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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


Not sure what's wrong with me, but....

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Not sure what's wrong with me, but....

Post  haybay on Tue Mar 31, 2015 8:15 am

I'm so glad to have found a group of women experiencing similar symptoms! My symptoms have been progressing for at least five years now. I'm 27 years old, and I'm finding that I'm becoming more and more insecure and depressed as a result of my symptoms, as well as the uncertainty of any diagnosis. Some suggestions have been made by three doctors, but no one has been able to "cure" me or provide me with any guidance to reduce my discomfort.

My case, like many others I've read, is not simply explained. There was no "start date" and old symptoms have manifested into new ones. However, I have noted some variances in my own experience that may or may not fall under the broad vuvlodynia umbrella.

I'm very interested to read more from the members of this forum so that I can be better prepared to choose my next doctor, and more equipped to ask and answer questions when I have my next opportunity.
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Re: Not sure what's wrong with me, but....

Post  x_chelss@live.com on Thu Apr 02, 2015 11:23 pm

You probably haven't found a 'cure' yet because there isn't really one that works for everyone. Most woman have to try a whole range of treatments before finding any relief. I tried 4 different treatments and then ended up having surgery (vestibulectomy). The surgery has definitely helped relieve some symptoms.
Good luck x

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Re: Not sure what's wrong with me, but....

Post  haybay on Fri Apr 03, 2015 2:26 am

What type of symptoms is the surgery intended to relieve?
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Re: Not sure what's wrong with me, but....

Post  sailor_moon on Fri Apr 03, 2015 10:32 am

I'd like to know the answer to the above question too^ the thought of having to have a vestibulectomy really really scares me....On what the area looks like afterwards appearance - wise. ..especially if the surgery is unsuccessful.
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Re: Not sure what's wrong with me, but....

Post  x_chelss@live.com on Fri Apr 03, 2015 3:08 pm

Before the surgery I had constant burning, stinging, like someone was pouring acid into my vagina. I couldn't have pain free sex, I couldnt sit normally or wear tight clothing. I couldn't walk for a very long time which made my job very difficult.
Now I've had the surgery all the symptoms above have vanished really I never have the burning from my vagina hole and sex is getting more and more easier and less painful. I can walk for long periods of times and I can sit normally again.

To the woman who asked about the appearance off the vagina after the surgery, it honestly doesn't look all that different if anything I prefer the way it looks now to the saying used to. They cut away my hymen and the tissue from inside my vagina cut down towards my anus (modified fenton) to make my vagina wider and injected Botox to stop my pelvic floor muscle from spazuming. I'm 9 weeks post op and I do still have red sore tissue from where the stitches were but it takes a year to fully heal from a vestibulectomy. My every day life is so much better than what it was, when I had the surgery I was warned it may not work and I'd loose lubrication, in my eyes it has worked im not 100% at the moment but I'm a lot better than what I was this time last year.
I have lost lubrication so without lube sex won't happen but I'd rather use lube than be in pain for the rest of my life. I only had a parcial vestibulectomy so only half off my vestibule was removed, if you have a full vestibulectomy the WHOLE of your vestibule is removed. I only have half off my labia minor lips as the bottom half was cut away so the tissue from the inside could be sown together.

It took me a year and a half and 4 doctors to finally get the surgery but it was by far the best decision for me, and even if it never worked I'd still do it again because the recovery wasn't that bad. I was back at work after 2 weeks and they told me I'd need 6 weeks off work! I still have irritation with urination and tenderness on my anterior vagina wall but I think that's related to my bladder and NOT vulvodynia.

Private message me if you have anymore questions x

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Re: Not sure what's wrong with me, but....

Post  haybay on Fri Apr 03, 2015 4:30 pm

Thank you for the quick, detailed and well explained response. I do not think my symptoms would benefit from any kind of surgery unless they took off my whole top layer of skin around my labia majora.
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Re: Not sure what's wrong with me, but....

Post  x_chelss@live.com on Sat Apr 04, 2015 9:14 am

A full vestibulectomy would remove the area you are talking about. The vestibulectomy I had only removed the painful tissue, I do still have some painful tissue but nothing compared to what I was experiencing before. And I'm hoping that it's just scar tissue which is causing discomfort x

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Re: Not sure what's wrong with me, but....

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