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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 …

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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 …

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Vulvodynia help

Tue Nov 14, 2017 4:27 pm by Katiej

Hi guys new here and newly diagnosed. So I had bv and then after alot of antibiotics and home remedies I still continued to have weird symptoms despite swabs being negative. Two seperate gynes have told me I have vulvodynia as a result of the area being overwhelmed. So first gave me lidocaine which xidnt do much. No I am on amitriptyline for the past 5 days. Seems to be kicking in a little (im a …

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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: 4

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 …

Comments: 5

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 …

Comments: 4

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 …

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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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