Vulvodynia Support
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» Hope to all my suffering ladies
The perfect doctor.  EmptyFri Oct 23, 2020 12:04 am by ringostarr26

» Please tell me this can get better
The perfect doctor.  EmptySat Jul 18, 2020 7:38 pm by sammykramer

» By no means cured, but doing much better!
The perfect doctor.  EmptyMon Mar 16, 2020 1:26 pm by tinkerbelle2

» How I cured my Vulvodynia!
The perfect doctor.  EmptySat Dec 07, 2019 11:54 am by Millie

» 7 months since the diagnosis
The perfect doctor.  EmptyWed Aug 14, 2019 2:38 am by agtoronto

» Gabapentin Gel. or other topical creams
The perfect doctor.  EmptySat Jun 15, 2019 5:22 pm by mary jane

» IMPORTANT FOR UK SUFFERERS
The perfect doctor.  EmptySat Jun 15, 2019 5:21 pm by mary jane

» Help New Diagnosis
The perfect doctor.  EmptySat Jun 15, 2019 5:07 pm by mary jane

» 6 days post Vestibulectomy - Is this normal?? please tell me about your postop healing process!
The perfect doctor.  EmptyTue Jun 11, 2019 12:56 am by VVSSufferer

Gabapentin Gel. or other topical creams

Thu May 10, 2018 9:43 am by Rosie21

Hi I have been suffering for some years with this abominable pain. I have tried most of the systemic drugs , I asked specialists and Doctors if I could at least try a topical treatment but because this requires a special prescription have been refused Has anybody had a chance of trying these? Thank you I will try to put a link on to some of the research into Gabapentin Gel. Thanks.

Comments: 2

Putnams 'bony parts' cushion or Putnams 'Dr Huff' cushion - which is best?

Sat Aug 01, 2015 4:17 pm by Fielder

Hi everyone,

I'm a newbie.  I live in the UK.  

I'm trying to work out the best cushion to get for my vulvodynia.  I suspect that I could have pudendal nerve involvement (the aching and burning pain is from vagina to clitoris) and I have rectocele and some tailbone pain too.

I have seen some good reports on older threads regarding the Putnams pressure relief cushions....with some ladies …

Comments: 11

An absolute success story- please read!

Fri Mar 08, 2019 10:57 pm by Persevere1990

Dear All,

I posted on here back in March 2017 having just got a diagnosis of vulvodynia after a few months of relentless and acute pain. I was desperate, I was hurting, I was scared I would never know life without pain there again.

I tried creams, acupuncture, numbing gels, frozen pads, baths with various internet recommended concoctions- convinced myself I had lichen sclerosus, herpes, thrush- …

Comments: 0

I'm sorry im rambling

Thu Feb 21, 2019 5:49 am by Jet227

hey, im 19, ive been struggling with this almost a year. The first week I became itchy I went in to check about a yeast infection another week later. I have been to 10 different doctors a total of about 15 appointments for this problem for the past 11 months. I have been tested for everything including having a biopsy. I was first told basically to just go home and use hydrocortazone, then I went …

Comments: 1

New member need advice please

Thu Feb 28, 2019 11:33 pm by PANDORA123

Hello, I have just been diagnosed with unprovoked vulvodynia. Im really scared and worried. It burns a lot and it hurts to sit down. I have been prescribed amitriptyle 10mg. Can anyone give me some hope that I can get better from this condition. Feeling low and depressed.

Thanks

Comments: 5

MonaLisa Touch

Fri Feb 08, 2019 7:35 pm by rl2091

Hi All,

I'm wondering if anyone has any experience with the MonaLisa Touch treatment for Vulvodynia? My pain started when I went on HRT(pill) for anxiety mainly and my pain abruntly stopped when I stopped HRT. However, when I started on the HRT patch (at my dr's suggestion), the pain returned and has never left. That was 7 years ago. I found MonaLisa Touch on the internet purely by accident …

Comments: 3

Diagnosed Recently

Tue Jan 08, 2019 3:55 pm by flissyg

Hi All,

I’m so glad I’ve found a place where there are others who understand how I feel!

So this is my story:-

I’m 36,  and 4 months ago, whilst innocently sitting in bed reading I experienced a very sharp stabbing pain in my clitoris. It last only a few minutes and then subsided as quickly as it came on. It put it down to “one of those things”.  The following morning I woke up …

Comments: 4

New and need advice and help

Wed Dec 05, 2018 3:26 pm by Cin124

Hi everyone,

About three months ago, I started having vaginal and vulval itching. Then, about two months ago, my vulva started to feel painful and look swollen, so I went to the doctor. I was tested for herpes, chlamydia, and gonorrhea which all came back negative. I also had to do a vaginal swab test and the only thing that came back positive was yeast infection. I was prescribed hydrozole …

Comments: 6

New here would very much appreciate advice at the end of my rope

Wed Jan 09, 2019 9:09 pm by Jma990o

This might be a little long but it's been such a long time I've even been able to talk about my problems openly thank you in advance for any helpful advice.
So ok I'm 24 I've been having this problem for over two years seen quite a few doctors and obgyns alike and nobody will take me seriously I have had a few utis and yeast infections and even bv once and this all started after one of the utis …

Comments: 3


The perfect doctor.

2 posters

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Post  Jordanlynnea 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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Join date : 2013-04-28

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Post  Alana3 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?

Alana3

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Post  Jordanlynnea Mon Apr 29, 2013 5:08 am

Yes I am. She's been great.

Jordanlynnea

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Post  Jordanlynnea 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

Jordanlynnea

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Post  Alana3 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

Alana3

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Post  Jordanlynnea Tue Apr 30, 2013 2:34 am

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

Jordanlynnea

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Post  Alana3 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.

Alana3

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Post  Alana3 Tue Apr 30, 2013 12:13 pm

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

Alana3

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Post  Jordanlynnea 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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Post  Alana3 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!

Alana3

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Post  Jordanlynnea 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!

Jordanlynnea

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Post  Alana3 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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