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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

Thu Aug 03, 2017 6:15 pm by infinitelywondering

Heya,

I had my vestibulectomy (full) about a day and a half ago. I was very sick and poorly just after the op and experienced intense pain down there Sad

However, today I came home and have done the following things:

-washed with warm water
-applied manuka honey to the area
-ensured I wash at least 3 times a day and dab the area dry gently
-use frozen peas to stop the swelling

As of now I am …

Comments: 1

New w/ Secondary Provoked Vestibuldynia

Wed Apr 26, 2017 11:46 pm by Birdy

Hi everyone,

I'm here because I'm pretty sure I have secondary provoked vestibuldynia, even though my gyno is still "optimistic" it is not.  My problem started six months ago when I got my second UTI in as many months (after going 25 years of life without one) and then ended up with a bad yeast infection (also my first one ever) thanks to the antibiotics.  Ever since the yeast …

Comments: 3

Anyone from the PNW?

Sat Aug 05, 2017 7:54 am by jungleclover

I'm located near Portland and I would be really cool to actually meet someone with this issue. I think my roommate in college technically had this problem. She had an overgrown hymen removed and can't deal with penetration as a result. But she is gay so it seems like it hasn't been a huge problem for her (although we didn't talk about it much so there was possibly more to it than she let on). …

Comments: 0

Constant pain, I want to die.

Fri Jun 02, 2017 4:29 am by Meggiemay

I posted on here a few years ago but my symptoms went away with the inflammation. I didn't get so lucky this time.

For over three months, i've had terrible rawness, burning, soreness in the urethral/vestibule area and pressure/hypersensitivity in the clitoral area. I've also had some lower abdominal pressure and burning on my butt. I can barely walk! My gyno hasn't been much help. I'm on …

Comments: 22


Surgery Success - Still early days, but going well so far!

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Surgery Success - Still early days, but going well so far!

Post  jjr23 on Wed Jan 11, 2017 2:36 pm

Warning: This post is very long, but definitely worth reading if you are curious about surgery recovery and what a realistic surgery recovery is like. Details included regarding what sex felt like for the first few times post-surgery, and how my vagina felt afterwards.

Recovery isn’t black and white. The outcome of surgery (in particular, a vestibulectomy) isn’t a complete failure or a complete success. It is somewhere in between, with varying degrees, and with progress occurring slowly, then quickly, and then sometimes a couple of steps backwards. I have learnt a lot about my body and about surgery recovery throughout my journey.

I had my surgery in August. I made a couple of posts on here while I was recovering from my surgery. My last post was about 5 or 6 weeks post-surgery. You’re probably all wondering if it was successful.
In short, I can give you the answer. The answer is yes. At this stage I can’t say that it has been 100% successful, as it is still too soon know, but I can confidently (and still to my surprise) say that I have had pain-free sex!
Let me share with you, in detail (because I know some of you are dying to know), my physical and sexual experience since being healed from the surgery.

I saw my surgeon about 2 months post-op. He said it looked like everything had healed great. I was so excited yet scared for him to touch and perform the true test on me. I thought that in this appointment I would find out the outcome. I built it up to this moment. I thought this would be the moment of truth. I thought that if I felt no pain when he touched me that it would signify that the surgery had worked, and that if I did feel pain, then shit, well maybe it hadn’t worked.

He felt around. And it still was painful and uncomfortable. I was very confused. I knew it was going to be a bit tender still (as full recovery can take some women up to 6 months), but I didn’t expect the pain/discomfort to still be at the level it was. He assured me that this was normal and that the scar tissue would take time to settle. Okay, so I’ve literally been bed-ridden for nearly two months recovering only to find out that I still don’t know if the surgery had been somewhat successful?!

I was still in the waiting game. I would just have to wait a few more weeks or even months to let my scar tissue calm down and for the area to heal fully (and find someone I felt comfortable enough with to take my vagina for a test ride). By this stage I could sit, walk etc with almost no pain (I never had pain for these activities before surgery anyway), but every now and then I would move in a certain way and still feel a little pinch or prick.
My surgeon gave me a dilator to use to help stretch me as well as getting the scar tissue familiar with light, safe and lubricated friction (and I guess it also would help me psychologically having something inside me and learning to relax my muscles). The dilator he gave me was the size of an average penis. How the hell would this fit inside me? I needed to started off with something really small, like the size of my finger, because by this stage I couldn’t fit more than one finger in without really stretching the opening. I felt a bit defeated and like things were going to progress really slowly, if at all.

So I jumped online and bought my own dilator set, which came with 6 sizes. I started using the two smallest ones. It was uncomfortable to use and a bit painful. Mum kept asking me what type of pain it was. She wanted to know if it was the same pain as vulvodynia pain or a different kind of pain, like pain of being stretched. And to be honest, I didn’t know. I forgot what the pain of vulvodynia was like. I guess my body had tried to erase those horrible memories. I didn’t want to be too hopeful and optimistic and assume it was more of a stretching sort of pain, but I was pretty sure it was. But would stretching really feel like this sort of pain? I wouldn’t know. All the times in the past that I had pushed through the pain and had sex I was in too much vulvodynia pain to really pay attention or notice the other types of pain that comes with stretching.

I was pretty lazy with the dilators. I was meant to use them everyday but I was still so emotional about the surgery and on bad days I would just feel helpless when I used the dilators. I felt like they weren’t helping, even only after using them a few times. I’m an impatient person so it was really hard to stay positive and persist.
Let’s fast forward a few weeks to late October. I met my now-boyfriend. Totally unexpected. I was happy to be single for a while and learn about my body and give my body a chance to fully heal and overcome my physical, emotionally, psychological and mental struggles. The same week that I accepted myself and that situation, and was prepared to work on myself and remain positive, was the same week that I met my boyfriend. Funny how life works.
Our chemistry and bond was instant. The second time I saw him I told him everything. I know that may sound crazy to some of you but I felt comfortable enough to tell him everything. I didn’t want to hide anything. I knew he would find out sooner or later so I bit the bullet and felt more comfortable that he knew it all upfront. I wanted him to be fully aware of the situation before he dated me. I had been through too much to not be upfront about it. It would have stressed me out to keep it to myself. It would have been a massive weight on my shoulders, and I couldn’t handle any more weight at this point in time.

He was so understanding about it all. Although it’s hard for people to truly understand about this condition and what the journey so far would have felt like, he said all the things that any woman would want to hear. We developed strong feelings pretty quickly and took things slow.

Fast forward to mid November, about 3 months after surgery. That was the first time he went inside me. It was the first time anyone had been inside me since the surgery. I can’t remember the experience too well, we weren’t sober but we weren’t smashed. We were both relaxed. I felt comfortable trying for sex. I do remember it being painful. I think he was inside me for no more than 2 minutes. I had to tell him to stop because of the pain. Again, it was hard for me to distinguish between vulvodynia pain and post-surgical (virginal) pain. I felt like some re-born virgin after surgery because, hopefully, I would be experiencing sex differently after surgery, in a pleasurable sense, yet with some pain at the start due to breaking in my vagina, sort of.

Surprisingly though, I wasn’t really sore afterwards (both straight after and the following couple of days). I remember falling asleep that night and thinking “Omg. Wow. My pussy isn’t throbbing like it did in the past after having sex and pushing through the pain. My pussy doesn’t have that feeling like I’ve been pounded by something huge that isn’t meant to be inside me”. So although the sex itself was painful, I was somewhat happy that I wasn’t dealing with pain after. I was a bit red and tender, and when I looked in the mirror I was definitely swollen, but I didn’t have that throbbing and sever irritation that I previously got.

I think it was 3 days later that we tried again. We were both pretty drunk, but it’s no surprise that we tried again. I get very flirty and sexually suggestive when I’ve been drinking. We did it for longer this time, about 10-15 minutes, and a couple of different positions. And LOTS of olive oil of course. As I always use. I remember feeling some pain, but again, I was never able to distinguish between the source of the pain. The next day I felt a little irritated and was red. And then the following day I developed an aggressive yeast infection. I was in such a shit mood. This was the worst irritation I had had in a long time. It lasted nearly two weeks and was SO uncomfortable and painful to walk, sit, move or do anything! I used three packets of thrush cream and had the oral pill of it too. It went away after a while but it was so annoying. It had such a big impact on me emotionally and psychologically. It was so hard to stay positive. I thought my vagina was just doomed and overly sensitive. I didn’t go to the doctors to check that it was a yeast infection. I just self-medicated with the cream, which is something I did often before the surgery. But I shouldn’t have done this. Because I developed another irritation literally a couple of weeks after that massive episode of thrush went away, only to discover that the second episode of thrush wasn’t actually thrush. My doctor did the swab and found no yeast. I can’t say I was too surprised. I had thrush-like symptoms except for the white discharge. I never really had the white discharge with any of my thrush episodes. As soon as I get some of the thrush symptoms I use the cream before it worsens. My symptoms are more painful than itchy, which makes me wonder what I have. My GP still doesn’t know what it is. It varies too, like sometimes it will be a mild case of it and then sometimes it will be full blown painful, red, stinging, burning around the entire vulva. Most of the time it’s very mild, but this one time after that second time we tried for sex it was unbearable.

The second episode of irritation finally cleared up. It is now early-mid December.

Fast forward to Christmas eve. We had sex. It was a bit painful. I nearly had to tell him to stop but I pushed myself a little. It wasn’t as painful as it use to be before the surgery. He went slow and gentle and finished inside me. I think we were only going for 5 minutes this time and did a couple of positions. I was really worried about developing an irritation the following day. I was not in the mood to be in discomfort and pain over Christmas and new year’s. And obviously when I’m irritated that puts me out of action for a week or more. And I didn’t want to be out of action after every time trying to have sex with my boyfriend! I couldn’t live like that.

But, surprisingly, I was barely irritated. My irritation was on a level 2 out of 10 and it wasn’t consuming my mind. It was so mild that I could enjoy xmas day without thinking about it much at all. And on boxing day it was less irritated.
By 30th December I was feeling back to normal, normal enough to have sex again! This time it was still a bit painful, but it was less painful than the time before. No irritation the next day!

And on the 2nd Jan, we had sex again. We did it in the morning, both sober. I think this was the first time I’ve ever had sex completely sober. The beginning was painful. As he entered me I nearly told him to stop and that I couldn’t do it this time. But he looked at me and said that everything was going to be okay, and to relax and ease into it. I nodded and took a deep breath in and out. He slowly entered me and thrusted slowly. It was a bit painful for the first minute or so, but then the pain slowly went away. And for the first time ever, I felt his dick inside and could focus on how it felt inside me rather than worry about the pain. I could feel him rubbing my g spot all around. It wasn’t a feeling a pleasure at this stage, but just feeling a dick inside me. I was finally having sex and was able to be aware of how it felt rather than just feeling pain. I could feel something other than pain! He was only inside me for a couple of minutes as he came quickly this time. For the first time, ever, I was actually hoping he was inside me for longer! It was a new feeling. I wanted to explore it. I wanted to see if I could learn to enjoy it.

The rest of that day I felt a tingle inside me. A good tingle. I couldn’t wait to try it again. I was excited to see what my body was now capable of and the possibility of me actually enjoying sex was now on the cards. No irritation at all. Just a nice tingle. Almost like I had been “awakened”.

The next day, we had sex again. It was painful when he first entered me, but about half a minute into it the pain faded away, and I was experiencing that same sensation of him inside me. Then after a couple of minutes I actually wanted him to go faster. What was happening? Was this real?

He finished pretty quick. I didn’t want him to finish!! I wanted to explore what it may feel like to enjoy sex!!
Then, a few days later, I did something sort of silly. We were at a friend’s house, both very drunk, and he wanted to go upstairs for a quickie. I felt confident with my progress and I wanted to show him and myself that I could be that playful and spontaneous sex kitten girlfriend. I had never been able to be this sort of girl/girlfriend before and now that I could have sex I thought why not.

Well, because he was very drunk, he wasn’t fully hard and couldn’t finish. We were having sex for an hour in all sorts of positions. Literally an hour. Yep, you read that right. I was very drunk myself and if I was wiser I wouldn’t have bothered. Why do that after the progress I’ve made? I guess I can’t beat myself up about it. It wasn’t too painful, but at the same time, I was drunk, so I wouldn’t have been able to sense the pain too well. Once I sobered up I was fearing the damage I may have done. Could I have done any damage? I guess I wasn’t the only person on the planet to have sex for an hour long, but still, it’s not normal to be going for that long, and it’s way too soon I think for me to be doing that.

That hour-long sex session was on Sunday (a few days ago). My vagina wasn’t throbbing after but it definitely had a sore feeling, like I had been pounded. He was going really hard and fast the whole time. I guess any woman with a normal vagina would be sore after a long session like that. So, any soreness was normal I guess. I used plenty of olive oil which would have helped. I had a shower right afterwards and looked at it in a mirror meticulously. It was red, but again, normal considering what I had just done. The scars looked a bit angry and I was dreading how I would bounce back from this. I was fearing a full-blown irritation like that time in November. But so far, it’s only been about a level 3 out of 10. The feeling/irritation I have right now feels like I’ve been cut slightly. Like where the opening is and where the scars are it stings a little and is a bit red. It’s not too different to the irritation I had some other time after sex. The rest of the vulva looks pretty normal. I stuck a finger in to see and it’s still tender. I think I just have to give it a few days to settle down. It would be almost impossible to have done any permanent damage. But I’m an anxious person so I’ll stress about the worst-case scenario and think all sorts of things. Set-backs like this aren’t good for my mental attitude about the whole situation. I’ve now given myself something to stress about. It seems to be a common theme with me – I’ll make some sort of progress and then go backwards or something will come up that really tests me. In times like this I have to stay positive and have faith that my vagina now is a different vagina than the vagina I had before the surgery. I have to remember and have faith that the vagina I have now is strong and able – that it now has thicker and less painful skin and can cope this sexual activity and friction.
One step at a time.

I will keep you all updated. Feel free to personal message me about anything.

jjr23

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Re: Surgery Success - Still early days, but going well so far!

Post  sj17 on Tue Jul 04, 2017 10:57 pm

Hiya! Was just wondering who did you have your surgery with? Also was your pain generalised or provoked and was the surgery a complete or partial vestibulectomy?

Thanks,

Sarah

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Re: Surgery Success - Still early days, but going well so far!

Post  mary jane on Wed Jul 05, 2017 5:31 pm

sarahjane1332343 wrote:Hiya! Was just wondering who did you have your surgery with? Also was your pain generalised or provoked and was the surgery a complete or partial vestibulectomy?

Thanks,

Sarah

you're not supposed to have surgery for generalised pain, it would only blow up into some neuralgia type pain
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mary jane

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Re: Surgery Success - Still early days, but going well so far!

Post  sj17 on Wed Jul 05, 2017 5:40 pm

I think it varies from person to person and the extent of what kind of pain you have. I know a few people with generalised pain who have had surgery and it has worked, even people on here who don't just have provoked have had surgery and it has been a success. At the end of the day, if you're in constant pain, what do you have left to lose with trying surgery if you have used up all your other options? If a consultant encourages you to have surgery and thinks it is more likely to help than not then you would definitely take the opportunity

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Re: Surgery Success - Still early days, but going well so far!

Post  jjr23 on Sun Jul 16, 2017 12:53 pm

sarahjane1332343 wrote:Hiya! Was just wondering who did you have your surgery with? Also was your pain generalised or provoked and was the surgery a complete or partial vestibulectomy?

Thanks,

Sarah

Hi Sarah,

I had primary provoked vulvodynia. My surgery was a full vestibulectomy I believe, where my entire vestibule was removed (or as much as was possible to remove).

My surgeon was Ross Pagano. Excellent surgeon, really knows his stuff.

jjr23

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Re: Surgery Success - Still early days, but going well so far!

Post  sj17 on Sun Jul 16, 2017 8:42 pm

What does primary mean sorry? Is that in the UK or abroad?

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Re: Surgery Success - Still early days, but going well so far!

Post  Hopeitworks on Thu Aug 31, 2017 8:38 pm

Thank you for sharing your recovery! I'm 4 weeks post op with barley any pain! I'm so scares to have sex, but really want to.

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Re: Surgery Success - Still early days, but going well so far!

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