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Looking for a friend IRL; LA/OC

Tue Jul 18, 2017 2:51 am by crypticcalico

Hello!

I am hoping to find a friend in the LA/OC area that I can meet up with in person. I live in Long Beach, California and I am willing to drive a bit to meet. The only person that I've told about this is my doctor(s) and someone who couldn't wrap their brain around it. It would be nice to be able to talk to someone else who understands.

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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 …

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Owner of vulvodyniSuppoet.com

Wed Jul 19, 2017 10:28 pm by LaurenVV

Hi, I started vulvodyniasupport.com at the age of 28.
I was a leader when there was no help, no forums etc.

As I went on my path, I found acupuncture, herbs and time helped me recover.
Most never do.

I met a wonderful woman named Hanna. She was a patient and became a support leader. She lived in FLoroda.

I have moved on from the support world and found a career that allowed
Me to bring my …

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anyone from southern california in here?

Tue Jul 12, 2011 6:43 pm by Melissa777

Hi Im just wondering if anyone here is from so cal- USA
I am in san diego- but from LA!!!

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Anyone else try Cold Laser therapy/ Low Level Laser Therapy for their vestibulodynia?

Tue Jul 04, 2017 9:01 am by Tired89

Hello everyone. It's been quite a long time since I've posted. I've been extremely depressed and bottling it all up. I've been seeing a pelvic floor therapist (it's only been 4 visits) for my provoked vestibulodynia and the only reason she can get inside of me to do myofascial release and to use the dilators is because I use BLT (benzocaine, lidocaine, tetracaine) ointment on my vestibule prior …

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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: 1

New member

Sat Mar 18, 2017 7:37 pm by Lisa1627

Hi ladies. I am new to the forum. I have had what I think is vulvodynia caused from hsv 2. So not only do I have the burning vag but the constant feeling of being contagious. I can honestly say that I hate my life and myself right now. There are days when I think I would rather be dead. I tried the amitryptline and it helped but if it's only making my brain think I don't have pain then it's …

Comments: 12

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: 3

Recovered from Vulvodynia

Thu May 04, 2017 9:42 pm by chancesunny

Hey everyone,

Im a new member on this forum and wanted to share my story so I can help anyone who is feeling helpless. Maybe what worked for me can work for you. I'll try to make this short so you can go get better!

I had vulvodynia for about 3-4 years. In the beginning, it started with pain that I thought was just a yeast infection and then I thought it was a urinary tract infection or …

Comments: 2


The perfect doctor.

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The perfect doctor.

Post  Jordanlynnea on Sun Apr 28, 2013 11:46 pm

I am 19 years old and I have been suffering from vulvodynia for the last 9 months. It has been an uphill battle. I am beyond lucky to have an amazing man who is supportive and has been my rock. I understand the physical and emotional strain the condition has on you and your relationship.

It all started with what I thought was a normal UTI. I treated it with antibiotics and it went away for a while and then returned 2 more times couple with an intense yeast infection. So I thought. After about 15-20 appointments with my obgyn I was beginning to lose help and feel hopeless. The only treatment I was given was a steroid cream. When my condition worsened I was told to back off and return in 3 weeks (repeatedly). I finally had enough and went to my primary dr who immediately recommended me to a specialist.

The moment I talked to Dr. Georgine Lamvu I knew my life had changed. Dr. Lamvu spent four hours with me that day. She listened to my story whole heartedly and did a THOROUGH exam. After the exam, Dr. Lamvu took her time in analyzing the results. She returned to explain to me the anatomy of the vagina and what she figured was the problem.

First off, it's my extreme displeasure to say that most obgyn's can't do much besides delivering a baby. My obgyn was wrong in prescribing steroid creams - which thin out your skin and cause irritation- and collecting my money. Dr. Lamvu explained that the vagina and the bladder are interconnected. If something is wrong with one it can cause problems with the other. I have a cystoscopy scheduled for one week followed by other tests. In the mean time she prescribed me a cream that seals the skin and allows it to re-grow. Once we determine the underlying cause I will start physical therapy to correct the muscle problems (which cause strain on the bladder causing pain and problems with the bowels). Dr. Lamvu promised me that she would fix this and I would return to a normal life. I believe her because she sees 25-30 patients a day with the same condition you and I suffer from.

She wrote out all of her notes for me with CLEAR instructions and a plan of action.

My biggest advice is to STOP listening to dr's telling you that you're crazy and nothing is wrong. I am 1 in 14,000,000 who gets to a specialist in time. I am one of the lucky ones. Next, STOP having sex before you permanently damage your body. Please, DO NOT GIVE UP HOPE.

The past week has felt like I have been reborn as a new person with hope and promising future of health and happiness.

There are only TWELVE doctors like Dr. Lamvu in the Unites States. Dr. Lamvu is located at Florida Hospital in Orlando, Fl on North Orange Ave. Call, make an appointment, and change your life for the better.


I have long road ahead but it is a road that leads to being free from this awful condition.

I wish all of you luck and hope that you make this first step in calling Dr. Lamvu to recovery.

Jordanlynnea

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Re: The perfect doctor.

Post  Alana3 on Mon Apr 29, 2013 1:33 am

Ugh I went to her didn't have a good experience she diagnosed me with stuff I didn't even have. But im glad she helped you! Are you from Florida?

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Re: The perfect doctor.

Post  Jordanlynnea on Mon Apr 29, 2013 5:08 am

Yes I am. She's been great.

Jordanlynnea

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Re: The perfect doctor.

Post  Jordanlynnea on Mon Apr 29, 2013 5:10 am

I think she moved away from Lockhaven gynecology to Fl hospital which seems to be a big difference

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Re: The perfect doctor.

Post  Alana3 on Mon Apr 29, 2013 10:26 am

Yeah I wouldn't go back to her after what she did to me and said to me but I found a doc down in west palm who works for me she wanted to.do a potassium challenge test and a laprascropy for endo when those weren't even by symptoms than treated me like I had v when that was never mentioned weird but like I said if she's helping you that's good

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Re: The perfect doctor.

Post  Jordanlynnea on Tue Apr 30, 2013 2:34 am

Yeah, I have vulvodynia so she's doin the right steps.

Jordanlynnea

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Re: The perfect doctor.

Post  Alana3 on Tue Apr 30, 2013 10:22 am

Yeah I do too and she mis diagnosed me twice and told me I needed these horrible surgeries when in fact come to find our she was treating me for vulvodynia. Sorta seemed like she wanted money and than pretended not to know anyone down here who had experience. Which was a lie cuz they knew each other.

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Re: The perfect doctor.

Post  Alana3 on Tue Apr 30, 2013 12:13 pm

Why are you getting a cystoscopy for vulvodynia? Or do you have ic too?

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Re: The perfect doctor.

Post  Jordanlynnea on Tue Apr 30, 2013 5:25 pm

Cystoscopy first then physical therapy. Ill be sure to keep an eye out any money sucking situations. I went through that with my last obgyn. What is the new doctor doing differently for you? And is it less expensive?

Jordanlynnea

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Re: The perfect doctor.

Post  Alana3 on Tue Apr 30, 2013 6:03 pm

I'm not trying to trash her, if she's working for you that's awesome! But I don't understand why she is sending you for a cystoscopy if you don't have IC or bladder problems? This sounds eerily similar to my experience with her. This was my story with her:

My physical therapist sent me to her, so I went thinking she would be awesome and at first I thought she was. She did the qtip test and I almost passed out on contact. She spent a lot of time with me blah blah blah same thing as you. Than she told me that I maybe had IC and endometriosis. She explained the same thing to you as she did for me with the anatomy and all. She wanted me to come back for the IC challenge test where they shoot potassium into your bladder and you rate the pain via catheterization (this test is deemed as unnecessary and barbaric she never once mentioned cystoscopy) and than she wanted me to do a laprascopy. She sent me home with muscle relaxers, an estrogen compund with lidocaine that she had me put on my vulva and Naproxen. None of this made any sense to me so I went on-line and did my research. The stuff she sent me home with was for treatment of vulvodynia which I had the symptoms for, but it was never mentioned. The endo and IC I had never complained about one symptom (except the pain with sex, but OK that's a lot of conditions). So I just felt like she was after me for money and that after all those things (painful things mind you) came back she would be like oh hey guess what you have vulvodynia. So I cancelled all my appointments with her.

Fast forward 6 or so months later later and thousands of prescriptions and useless doctors later, I found Dr. Trabin in West Palm Beach. The initial appointment was over 300 (but it gets cut in half after you go to him after). He looked at my vulva and was like I can SEE (funny huh?) exactly what is ailing you. So he took pictures of it and showed me where my problems were. From here, he said you have 3 treatment options. 1. I can write you a topical compund 2. Physical therapy (I was already doing that) and 3. surgery. We decided to continue with the compound and physical therapy. He took a swab and found out that I had strep too so he wrote me a prescription for that. For 6 weeks everything was great with the compound and then it started hurting again. I decided to proceed with surgery- a partial vestibulectomy. I will tell you I was terrified and second guessed myself up until the second they knocked me out. But NOW I am so thankful I did it as I can be penetrated with little to no pain. The only pain I really have is muscular, which my physical therapist is helping me with. But I haven't had to go back for ANY pain (except a yeast infection, but come on normal people get those too) since my surgery. The recovery and pain from surgery wasn't nearly as horrible as I imagined either.

Is it less expensive? After the surgery (although it was covered by insurance) I had spent about 30K with him. I don't care about the expense though he knows his stuff and I'm like a new person with more confidence in myself because my vagina is functioning. I don't remember what Lamvu's initial appointment was (or how much), but Dr. Trabin spent about 2 hours with my mom and me showing me other people's normal and vv vaginas and mine and where exactly MY particular problem was. I just felt like it was a completely different experience. Please PLEASE find out why she is doing a cystoscopy on you before you do it. From personal experience, unless you have IC or are suspected to have it, that isn't going to do anything for your vulvodynia. Physical therapy I totally agree with I do it it helped me, but my saving grace was the surgery (and I am not in any way advocating that for you, just saying what happened for me). There's another girl on here who also goes to Lamvu, maybe you could compare notes with her too.

Another thing I didn't like was that she claimed she didn't know any specialists in my area, when in fact, Trabin and Lamvu go to conferences all the time together. That was weird to me. Let me know if I can answer any other questions for you, but like I said, I'm not trying to cause problems, just my experience wasn't a good one, and wanted to express it. And again, if she's helping you that's AWESOME and I'm happy for you Smile But no more compounds, no more pills, just dialating (sp?) which isn't that big of a deal once or twice a day when I can fit it in now. New person!

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Re: The perfect doctor.

Post  Jordanlynnea on Tue Apr 30, 2013 10:08 pm

Yeah! Thank you that helped a lot. We are doing the cystoscopy because I had a lot of UTI's when I was younger and had UTI's right before the vulvodynia. So I wouldn't be surprised if I do have some bladder issues but I will talk to her more when I go in for pre op just to double check. Thank you for your honesty and if I don't get better i will look into the dr you mentioned! I appreciate it a lot!

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Re: The perfect doctor.

Post  Alana3 on Tue Apr 30, 2013 11:05 pm

No problem! Do you live in Orlando? Best of luck let me know what happens! Find out side effects too from that

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Re: The perfect doctor.

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