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Newly diagnosed

Tue Oct 10, 2017 8:37 pm by Brevispink

Hello everyone. I have recently been diagnosed with unprovoked vulvodynia and would really appreciate some advice and support. I have had a chronic urine infection for 16 months and was on antibiotics for 9 of those months. I have been very uncomfortable for the entire time, but now I have absolutely unbearable stinging and burning all day with itching too. The infection has just about gone, …

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Recent "Poke" Pain - So Confused/Losing My Mind

Thu Oct 12, 2017 9:26 am by kelseybeth23

Long Story, but I am losing my mind and getting really depressed, so if I tell the full story maybe someone can help me.

Back in August I started to get an itch down there. Normally, in the past, when this would happen, I would change the way I wore my clothes, take more baths instead of showers, and use Monistat. This time, after about two weeks of no relief, I started to get concerned. I was …

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Does anyone else experience this?

Sat Oct 14, 2017 5:21 pm by Angelmegs

Hi— im new here. Im incredibly desperate so if anyone has any suggestions i would greatly appreciate it. Im a 20 year old female with vulvodynia and vaginismus. I was on the birth control pill (junel fe lo estrin) from age 13-18 because of severe menstrual pain. I used the xulane patch for a few months when i was 18 but eventually stopped BC altogether because it interferes with my med for …

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Post Full Vestibulectomy - 5 Years Later - Please Read

Tue May 02, 2017 6:18 pm by jen007

Hi All,

It's been awhile since I've written a new topic on the forum. Wondering if any of the same ladies are still here. I've come back to update you all on my post vestibulectomy results. I can't remember if I've done an update on my current state, so forgive me if this is repeated information... I can't remember how to view my old posts! Anyway, let me get on with my update.

For 4 years post …

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Do you ever worry that you're making it up?

Fri May 27, 2016 6:50 am by Lucci

Hello,

I was diagnosed with Vaginismus and Vulvar Vestibulitis 10 years ago. I was 18 and scared and moving across the country for college, but luckily was able to find a doctor who specialized in 'Women's Health' who immediately put me into physical therapy. Long story short, I've been in and out of the system ever since.

A few years into treatment, I had the diagnosis of PTSD added on for …

Comments: 7

Clitoris Issues

Tue Apr 28, 2015 8:17 pm by January

I am going crazyyy trying to figure out what's wrong. Please does anyone else have an issue similar to mine? I'm only 22. So, basically when my clit is lightly rubbed, there is no feeling. However, when rubbed vigorously and directly, the burning and tingling sensations shoot down my legs and feet as if coming to the end of an orgasm but with no good feeling leading up. It's so strange. What …

Comments: 2

Cured of Vulvodynia

Wed Aug 17, 2016 1:39 am by angelique2016

I used to post on this forum a long time ago and told everyone of how I was cured of my vulvodynia by a (Melbourne Australia) female dermatologist, she put me on very low doses of Nortriptyline (Allergron) for pain management about 10mgs I believe it was, and she also had me use Advantan Fatty Ointment (not the cream) (although I saw the cream for sale on ebay from germany) so it might help, as …

Comments: 10

Vulvodynia and IVF? Anyone done this? What does it do to the vulvadynia?

Sun Jul 30, 2017 1:03 am by Carolyn4

Hi everyone,

I have had vulvodynia since age 27--I am now 43 and it has been in pretty good remission.  I control it with acupuncture and herbs, and some cranial sacral therapy.  I have a 5 year old, had a pretty uneventful pregnancy which ended in a c-section.  My VV worsened after that, and I have worked hard to get it back under control (it took over a year to get it back into pretty good …

Comments: 1

Partial Vestibulectomy

Mon Jul 31, 2017 6:44 pm by JGD13

Hi all i am new here.
I had a partial vestibulectomy 21/7 for my provoked vulvodynia.
After a painful few days and feeling quite uncomfortable it seemed to get better. 1 week after i noticed some white stuff and gloopy discharge, it wasnt smelly or itchy but i got a check up at the gp surgery and the doctor said the stitches looked fine and i could just have a touch of thrush. He said this is …

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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