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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 …

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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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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 …

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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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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?

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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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