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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 …

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


Vestibulectomy

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Vestibulectomy

Post  infinitelywondering on Sat Jul 29, 2017 6:50 pm

Hi ladies,

My vestibulectomy operation is scheduled for Wednesday the 2nd August; I'm really scared!
I'm going to post updates throughout the healing process- I keep having second thoughts but I've tried so many different medications that have failed me, this is my last chance. I'm only 17 so I am pretty young for this sort of operation AND I have exams to get into Med School this year - terrible timing!!

I'm super passionate about battling all types of chronic vulval pains such as vulvodynia and I hear it is something not widely recognised amongst medical professionals. My own GP told me that I am completely 'normal' and the pain is merely psychological Evil or Very Mad . It seriously saddens me that people don't understand and are not supporting us....

I know it sounds crazy and idealistic but I have been working my arse off to get good grades so I can get to medical school and kick some ass about chronic vulval pain. It cannot be ignored for much longer

I am lucky that I found Miss Gabrielle Downey, who I have mentioned before; she is a gynaecologist who specialises in this stuff and she is honestly as frustrated as me about it all. She works at BMI hospital in Edgbaston(private) and Birmingham City Hospital (NHS). I really think she is fantastic so if you are suffering and can make it up to Birmingham, I would recommend that you do. If you want to be treated quickly like me, I had a consultation privately for diagnosis and then was referred to NHS for surgery.

I have a very supportive family and a very supportive boyfriend- I won't let this get me down even though it is constantly at the back of my mind. I am excited yet terrified for the surgery and if anyone has any tips to help me, I'd be really grateful!!

Love,
infinitelywondering

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Good luck!

Post  jungleclover on Sat Aug 05, 2017 7:36 am

Hey man, good luck! That sounds so scary but I'm glad you're working on things, have a great medical team, and the support of your family. It's really hard having this problem when you have goals like med school. I'm trying to get into PT school and sometimes I wonder how I'll do it. Like how am I going to have a career where I have to walk around all of the time. Some days I feel great but others I want to curl up in a ball and not move. Either way, I really hope all goes well. Know that you aren't alone! Maybe you'll end up in the research field after med school and can help all of us ladies out <3

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Re: Vestibulectomy

Post  sj17 on Mon Aug 07, 2017 5:24 pm

<3 <3 Brave brave lady.

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Re: Vestibulectomy

Post  infinitelywondering on Wed Aug 09, 2017 11:34 pm

Hi ladies I'm really worried...

I've started having this horrific burning since my vestibulectomy. I had a look and it appears that I must have some sort of infection as on one side my skin is bright red and burning hot Sad shall I contact my GP asap?

X

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Re: Vestibulectomy

Post  sj17 on Thu Aug 10, 2017 12:51 am

you probably have a yeast infection or a UTI. contact your gp immediately tomorrow. Nothing to worry about though, they're quite common post surgery xx

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Re: Vestibulectomy

Post  Ilya on Sat Aug 12, 2017 4:34 pm

Hello,
I hope you contacted your doctor and are feeling better already. Thanks for sharing your story with us Smile
I am sure with this positive attitude of yours you will overcome this pain ans will be a successful dr and will help a lot of women

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Re: Vestibulectomy

Post  Hopeitworks on Sat Aug 12, 2017 4:56 pm

I hope you contacted your doctor and it's going away. I had a Vestibelctomy recently also and I'm so worried it will get infected. Thanks for sharing your story!

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Re: Vestibulectomy

Post  infinitelywondering on Sun Aug 13, 2017 1:29 am

Hi ladies,

Thank you all for your lovely and kind responses.

The burning has calmed down, I'm not entirely sure what it was ? I'm feeling fantastic at the moment, I'm back to driving, my normal life style and going out again- one week after surgery!

I'm still taking things slowly though but I do seem to be healing really nicely. I think for me the thing that has helped lots is bathing in a bidet and recently I've been using salt water to help the wound (I thought that would hurt but it didn't). I've continued using the manuka honey and I'm sure it's working.

I've been off my pain killers for two days now and I feel great. I don't know why I've suddenly started feeling better but I am certainly not complaining ! Who knows if the surgery has worked, but at least for now everything is looking good

Thank you!

X

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Re: Vestibulectomy

Post  Hopeitworks on Sun Aug 13, 2017 1:33 am

I am so happy for you!

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Re: Vestibulectomy

Post  infinitelywondering on Sun Aug 13, 2017 1:40 am

How are you? X

How is your recovery going ?
I hope it's all okay Smile

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Re: Vestibulectomy

Post  Hopeitworks on Sun Aug 13, 2017 1:50 am

I'm doing well! The only pain I have is from healing. I have been taking it easy but I did go to dinner and lunch with my husband. We went shopping and it was nice to get out. But when I overdo it I start to feel it. I'm still walking slow. Still hurts if I sit directly on it. If that makes sense. I sit kinda on one but cheek. But I am so happy I don't have V pain! After 10 yrs of constant pain I am speechless! I stopped the pain meds 4 days ago. It still hurts to wipe when using the bathroom. I'm still taking baths or sitz baths at least 2 to 3 a day. I have no signs of infection but itchiness comes and goes.


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Re: Vestibulectomy

Post  Ilya on Sun Aug 13, 2017 3:53 am

Very happy to hear both of you doing better. Keep us posted

Love

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Re: Vestibulectomy

Post  infinitelywondering on Sun Aug 13, 2017 9:54 am

That's absolutely brilliant, you're right to keep taking things slow.

I hope this positivity continues for us
Smile

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Re: Vestibulectomy

Post  infinitelywondering on Fri Aug 18, 2017 10:50 am

Hi guys,

I think I have an infection because I've experienced lots of swelling and yellow-green discharge from the wound....

Shall I contact my GP for antibiotics?

Thank you x

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Re: Vestibulectomy

Post  Hopeitworks on Fri Aug 18, 2017 12:39 pm

Oh No! Keep us posted.

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Re: Vestibulectomy

Post  sj17 on Sat Aug 26, 2017 3:55 pm

How is the infection now? X

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Infection update

Post  infinitelywondering on Sun Aug 27, 2017 9:42 am

I've been taking augmentin and had quite bad side effects ! However the infection has cleared up and I feel much better now Smile

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Re: Vestibulectomy

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