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» Anyone have pain with urination?
Yesterday at 9:55 am by Gaby

» New member - just looking for feedback
Mon Oct 15, 2018 5:40 pm by mertzwl

» Will I ever be able to wear jeans?
Sun Oct 14, 2018 4:14 pm by Npage14

» Amitriptyline Success and new-found love
Thu Oct 11, 2018 8:29 pm by megaanx

» Diagnosed recently, looking for advice
Wed Oct 10, 2018 2:30 pm by wuhujen

» Dose HAVING VULVODYNIA MEANS YOU HAVE LUPUS?? HELP IM FREAKING OUT!
Wed Oct 10, 2018 2:01 pm by pussycat

» From a concerned husband
Wed Oct 10, 2018 1:46 pm by shope610

» Had this for 5 years, looking for people who understand
Wed Oct 10, 2018 1:55 am by Npage14

» 6 year sufferer but I’ve found some hope
Wed Oct 10, 2018 1:33 am by Npage14

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 …

Comments: 0

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


Vestibulitiis surgery

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Vestibulitiis surgery

Post  Coco23 on Wed May 03, 2017 12:31 pm

Hey girls.

I am 23 years old and I've been suffering from Vesti from the age of 19(the first time I have tried to have sex).
As long as I remember I never fingered myself and never used tampons due to pain and general fear.

A month and a half ago, on 16.3, I had a vestibulitis surgery after 4 years of suffering.
I went to my doctor twice after the surgery..last time was 4 days ago and he told me I can have sex now and that it looks great.

So I tried.

I still have pain in the vulvar area, a bit less but similar type of pain of what I had before.
In addition, the Veginismus is now worse than what I had before. Probably because I expected it to be painless and it didnt happen.

I am really sad and hopeless.
I dont know what to do anymore...
I thought I should do a second surgery with another doctor- but I read somewhere that it might take time to heal completely.

I am now 1.5 months after my surgery.. touching my vulvar area really carefully with my fingers and it is painful.. do u think its an unsuccessful surgery and I should redo one or is it just a matter of time?

* The surgery was done on the bottom area of the vulvar only since that was my problem.


Thank you very much for your time... hope to hear from you soon

Coco23

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Healing...

Post  Gill on Sat May 06, 2017 7:35 pm

Hi Coco,

I don't know whether you should have further surgery, but I can tell you what my surgeon told me!

I didn't have my follow-up with my surgeon until 3 months post-surgery, and she said the pain I get might still decrease further. I did have massive improvement in the area that was removed, but still significant pain in surrounding areas, which she said could be because of the way the skin in the vestibule heals, which can take longer than other places.

I am seriously considering further surgery, but will wait a few more months before going for it.

Gill

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Re: Vestibulitiis surgery

Post  Coco23 on Sat May 06, 2017 11:17 pm

Hey Gill thanks for the reply.
In my case its not only the surrending area but also when I try a finger inside of the vagina..it is painful jist like the surrending area and a similar pain to what I had before. Maybe worse. My doctor told me it looks good that I can already have sex..and I tries few times but it only gets worse and burning after everytime.

Do you also have pain if you insert a finger or just outside of it?

Coco23

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Re: Vestibulitiis surgery

Post  Gill on Sun May 07, 2017 12:06 am

Hey there, I'm not sure what you mean when you say the surrounding area as opposed to inside. To me it feels like pain on the inside; vestibule means hallway, like entrance, and that's what it's like. It used to feel like I was trying to push a flaming hot poker in there. Now (3+ months after surgery), its more like a heated needle poking in the specific places that still hurt. I have never had external pain, like on the labia, etc, like some ppl get. My drs held up a mirror and showed me what they were poking to see if it hurt. If your doctor didn't show you what the different bits were they were taking out, that wasn't very helpful for you.

When I manage to get anything through the entrance and inside, the bit that's properly inside doesn't hurt, but the entrance still hurts.

It still hasn't been very long since your surgery, so you should probably give it a couple of months more at least, and try to get a mirror down there to work out what's happening. I am planning to wait at least 6 months after surgery before deciding whether it's worked or not. People say it takes a year to fully heal.

You mentioned that you now have vaginismus; you'll know you need to treat that as well. I suggest you find a good psychosexual counsellor and/or Physio/biofeedback to help with that if you haven't already.

Gill

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Re: Vestibulitiis surgery

Post  flick001 on Mon May 22, 2017 10:19 am

Hi guys,

I was wondering from your posts you mention the possibility of having a further surgery - what exactly is this? the same sort of thing as the first vestibulectomy?

I have just had the surgery and up to week 4 recovery. I feel like the pain is a lot better but not fully gone - i can't tell much though obviously as its only been 3 weeks. But just wondering if you know what further surgery could be an option if the nerve pain doesn't fully resolve?

Thanks

flick001

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Re: Vestibulitiis surgery

Post  Gill on Mon May 22, 2017 4:18 pm

Hi, when I wrote about further surgery, it's because my dr only removed the tissue between 9 and 3 on the clock face. The other half of the circle that wasn't touched, and that's where my remaining pain is, so I'm exploring whether taking more out will improve things further. A couple of people on the Facebook group 'Vestibulectomy Surgery and Vestibulodynia Support Group' mention having a partial vestibulectomy followed by a total. My surgeon didn't want to remove the top because she said there are really bad things that can happen, like fistulas. It might be worth asking ppl who've already had both what they know about it.

Gill

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Re: Vestibulitiis surgery

Post  sj17 on Tue Jul 04, 2017 10:55 pm

Hi Gill,

Who did you have your surgery with if you don't mind me asking?

sj17

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Re: Vestibulitiis surgery

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