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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


Pain After Surgery

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Pain After Surgery

Post  JuniperRain on Tue Jan 28, 2014 7:38 pm

I know some of you have had great success after having a vestibulectomy so I thought maybe I could ask you all a question. Like I've mentioned before I had a partial vestibulectomy on December 24th and things were going well. I had my stitches removed last Monday (the 20th) and my doctor told me everything looked great and that my husband and I could try having sex this week but that it might be a little sore due to the scar tissue not being so stretchy. Well, it really hurt! But in a different way than it hurt before. It wasn't the stinging, raw burning pain like a thousand paper cuts and it didn't swell up a lot like it used to but it still really hurt and we had to stop. I was wondering if any of you had a similar experience and if so how long it lasted? Do you think vitamin E would help? Or any other suggestions? I'm lost.

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Re: Pain After Surgery

Post  Alana3 on Tue Jan 28, 2014 8:35 pm

I used dilators for a few months after surgery so I could control it and get used to it again. Also, I did physical therapy. You probably have a bit of vaginismus and are especially tense since it's always hurt you tense up and your muscles might spasm. I got muscle relaxers for that. The trick with the dilators, is to leave them in until your muscles start to relax and than move it in and out. You can start with a small one and go up to the big one. My doctor said if that didn't work I could do botox, but I decided to try this first. And it really worked. I would dilate for 10 minutes in my shower everyday either in the morning or after work. Also, if you stick your stomach all the way out and hold it there it will release your pelvic floor and help with spasms. But honestly what youre feeling now is more than likely muscle spasms. I would never in a million years have gone straight to sex. You need to be in control of your vagina right after this surgery. So try the dilators and get the name of a pelvic floor physical therapist and you should be set in a few months! Vitamin E is not going to do anything for you. It's all about exercise like any other muscle Smile hope this helps

Another suggestion, if you want to have sex with hubby (which I totally understand don't get me wrong!) have him just stay in you for a bit without moving. I don't know how exciting this will be for him or you, but once I started having sex again, that's what my boyfriend did for me and than we would do our thing after I felt comfortable. But remember your body has just gone thru a traumatic experience.

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Re: Pain After Surgery

Post  JuniperRain on Tue Jan 28, 2014 8:42 pm

Ok, that makes a lot of sense. Thank you! I went to physical therapy for a few months before I had my surgery but I haven't made any appointments to go back afterwards. I think I'll try dilating like you described and look into returning to therapy. Thanks for the quick response! It's really appreciated.

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Re: Pain After Surgery

Post  Alana3 on Tue Jan 28, 2014 8:56 pm

No problem- let me know if I can help you at all! Definitely go back to therapy it helps a lot!

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Re: Pain After Surgery

Post  Fingerscrossed on Mon Feb 24, 2014 3:13 am

I had my surgery on December 17 and just tried to have sex for the first time today (husband's birthday). I've been to four physical therapy appointments in the past four weeks with homework three times a week, but I don't think I was ready yet. I felt like my skin was tearing at the six o' clock position and I think my pelvic floor dysfunction might be worse than before. He said that it felt like my body was trying to push him out, even though I was attempting to relax. Very disappointed right now, but I have to keep trying.

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Re: Pain After Surgery

Post  JuniperRain on Mon Feb 24, 2014 3:29 am

I'm sorry, Fingerscrossed. I understand how you feel. I never returned to PT after surgery but I did work at home on dilating for a while. After that I did what Alana3 had recommended and just put my husband inside me as much as possible with out it hurting too much and just sat there, we literally didn't move and I just focused on relaxing. I made sure to be on top so I could control everything. It hurt a little but each time we did it it hurt a little less and I could handle a little more. It definitely wasn't exciting or sexy but I think it helped. Aside from this we started focusing on other intimate, sexual acts without penetration and I think in a way this helped ease my anxiety some. Just a couple of nights ago I was able to have pain free sex for the first time in six years but I still had some swelling and pain afterwards that lasted most of the next day. So I can't say it's 100% better but it's SO much better than it was. Don't give up. Smile

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Re: Pain After Surgery

Post  Alana3 on Mon Feb 24, 2014 11:18 am

Try a lot of lube

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Re: Pain After Surgery

Post  21andcounting on Mon Mar 17, 2014 4:33 am

Hi Guys! I'm really happy I found this post today. I had surgery on December 11th and just tried having sex this weekend. I wasn't on that large of a dilator size yet but I was drunk and hopeful. It hurt a lot and I couldn't get it in more than 2 inches, but we stopped immediately after I felt like something wasn't right. It's reassuring to hear that I'm not alone though. I am really nervous because I have trouble identifying what muscle pain is supposed to feel like, and I'm always trying to analyze if it is "normal pain" or not. It felt kind of like a burning on the muscles near the opening, but wasn't similar to the pain I had before. The burning feeling is what really freaks me out. What does the pain actually feel like with you guys?

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Re: Pain After Surgery

Post  Alana3 on Mon Mar 17, 2014 1:54 pm

I guess it feels like burning. If you read up to my other replies I would suggest doing that and not going at it when you're drunk especially if you haven't done it yet. Take it slow you just had surgery and things haven't had a chance to heal all the way yet it takes a good 6 months. Also try lube my bf and I use about a half a bottle (granted we have sex for hours but still haha). You're going to have to retrain your muscles and your brain because everything is expecting pain and you may subconsciously be tensing up. Which causes pain.

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Re: Pain After Surgery

Post  julesmp on Thu Mar 27, 2014 7:54 pm

I have actually had two surgeries (the first removed very little tissue, and I found a much better doctor after). While things are MUCH better than before, I do still have pain during sex, and I have random flare-ups. It's disappointing but I have to remember how much better life is now.

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Re: Pain After Surgery

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