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Looking for a friend..... and new problems

Sat Jan 06, 2018 11:38 pm by infinitelywondering

Hi everyone,

I hope you're doing well.

I hate to say this, but I feel beaten down and terribly alone. I had a vestibulectomy surgery about 6 months ago and I was absolutely praying it would work. It didn't.

6 months later and here I am, sitting on my bedroom floor crying my eyes out because I know I'll never be able to have painfree sex. I don't know what to do and just need a friend Sad



Comments: 6

So frustrating!!

Thu Jan 04, 2018 1:15 am by Hannah77

Well I'm back in pain after 7 years of pain free days.
I was diagnosed with vulvodynia when I was 17. I suffered for three years with horrible burning all day, painful sex with my boyfriend and just pure misery Sad I went into a spontaneous remission when I was 20. I'm still not sure how the pain stopped but all the sudden I could go an entire day without thinking of my vagina, sex started to …

Comments: 3

Looking for suggestions or encouragement

Sat Jan 13, 2018 12:10 am by ryn207

Hi there. I'm 25 and have been dealing with this for over a year and a half and I'm really starting to lose hope this will ever stop.

In July of 2016 I had a yeast infection. When Monistat didn't work I went to my gynecologist who prescribed Diflucan. When the itching didn't stop she retested me and found that my yeast infection was gone, but I now had a bacterial infection. After taking the …

Comments: 4

Amitriptyline given for vulvodyina pain

Tue Oct 24, 2017 2:46 pm by katycrawford

Hi there,

After years of being misdiagnosed etc as most women have on this forum I have finally been diagnosed with vulvodynia (yay) and have been given the lowest dose of an antidepressant called Amitriptyline. Has anyone been on this before and has any positive (or negative) news to give me? Im feeling down already and I've only been taking it for a few days, I don't have much hope of it …

Comments: 11

7 years later and life looks bleak :(

Wed Dec 06, 2017 2:50 am by RainyShay77

So 7 years ago I had a case of BV...the antibiotic caused a horrible yeast infection which took 5 months to 'get rid of'. During this time I had allergic reactions to 2 of the yeast infection creams which magnified the pain. Over the past 7 years I've tried multiple rounds of physical therapy (they only slightly helped), chiropractic, nerve blocks, medications to target nerve pain (amitriptyline, …

Comments: 7

Newly diagnosed - and prescribed amitriptyline cream/physio/psychology

Sun Jan 07, 2018 9:38 am by sophiarp

Hi everyone,

I'm so happy to have stumbled across this forum. I have just been diagnosed and am really struggling emotionally. It's nice to find this forum and feel a little less alone.

I've been prescribed amitriptyline cream. Has anyone had success with this? I was happy to have avoided the amitriptyline tablets. I'm also participating in physio and have been told I need to see a psychologist …

Comments: 2

Somebody please help me...

Fri Nov 24, 2017 8:05 am by Andlag

Hey everyone,

since I started being sexually active i often experienced burning in my vagina which was often worse during sex /around the time of my period or when using lubricants. I was never able to use tampons because the one time i tried putting them in it felt like acid was poured on my skin. Fast forward to 2 months ago when I got a UTI and an allergic reaction in my vagina. I thought it …

Comments: 11

Amtriptyline, baclofen, gabapentin cream for provoked vestibuldynia

Mon Nov 20, 2017 8:15 pm by WVR00

Hello,
Has anyone had success with this cream in helping their vulvodynia? How long has it taken to help? I’ve had some success with it, but not completely better. I’ve been on it for a month. I️ was hoping to hear from some ladies who have had major success with this cream. I’m hoping for some encouragement here. This condition is so frustrating. I’m lucky enough to have access to two …

Comments: 1

New diagnosis, any advice whilst I wait for a specialist

Wed Oct 25, 2017 1:47 pm by Julesyjules

Hi,

I'm new here and wanted to ask for some advice whilst I wait to see a specialist nurse.

After urinary problems which lasted 7 weeks, I finally saw a urologist, who on examination discovered significant inflammation and called in a gynaecologist, who diagnosed vestibulitis. They referred me to a nurse who specialises in vulvar skin issues. That was 5 weeks ago, and I'm still waiting for the …

Comments: 1


Vestibulitiis surgery

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Vestibulitiis surgery

Post  Coco23 on Wed May 03, 2017 12:31 pm

Hey girls.

I am 23 years old and I've been suffering from Vesti from the age of 19(the first time I have tried to have sex).
As long as I remember I never fingered myself and never used tampons due to pain and general fear.

A month and a half ago, on 16.3, I had a vestibulitis surgery after 4 years of suffering.
I went to my doctor twice after the surgery..last time was 4 days ago and he told me I can have sex now and that it looks great.

So I tried.

I still have pain in the vulvar area, a bit less but similar type of pain of what I had before.
In addition, the Veginismus is now worse than what I had before. Probably because I expected it to be painless and it didnt happen.

I am really sad and hopeless.
I dont know what to do anymore...
I thought I should do a second surgery with another doctor- but I read somewhere that it might take time to heal completely.

I am now 1.5 months after my surgery.. touching my vulvar area really carefully with my fingers and it is painful.. do u think its an unsuccessful surgery and I should redo one or is it just a matter of time?

* The surgery was done on the bottom area of the vulvar only since that was my problem.


Thank you very much for your time... hope to hear from you soon

Coco23

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Healing...

Post  Gill on Sat May 06, 2017 7:35 pm

Hi Coco,

I don't know whether you should have further surgery, but I can tell you what my surgeon told me!

I didn't have my follow-up with my surgeon until 3 months post-surgery, and she said the pain I get might still decrease further. I did have massive improvement in the area that was removed, but still significant pain in surrounding areas, which she said could be because of the way the skin in the vestibule heals, which can take longer than other places.

I am seriously considering further surgery, but will wait a few more months before going for it.

Gill

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Re: Vestibulitiis surgery

Post  Coco23 on Sat May 06, 2017 11:17 pm

Hey Gill thanks for the reply.
In my case its not only the surrending area but also when I try a finger inside of the vagina..it is painful jist like the surrending area and a similar pain to what I had before. Maybe worse. My doctor told me it looks good that I can already have sex..and I tries few times but it only gets worse and burning after everytime.

Do you also have pain if you insert a finger or just outside of it?

Coco23

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Re: Vestibulitiis surgery

Post  Gill on Sun May 07, 2017 12:06 am

Hey there, I'm not sure what you mean when you say the surrounding area as opposed to inside. To me it feels like pain on the inside; vestibule means hallway, like entrance, and that's what it's like. It used to feel like I was trying to push a flaming hot poker in there. Now (3+ months after surgery), its more like a heated needle poking in the specific places that still hurt. I have never had external pain, like on the labia, etc, like some ppl get. My drs held up a mirror and showed me what they were poking to see if it hurt. If your doctor didn't show you what the different bits were they were taking out, that wasn't very helpful for you.

When I manage to get anything through the entrance and inside, the bit that's properly inside doesn't hurt, but the entrance still hurts.

It still hasn't been very long since your surgery, so you should probably give it a couple of months more at least, and try to get a mirror down there to work out what's happening. I am planning to wait at least 6 months after surgery before deciding whether it's worked or not. People say it takes a year to fully heal.

You mentioned that you now have vaginismus; you'll know you need to treat that as well. I suggest you find a good psychosexual counsellor and/or Physio/biofeedback to help with that if you haven't already.

Gill

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Re: Vestibulitiis surgery

Post  flick001 on Mon May 22, 2017 10:19 am

Hi guys,

I was wondering from your posts you mention the possibility of having a further surgery - what exactly is this? the same sort of thing as the first vestibulectomy?

I have just had the surgery and up to week 4 recovery. I feel like the pain is a lot better but not fully gone - i can't tell much though obviously as its only been 3 weeks. But just wondering if you know what further surgery could be an option if the nerve pain doesn't fully resolve?

Thanks

flick001

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Re: Vestibulitiis surgery

Post  Gill on Mon May 22, 2017 4:18 pm

Hi, when I wrote about further surgery, it's because my dr only removed the tissue between 9 and 3 on the clock face. The other half of the circle that wasn't touched, and that's where my remaining pain is, so I'm exploring whether taking more out will improve things further. A couple of people on the Facebook group 'Vestibulectomy Surgery and Vestibulodynia Support Group' mention having a partial vestibulectomy followed by a total. My surgeon didn't want to remove the top because she said there are really bad things that can happen, like fistulas. It might be worth asking ppl who've already had both what they know about it.

Gill

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Re: Vestibulitiis surgery

Post  sj17 on Tue Jul 04, 2017 10:55 pm

Hi Gill,

Who did you have your surgery with if you don't mind me asking?

sj17

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Re: Vestibulitiis surgery

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