I could do with some help in calming and wondering if that might help over a period of time.

WaahwaahUK

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Re: Next stop, Gabapentin...

Post  PainBlogger on Sat Dec 12, 2015 12:26 pm

Sad That's not good. A drug that makes you feel worse than you did to start with has to get the heave ho. If you can face trying something else and your GP is agreeable then there's pregabalin or duloxetine - and, as you say, lidocaine. I was better after eight weeks of lidocaine 2% (Instillagel 11ml syringes - one syringe lasted two nights) on cotton wool at night than I was before it. It did calm down the surface burning quite a lot. We all react differently to different drugs it's such a nuisance that it's not more of a predictable science. I'm going to hopefully increase my duloxetine when I see my doctor before Christmas. I'm sure it is helping me somewhat and (logically, though these things don't always follow...) if I up the dose it'll hopefully help a bit more.

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Re: Next stop, Gabapentin...

Post  WaahwaahUK on Sat Dec 12, 2015 4:53 pm

Yes I was so disappointed, as I really was ready to persist with initial side effects if I had bay but I just couldn't take it... I don't think he'll let me try pregabalin. He seemed reluctant due to cost. I may ask about duloxetine. Thank you. Really glad to hear its working somewhat for you. I'm feeling it all today - really aching and sore. I think I got so tense on the gabapentin which hasn't helped. Even my jaw hurt like crazy! Anyway, I've bought over the counter vagisil today to try a little of and make sure I don't flare with it first and then will hopefully give that a go.

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Re: Next stop, Gabapentin...

Post  PainBlogger on Sat Dec 12, 2015 5:06 pm

I hope it gives you some relief. Bear in mind that it may contain fragrance in the added ingredients (at least the similar Lanacaine does, or used to) so if you do get any irritation from it, it may be that rather than the lidocaine.

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Re: Next stop, Gabapentin...

Post  WaahwaahUK on Sat Dec 12, 2015 5:30 pm

I've just seen it says that on the tube! Thanks for the warning. I think I'll try it somewhere close but not currently sore first.

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Re: Next stop, Gabapentin...

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