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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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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 …

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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

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: 3

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: 10

Gabapentin Gel. or other topical creams

Thu May 10, 2018 9:43 am by Rosie21

Hi I have been suffering for some years with this abominable pain. I have tried most of the systemic drugs , I asked specialists and Doctors if I could at least try a topical treatment but because this requires a special prescription have been refused Has anybody had a chance of trying these? Thank you I will try to put a link on to some of the research into Gabapentin Gel. Thanks.

Comments: 1

What has been helping ME (much less pain over time!!)

Wed May 16, 2018 3:43 am by leoscc

Hello everyone! I vanished for quite some time as my life became consumed by not only this but other daily responsibilities as well. Shortly after my diagnosis, my boyfriend f 3 years left me as he did not want to deal with this. It left me broken for a while but also gave me time to figure out what the heck was going on. So, I will write out a quick list of my symptoms and what helped me.

1. I …

Comments: 0


Cystoscopy

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Cystoscopy

Post  Kathye10 on Wed Aug 07, 2013 6:52 pm

Hey Ladies,

I saw a new Dr today who is a highly regarded Uro/Gyno. He did the Q-tip test (like I haven't a a bunch of those already) and said that my urethra had pain when pressed upon. I have never had any bladder issues with this, as far as pain goes. But I do have to push a little extra to get it all out. I have pelvic floor dysfunction and I am seeing a PT for that. I'm questioning whether or not to do the test. He says I should know if there is something wrong in that area as well. He knows I cannot afford all these procedures so he will do it for just my co-pay and write off the rest (very nice) But I want to know if 1.) This is a painful procedure 2.) Can it cause any complications?

Thank you!
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Re: Cystoscopy

Post  Alana3 on Wed Aug 07, 2013 7:05 pm

If your doctor prescribed it its probably worth it. You're knocked out typically and it might burn to pee aftrr. With any surgery there is a risk of complications. You just have to ask yourself is it worth it to find out or stay sick? Sounds like they may be testing you for IC. Look it up or ask your doctor its done everyday tho so I doubt youre at risk for many complications but there's always a chance of anything happening. If you dont have bladder pain I don't know why he'd want to do that. PFD would cause you to strain a bit too...

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Re: Cystoscopy

Post  Sarah001 on Thu Aug 08, 2013 8:31 am

Pelvic Floor Dysfunction as you know causes us to force the urine out so that's definitely caused by PFD and it also can tighten around the urethral area and cause pain there too. Alot of people who have been diagnosed with IC either rightly or wrongly find treating the pelvic floor eliminates symptoms so PFD can mimic IC. I would say ask your physio about the procedure and see if he/she thinks it's a good idea, remember more pain will tighten the pelvic floor up even more so it's not something I would rush into without a physio talk first but if they think it's a good idea then it's entirely up to you whether you go ahead or not. IC has some dramatic bladder symptoms and if you've had none except for the pushing the urine out past tight muscles I think it's unlikely you have IC or any other bladder problems for that matter. Don't feel you have to have every test done suggested if it doesn't seem right for your symptoms, you can always go back once you've dealt with the muscular side of things if you still have some symptoms.
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Re: Cystoscopy

Post  Kathye10 on Sun Aug 11, 2013 2:29 pm

I agree. I did not mention to him that I have PFD, if he took a few seconds to check maybe he would have known. I believe it is totally muscle related and since I have no burning in my urethra or bladder, it think it's best to stay away from that procedure. I don't need any "after complications" or it making matters worse. Thank you ladies for your feedback. That's a big NO on that test, lol Hope you are both feeling as good as you can Very Happy 
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Re:CYSTOSCOPY

Post  Sunflower82 on Tue Aug 20, 2013 4:15 pm

Hi,
I had two years ago when I first started this long journey. I'm going to be honest it is very uncomfortable after its a little like going for a wee with shards of glass in it! But the more you drink the more it eases off! You have to go to the loo before you leave, after about 4 hours and lots of litres of water the pain does go way. They give you a course of antibotics to take as the risk of infection is high but I never got one ! For me they didn't find anything and said it was from IC but it turned out years later this was the start of vulvodynia.

Hope this helps.

Kt

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It doesnt hurt that much

Post  Jessica11 on Wed Aug 21, 2013 12:30 pm

Ive had it done before, and it really doesnt hurt that much. If youve had alot of bladder infections before and theyve done a clean catch on you (catheter inserted into bladder to get urine sample) instead of peeing in a cup, it feels like that. When they first insert the camera, thats the worst part of it, and it only lasts a couple seconds, and they also put numbing gel in there beforehand, its not as bad as you think its gonna be, but seeing all the docotrs and nurses around me, and being told it was considered a "surgical" procedure made me really nervous:cyclops: pale but it was cool, and the whole thing only took 10 min

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pee

Post  Jessica11 on Wed Aug 21, 2013 12:35 pm

Yea, while they are looking in there, they spray water in your bladder to get a better look see at things and I peed alot after, and it hurt for a few days a little bit when I peed, thats all, really, not a big deal.
Many times people with vulvodynia, also have a condition called interstitial cystitus.
Many times, the whole vulvodynia thing starts with interstital cystitus, cuz your on tons and tons of antibiotics to get rid of repeat bladder infections, and then you end up with a yeast or bacterial infections cuz ABX kill off all the good bacteria, and its just this whole vicious, horrible, nitemare cycle.

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Re: Cystoscopy

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