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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 …

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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, …

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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 …

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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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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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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 …

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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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I got the surgery!

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I got the surgery!

Post  tandaschroeder on Tue Jul 16, 2013 9:05 pm

Hey everyone! I just want to say that I was where each of you are right now. I wanted to give up. I cried every single day from the pain. I couldn't even be intimate with my husband.

3 weeks ago, I got the surgery. I can already tell a massive difference. I can't have sex for a few more months but wanted to ask those who have had surgery how big of a success it was & if penetration worked!

As goes for my doctor, he is amazing. His name is Dr. Watts. He's located in Salt Lake City, utah. Women from all over the country fly to get he surgery done. He does a ton of them, & even does them in his office to cut costs for those who can't afford it. He's so sensitive e to your needs & cares about helping you get better.

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surgery?

Post  Jenn89 on Mon Aug 19, 2013 1:00 am

I've seen a few posts about a "surgery." My doctors have not recommended nor mentioned any sort of surgery. The only surgery I've had was a hymenectomy and that was a trigger for my vulvodynia. What is this all about? Can someone explain it? Thanks!

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Re: I got the surgery!

Post  Alana3 on Mon Aug 19, 2013 1:31 am

Yes! I got it! They basically remove your vestibule hence "vestibulectomy". They take away the painful parts. Unfortunately, its only recommended for certain cases. Usually if its provoked localized vulvodynia. Its usually only done as a last resort they will try other treatments before they do that on you. It took me 5 years and a lot of frustration before it was even an option and even then they made me do other treatments first before I said I've had enough. Where are you from? Smile

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Re: I got the surgery!

Post  Jenn89 on Mon Aug 19, 2013 1:34 am

I'm from Mass. My doctors have never talked about ANY sort of surgery. What does provoked localized vulvodynia mean? I know it might seem kind of dumb, but I've basically been in denial... doing the therapies and such, but not LEARNING about the condition, so I don't understand some of the things people are posting about

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Re: I got the surgery!

Post  Alana3 on Mon Aug 19, 2013 1:38 am

It means that it is painful when touched (provoked) and in one spot (localized). There is general unprovoked which is pretty much everywhere and all the time pain from what I understand. Have you tried going to Dr. Goldstein? Hes in New York and supposedly really good at what he does. I felt lost too when I first got diagnosed but you learn quick for your own sanity really.

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Re: I got the surgery!

Post  Jenn89 on Mon Aug 19, 2013 1:42 am

Alana3 wrote:It means that it is painful when touched (provoked) and in one spot (localized). There is general unprovoked which is pretty much everywhere and all the time pain from what I understand. Have you tried going to Dr. Goldstein? Hes in New York and supposedly really good at what he does. I felt lost too when I first got diagnosed but you learn quick for your own sanity really.
So I suppose I would fall under the provoked localized category. I can pinpoint pretty much exactly where it hurts, but it only hurts if I'm sitting funny - which can put pressure on the spots, or if it's touched.

I have not even heard of Dr. Goldstein.. I see a specialist and a physical therapist right now, but I feel like I've tried so many methods and none of them seem to be working. My doctor insists I try one specific PT, but she's really far from me, and does not accept insurance. I'm 23, and I don't have a very good paying job, so I can't afford it..

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Re: I got the surgery!

Post  Alana3 on Mon Aug 19, 2013 1:57 am

Hmmmm yeah I'm 27 and my parents help me with medical it's just awful and I have endometriosis too yuck. I wouldn't go straight toward surgery until you've literally tried everything. My pain was thank god only with sex but it was awful and traumatic. No treatments helped until they did surgery but its a lot to think about. I will say it was easy but it was mentally taxing if that makes sense.

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Re: I got the surgery!

Post  Jenn89 on Mon Aug 19, 2013 2:00 am

makes sense. Just the thought of it is nerve wracking! I'm looking it up now though, and I'm not good with anatomy, but it looks like what they cut out, isn't where I feel my pain. But I'm not sure. I'll bring it up to my PT next week anyway just so it's out there and to see what she thinks.

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Re: I got the surgery!

Post  Alana3 on Mon Aug 19, 2013 2:02 am

Where's your pain?

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Re: I got the surgery!

Post  Jenn89 on Mon Aug 19, 2013 2:11 am

I don't know how to explain it... It's right at the opening towards the bottom (or I suppose it would be the back..) so it hurts sometimes when I sit.. but more-so when something is touching it like a tampon, or my dilators. It seems like they take out a bunch of skin that is NOT painful for me.

I suppose if you picture a clock, I feel pain from 8-4 right at my opening.

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Re: I got the surgery!

Post  Jenn89 on Mon Aug 19, 2013 2:14 am

It looks like they take out a lot of the tissue around the opening. Like they take away from the labia almost? Like I said, I'm horrible with anatomy so I don't really know what I'm saying, but my pain is just RIGHT in that circle.. and they take out all this extra surrounding skin.

I was going to post a jpg from Paint to show what I meant, but I can't get it to work.

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Re: I got the surgery!

Post  Alana3 on Mon Aug 19, 2013 2:38 am

No they take out the vestibule not the labia you can hardly tell anything was done

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Re: I got the surgery!

Post  Jenn89 on Mon Aug 19, 2013 3:10 am

Hmm I don't know. I'm gonna mention it to my physical therapist at my next appointment just to see what she says. I'm not looking for a definite answer, but it would be nice to just communicate about it with her to see what she thinks.

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Re: I got the surgery!

Post  Alana3 on Mon Aug 19, 2013 12:43 pm

Yup you never know

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Re: I got the surgery!

Post  tandaschroeder on Mon Aug 19, 2013 9:46 pm

Jenn89 wrote:I don't know how to explain it... It's right at the opening towards the bottom (or I suppose it would be the back..) so it hurts sometimes when I sit.. but more-so when something is touching it like a tampon, or my dilators. It seems like they take out a bunch of skin that is NOT painful for me.

I suppose if you picture a clock, I feel pain from 8-4 right at my opening.
Sorry girls! I just barely saw that you replied to my original comment. I just want you to know you're not alone. That's for sure. But on the bright side, the way you're explaining things is exactly what I had. I had the pain for a year and a half before I finally got fixed. I saw many doctors and all of them told me I didn't need any kind of surgery because, well, most doctors don't know a lot about it. My doctor said he had people contact him from all around the country. He does many surgeries and truly is AMAZING. He's located in Salt Lake City, Utah. Like Alana said, I would definitely try everything before you jump into surgery. I tried literally everything and nothing worked until I got surgery. It was the best decision I ever made. And if I could give one thing of advice, it would be to not worry about the cost. Because if your condition is as bad as mine was, I would literally be paying it off the rest of my life to be pain-free. If you have any questions, please feel free to ask!!

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Re: I got the surgery!

Post  Jenn89 on Mon Aug 19, 2013 10:11 pm

What kind of things did you try before choosing the surgery? I feel like I've tried it all. She has no new recommendations for me when I go in there anymore. She just tells me to keep using the halobetasol and lidocaine or to go see this very expensive PT that's far away from me

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Re: I got the surgery!

Post  tandaschroeder on Mon Aug 19, 2013 10:28 pm

Jenn89 wrote:What kind of things did you try before choosing the surgery? I feel like I've tried it all. She has no new recommendations for me when I go in there anymore. She just tells me to keep using the halobetasol and lidocaine or to go see this very expensive PT that's far away from me
I tried all types of estrogen cream, physical therapy, exercises, and a lot of medications. There aren't many doctors who know what they're talking about & it sort of sounds like your doctor is one of those. I can give you my doctor's phone # and maybe you can talk to his nurse and tell them you live in another state but have heard things about him. He might have options. But it's hard when he has to SEE you. It all comes down to what you're willing to do to fix it. Because it can be expensive, it can cost an arm & a leg, but if it's worth it to become completely pain-free to you, then you should do it!

The doc is Dr Watts and is phone number is (801) 268-6811. He also has a fabulous nurse named Brooke who talked to me about it on the phone a few times.

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Re: I got the surgery!

Post  Jenn89 on Mon Aug 19, 2013 10:44 pm

Hmm maybe I'll try it. Everyone here says my doc & PT are great... But I've had no results in over 5 years. Close to 7

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Re: I got the surgery!

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