Log in

I forgot my password

Latest topics
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 …

Comments: 19

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

New here, my story and looking for advice

Wed Apr 26, 2017 9:02 am by rachiecakes

Hi All!

I was really hoping to get some feedback from everyone here - it's very hard dealing with an issue like this because no one really understands what I'm going through!

Im 28 years old I've had interstitial cystitis for 3 years - but never an vaginal issues. About 6 months ago I got a yeast infection following a course of antibiotics - similarly I developed IC after a bad UTI. The itching …

Comments: 4

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: 2

Male visitor

Wed Jan 18, 2017 11:19 pm by outsider

Hello!

I am a 25 year old guy who has erectile dysfunction following an injury a few years ago. I am here because I think that men and women with sexual dysfunction could benefit from dating each other. My experience has been that women have lost interest when they found out that penetrative sex was not possible with me.
So I am interested in learning more about female sexual disorders. Do young …

Comments: 3

New Here: Question/My Story

Mon Apr 03, 2017 2:00 am by overit14

Hi everyone. I came across this site by Googling "vulvar pain support". I feel like my case is different than most I read about so I was wondering if anyone else here experiences this in the way that I do.

This started in 2012 and has happened off and on since. I get really, really red and it's very painful, swollen and burns. Sometimes it may be a little itchy, but mostly it just …

Comments: 6


Has anyone had experience with Marek Jantos (in Australia)?

View previous topic View next topic Go down

Has anyone had experience with Marek Jantos (in Australia)?

Post  delphi on Mon Dec 16, 2013 1:40 am

Hi everyone,

A bit about myself... I've had vulvodynia for about a year now. I'm 20 years old. The onset for me was when I first attempted sexual intercourse last year. It was very painful but the pain never went away on subsequent attempts. It feels like a very burning, stabbing sensation. Then I began to get a sore clitoris and I am experiencing a urinary urge/frequency which keeps me up at night now and usually I take some sort of medication (painkiller/sleeping tablet) to get me to sleep. I knew something was wrong so I went to the GPs and had a STI test and thrush test, all came back negative. I then went to a gynaecologist who examined the skin and said it looked fine but said my pelvic floor muscles were in spasm and referred me to Marek Jantos.

I had a couple of appointments with him before travelling to Adelaide to do an intensive week of therapy with him. I was told that I would feel significantly better after the week and would have an 80-90% improvement , but I feel the same as I always have. While I did notice less sensitivity in my trigger points at the end of the week, my everyday symptoms, like the clitoral sensations and urge/frequency and vaginal pain I don't feel have changed. I got started on biofeedback as well which I work on everyday.

But I'm wondering, has anyone had success with his therapy, the intensive week in particular? It's just been so expensive and I'm rather disappointed that I didn't get a great outcome. I know these things take time but I'm just wondering if it has worked for anyone else or if I'm the only person it hasn't worked for.

Please help!

Thanks Smile




delphi

Posts : 4
Join date : 2013-07-03

View user profile

Back to top Go down

Re: Has anyone had experience with Marek Jantos (in Australia)?

Post  alessandria on Mon Dec 16, 2013 7:07 am

Hey Delphi! I would not worry about things not being 100% just yet -- how long ago was your therapy? Inflammation works in crazy ways sometimes such that it won't disappear immediately the second your trigger has been resolved. It might take a while for your immune system to stop being on the attack, and for your nerves to stop sending a pain signal, just because of the strength of the original stimulus that caused them to start reacting this way. The fact that you have had any relief from your therapy is actually super encouraging, because that means you were able to reduce the inflammation and pain signaling with these steps. There is no magical cure for any chronic pain disorder, short of removing the nerves that are misfiring, but you can slowly normalize your body by eliminating every factor causing the pain in the first place. For you, your muscles were in spasm, which can result in the urinary problems and the nerve pain, which can then go on to cause inflammation, which all cycle back on themselves to cause more pain and more inflammation and more spasming. I would continue focusing on learning what it feels like to not be tensing your pelvic floor, and making a conscious effort throughout the day to relax the muscles. If you keep up with all of this on a continuous basis, and train your pelvic floor until it has been repaired, it's very likely that things will slowly but surely improve. Vulvodynia is frustrating and slow, but it does get better for a lot of women once they identify their cause.

Also, I would get evaluated for interstitial cystitis if your muscles are now normal, but you are still experiencing the urinary urges and frequency. Muscle issues can explain the vulvodynia and urinary tract symptoms 100%, but so can IC. A urologist or urogynecologist should be your next step if the muscular approach isn't working for you.

Many hugs, from one young sufferer to another! I know how frustrating this is, but honestly, I do think there is hope for every single one of us. Smile

alessandria

Posts : 39
Join date : 2013-12-07

View user profile

Back to top Go down

Re: Has anyone had experience with Marek Jantos (in Australia)?

Post  mary jane on Mon Dec 16, 2013 6:16 pm

it's not interstitial cystitis, it's the pudendal nerve. I know because my bladder is 100% healthy and never had a UTI in my entire life and yet I had urgency and frequency and felt I had a grapefruit between my legs plus clitoral pain and buzzing for a short while, but once I upped my ami dose it went away. the pudendal nerve controls the bladder
avatar
mary jane

Posts : 297
Join date : 2013-10-05
Location : UK

View user profile

Back to top Go down

Re: Has anyone had experience with Marek Jantos (in Australia)?

Post  Alana3 on Mon Dec 16, 2013 6:40 pm

Yeah, but bladder pain can also be caused by endometriosis and vulvodynia (YES it can cause you to pee frequently). Watch what you diagnose on here, lots of conditions cause urinary issues, not just IC or nerve problems. Also, IC can be treated with ami as well as they tired to treat me with it when they thought I had IC and it ended up being endo. Point being lots of conditions come with urinary issues. Also, IC you would test negative for infection anyway, as well as endo, vulvodynia, cervical infection, etc etc. Hell the FLU makes me pee more! LOL  Smile 

And to answer your question, I don't think a week would be long enough to make anyone feel better it took months with my physical therapy, plus acupuncture, massage and surgery. Honestly, it took a long time to have problems its not going to take a week to cure them all. If that were the case, women from everywhere would be flocking to Australia! Which hey, sounds awesome esp if there's a cure! But when something sounds too good to be true it probably is. Not to discredit the doctor, I'm sure he's great, but literally its taken me years to feel better and get cured (as most of the women on here have mentioned too). I'd find a different specialist for a different opinion. Or do physical therapy more often if it is muscle spasms. I also started dilating myself with a vibrator which helped my pain and hurry my healing process, but this was 6 weeks after my surgery, so I don't know if it would help you or not. But dilating is recommended with muscle spasms, they aren't too expensive, so maybe ask your doctor about that so you can help yourself!

Alana3

Posts : 1086
Join date : 2012-09-25

View user profile

Back to top Go down

Re: Has anyone had experience with Marek Jantos (in Australia)?

Post  mary jane on Mon Dec 16, 2013 6:47 pm

fair enough, I don't know anything about endo because I don't have it. however she mentioned her pelvic floor muscles were in spasm so it should be the pudendal being irritated/crushed by the tight muscles. that nerve is HUGE, it has to have something to do with her symptoms....and it is the main culprit of clitoral pain
by the way, I know there is a vulvodynia specialist in your country, Dr Richard Reid in Sydney, he has his own theories and methods to treat vulvodynia.
In london GPs are as dumb as a post, I had to ask for my own nerve pain medication, sometimes you have to document yourself on a disease.
avatar
mary jane

Posts : 297
Join date : 2013-10-05
Location : UK

View user profile

Back to top Go down

Re: Has anyone had experience with Marek Jantos (in Australia)?

Post  Alana3 on Mon Dec 16, 2013 7:29 pm

Mary Jane- I didn't mean that to be bitchy just saying that there are a ton of reasons why someone could pee, but yes the muscles are an indicator of what you're going thru. Be glad you DONT have endo its terrible! But I hope we all get better soon!!!!

Alana3

Posts : 1086
Join date : 2012-09-25

View user profile

Back to top Go down

Re: Has anyone had experience with Marek Jantos (in Australia)?

Post  mary jane on Mon Dec 16, 2013 8:38 pm

@ alana don't worry honey, I have something equally horrible even though it's not endo Smile
I feel for us women, I was just thinking these past few days that we have to go through so many painful events from painful intercourse, period pains, giving birth....I was reading "the camera my mother gave me" by susana kaysen last night, she had vulvodynia as well...and it broke my heart to read how her bf kept pestering her for sex every night when she was in pain. it just made me angry
avatar
mary jane

Posts : 297
Join date : 2013-10-05
Location : UK

View user profile

Back to top Go down

Re: Has anyone had experience with Marek Jantos (in Australia)?

Post  Alana3 on Mon Dec 16, 2013 8:49 pm

oooh details on the book please!!! and I am DEF NOT discrediting your pain at all- all of this is just absolutely terrible

Alana3

Posts : 1086
Join date : 2012-09-25

View user profile

Back to top Go down

Re: Has anyone had experience with Marek Jantos (in Australia)?

Post  Alana3 on Mon Dec 16, 2013 8:56 pm

I just bought it!!!!!

Alana3

Posts : 1086
Join date : 2012-09-25

View user profile

Back to top Go down

Re: Has anyone had experience with Marek Jantos (in Australia)?

Post  mary jane on Mon Dec 16, 2013 10:14 pm

oh, wow. Well, hope you like it....it was a good read, even though i disagree with her refusal of medication for her V..but it is her choice after all... Smile
avatar
mary jane

Posts : 297
Join date : 2013-10-05
Location : UK

View user profile

Back to top Go down

just some info on marek jantos

Post  deedee on Sat Jan 04, 2014 9:19 am

hey everyone,

just a bit about myself first... im 21 years old and have been dealing with vulvodynia for about a year now. After 10 or so doctors appointments and constant complaining of pain, burning, thrush, infections and other symptoms, by doctor sent me to a gyno. The gyno said i had vulvodynia and possible endometreosis but advised me to see a physiotherapist. I saw Sherin Jarvis who is based in Sydney. She gave me dilator exercises to do at home. I didnt feel like they made any difference and the pain was unbearable to manage. I found it difficult to inflict pain of myself like that (as you can imagine).

Meanwhile, a friend of the family told me she had been suffering from the same thing but for much longer, she also told me to go and see Marek Jantos as he was really good. I went and saw Marek once and he didnt do much other than tell me i may need to come to Adelaide for a week of intensive therapy. This sounded very promising. I had another doctors appointment with my gp about blood test results (totally unrelated) and i mentioned Marek to her. She was very suspicious of him and decided to look him up. She showed me that he wasn't on the list of registered medical practitioners in Australia. We both found this quite strange and i couldn't come up with a reason as to why he wasn't on that list. Every gp to physio etc, is on that list. A few days later, my gp called me and told me to come and pick up some papers she had ready for me at the front desk. She said something about Marek didn't sit right with her and she had decided to further investigate him over the weekend. I went and picked up legal documents that came from "parliament of South Australia, Inquiry into bogus, unregistered and deregistered health practitioners".

Now i'm sure that everyone who has been to see Marek, has been asked to sign a sheet saying that his work is experimental. I signed it and i understood that but what this legal document says, is beyond what i thought. I am just going to copy exactly what is says (not all of it, but the important bits)..

"This committee also received written correspondence from the South Australian psychological Board regarding its decision to cancel the registration of a psychologist, Mr Marek Jantos, in November 2007. The Board found Mr Jantos guilty of, among other things: - Providing treatment that was not within the proper bounds of practice of psychology.
- failing to observe appropriate boundaries and precautions in the practitioner/patient relationship, and
-engaging in numerous counts on inappropriate physical contact with the patient's genitals and buttocks".

Now, Marek told me that he used to be a psychologist but he steered away from that industry because he felt like they didn't understand psychology (i did find this comment weird but i was so desperate for answers, it went in one ear and out the other). He failed to mention he was banned from psychology. He also told me he was a gp and im still not sure if that is true.

I just felt like i needed to put this info out there, he may be good at what he does and have proven results in bio feedback but id like an explanation as to why he was found guilty of touching patients genitals in psychology.

stay safe and good luck with everything ladies and gents x


deedee

Posts : 2
Join date : 2014-01-04

View user profile

Back to top Go down

Thanks

Post  delphi on Wed Jan 08, 2014 5:43 am

Thanks Alessandria, your answer was very thorough and helpful. I'm going to look into seeing a urologist if things still don't work.

Deedee, I also went to see Sherin as well but I didn't find her treatment helped either. What other treatments have you tried in the meantime?

Has anyone else done the intensive therapy week with Marek?

delphi

Posts : 4
Join date : 2013-07-03

View user profile

Back to top Go down

Re: Has anyone had experience with Marek Jantos (in Australia)?

Post  deedee on Wed Jan 08, 2014 5:57 am

I tried Marek's suggestions which was to use my thumbs and push the bottom muscle's of the vagina outwards, not touching my urethra. I struggled to do this. The pain when entering my vagina was unbearable. I couldn't tell you if it worked or not because i didn't give it a proper go. I was taught the clench and release technique with Sherin when inserting dilators, didn't find that helped either. Other specialists have told me to stay clear of certain foods that have gluten but unfortunately, no change. Right now i'm waiting to see another specialist in February.

Have you tried anything you can suggest to me, delphi?

Thanks

deedee

Posts : 2
Join date : 2014-01-04

View user profile

Back to top Go down

Re: Has anyone had experience with Marek Jantos (in Australia)?

Post  delphi on Sun Jan 19, 2014 4:32 am

Hey Deedee,

No sorry, no other suggestions. that's all I've tried myself.

Wishing you all the best Smile

delphi

Posts : 4
Join date : 2013-07-03

View user profile

Back to top Go down

Re: Has anyone had experience with Marek Jantos (in Australia)?

Post  Sponsored content


Sponsored content


Back to top Go down

View previous topic View next topic Back to top

- Similar topics

 
Permissions in this forum:
You cannot reply to topics in this forum