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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


Post-vestibulectomy (partial) recovery- going back to work?

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Post-vestibulectomy (partial) recovery- going back to work?

Post  Gill on Wed Jan 18, 2017 7:25 pm

Hi,

I have a partial vestibulectomy and hymenectomy scheduled for Monday. My doctor has said that I will need about a week to recover, but I haven't seen anything less than two weeks on Internet forums, and I've seen one comment that said you shouldn't go back to work before six weeks!

I know that some of the comments have been for full vestibulectomies; if you've had a partial, how long was it before you went back to work? I've seen people say that doing too much too soon can make the surgery less likely to work, so don't want to get it wrong, but have to try to convince my Dr, so wanted to know what people's experiences are of recovery from partial...?

Thank you!

Gill

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Re: Post-vestibulectomy (partial) recovery- going back to work?

Post  sj17 on Sat May 06, 2017 5:50 pm

Hi! I don't really have much to add in terms of your questions but I have suffered from Vulvodynia from the age of 15 and I'm now 21. I'm looking into getting surgery and I was wondering which is the doc / hospital you are hoping to get the surgery from?

Thanks, Sarah

sj17

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Dr

Post  Gill on Sat May 06, 2017 6:18 pm

Hi Sarah, I saw Dr Hutchon at Solihull Hospital. As far as I understood I was her first vestibulodynia vestibulectomy. Surgery and recovery were fine, and the area she operated on massively improved.

My pain was all primary provoked. I still have a lot of pain in other surrounding areas of the vestibule that weren't removed.

I would also recommend the Face book group 'vestibulectomy surgery and vestibulodynia support group'. If you look through the historical posts ppl also recommend Dr Gabrielle Downey in bham.

Gill

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Re: Post-vestibulectomy (partial) recovery- going back to work?

Post  sj17 on Sat May 06, 2017 7:14 pm

Hi Gill,

Thank you for your very speedy response. I have found the one in Birmingham you suggested, she seems to be very experienced. Was your surgery on the NHS? How did your surgery go as I know you had it in January? I have unprovoked vulvodynia as it just burns constantly, do you think she would be likely to operate on me?

Thanks

sj17

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Re: Post-vestibulectomy (partial) recovery- going back to work?

Post  Gill on Sat May 06, 2017 9:05 pm

Hi, I haven't seen her, and as mine is provoked I don't know whether surgery is a viable option for unprovoked, sorry. I just know that provoked is ideal.

My surgery was on the NHS. It was partial, 3pm to 9pm on the clock face. Surgery was smooth. Done in the morning, over by mid morning, went home the next morning (some ppl go home the same day), recovery for 2 weeks at home. The pain was never as bad as it was from vv! It just got itchy when the skin started to knit together between days 4-11ish. There's a lot of advice about how to deal w surgery on the Fb page I mentioned.

Spoke to dr recently and she said I'll need to wait a few more months before we know completely how well it's worked, but I have had massive improvement in the area that was removed. The tissue on either side (1-3pm and 9-10pm) is still a serious problem but not as bad as the tissue that was removed, and the surgeon said this can happen in the short-medium term with vaginal tissue. She said there may be further improvements over the next few months.

Gill

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Re: Post-vestibulectomy (partial) recovery- going back to work?

Post  sj17 on Sat May 06, 2017 9:43 pm

I truly hope you make a full recovery x

sj17

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RE

Post  Gill on Sat May 06, 2017 10:14 pm

Thank you. Same to you! Smile

Gill

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Surgery

Post  infinitelywondering on Sun May 07, 2017 9:26 am

Hi there,

I am having surgery in about 2 months by Dr Gabrielle Downey. I originally saw her privately but my operation will be on the NHS (You don't have to initially see her privately, I was just tired of waiting). I haven't had the surgery yet but she is brilliant and very knowledgeable. She assured me that she has an 80% success rate of being totally cured; the worst she said would be that my pain would just remain the same.

I'm hoping it all goes well! And I would definitely recommend her!

infinitelywondering

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Re: Post-vestibulectomy (partial) recovery- going back to work?

Post  sj17 on Mon May 08, 2017 8:53 am

Hiya! I have requested an appointment with her! How long did it take for your first appointment to now? Also do you have provoked or unprovoked vulvodynia if you don't mind me asking? I hope your surgery goes well and that you get the results you want.

sj17

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Re: Post-vestibulectomy (partial) recovery- going back to work?

Post  Kezz on Sat May 13, 2017 1:27 am

Hi girls! Such promising news of an experienced surgeon in England. Infinitelywondering, how much was the private appointment? I think I want to go down this route too. I've literally been waiting years and im sick of it now. After your private appointment did she suggest that you then go public for the operation? Also are you girls from Birmingham? My gp told me she couldn't refer me to anyone outside London on the nhs (i live in London) but I feel like she's wrong. I want the surgery so bad, i have provoked pain during sex.

Thanks gals xxx

Kezz

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Re: Post-vestibulectomy (partial) recovery- going back to work?

Post  sj17 on Tue May 16, 2017 4:04 pm

Hiya Kezz. I rung up the BMI hospital yesterday where the expert consultant is supposed to be at. It costs £180 for an initial consultation and I've had to wait around 2 and a half weeks (so still not that fab). It is a load of bollocks that your GP can't refer you to anybody outside of London. Demand it. Not sure how long you will be waiting for though - perhaps ask for an urgent referral or if you can afford it see her privately. I'm from Manchester and will be travelling down specially to see her. I will probably be going on the NHS for any procedures after that as it will cost thousands -- again each to their own though and depends what treatment she offers you. If you need any more info or help or advice PM me and I'll be happy to help Smile xx She will definitely be able to help you for your provoked pain.

sj17

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Re: Post-vestibulectomy (partial) recovery- going back to work?

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