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» Lichen Sclerosus
Fri Feb 16, 2018 2:47 am by ryn207

» MAY HAVE FOUND A CURE- PLEASE READ
Thu Feb 15, 2018 10:04 pm by infinitelywondering

» my rock bottom, psychological effects of vulvodynia, I told him he can leave me
Wed Feb 14, 2018 6:43 am by renegade_magdalena

» Some interesting information about nerve pain in general
Wed Feb 14, 2018 3:58 am by Athena

» Sore after using dilator for first time in a year
Wed Feb 14, 2018 3:45 am by Athena

» What helped me
Wed Feb 14, 2018 3:38 am by Athena

» NO PAIN DURING SEX
Wed Feb 14, 2018 3:33 am by Athena

MAY HAVE FOUND A CURE- PLEASE READ

Thu Feb 15, 2018 10:04 pm by infinitelywondering

Dear all,

Today has been the day I've been waiting for. The day something FINALLY makes sense.
I've been told countless times that I've got nerve damage or a muscular condition, yet none of the specific treatments have helped me. My GP suggested attacking this from a different angle so referred me to a dermatologist specialist


after having a vestibulectomy with no success, I decided to visit …

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NO PAIN DURING SEX

Sat Feb 10, 2018 12:18 am by rockylife

I HAVE NO PAIN DURING SEX, BUT I FEEL THIS BURNING SENSATION ALL DAY JUST BESIDE THE VAGINAL OPENING. DO I REALLY HAVE A VULVODYNIA? I'M CONFUSED.

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Newby not sure where to turn

Thu Feb 01, 2018 3:32 pm by Cerjo87

Hi this is all very new to me , well the talking about it bit is , the pain while having sex and also the uncomfortable feelings after and feeling like I have  sistitus most of the time I’m very used to , I’ve suffered for 7 years now I’m only 30 . Finally after all this time the doctors or should I say my gp has said I have Vulvodynia and have givin me gabapentin to try .i told her I’d …

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Looking for a friend..... and new problems

Sat Jan 06, 2018 11:38 pm by infinitelywondering

Hi everyone,

I hope you're doing well.

I hate to say this, but I feel beaten down and terribly alone. I had a vestibulectomy surgery about 6 months ago and I was absolutely praying it would work. It didn't.

6 months later and here I am, sitting on my bedroom floor crying my eyes out because I know I'll never be able to have painfree sex. I don't know what to do and just need a friend Sad



Comments: 8

Newbie to the site

Sun Jul 30, 2017 12:16 am by Ksa

Hello. Thank you for this wonderful site. I'm currently under the care of a dr in Phoenix that specializes in vaginal disorders. I will probably be on a suppository of estridol the rest of my life and I am currently on medications for a rare form of vaginitis that's pretty unheard of for my age. My vagina literally hates me. I've struggled with vulvadynia for 20 years, the duration of my …

Comments: 4

Vulvodynia from #metoo media coverage

Thu Jan 25, 2018 9:01 pm by dooleyhornberg

I am wondering if anyone else in this forum has experience an increase or flare up in their vulvodynia as a result of the coverage of the sexual abuse scandals in Hollywood, DC, and the recent gymnastics scandal. I have definitely had a flare up.

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So frustrating!!

Thu Jan 04, 2018 1:15 am by Hannah77

Well I'm back in pain after 7 years of pain free days.
I was diagnosed with vulvodynia when I was 17. I suffered for three years with horrible burning all day, painful sex with my boyfriend and just pure misery Sad I went into a spontaneous remission when I was 20. I'm still not sure how the pain stopped but all the sudden I could go an entire day without thinking of my vagina, sex started to …

Comments: 3

Looking for suggestions or encouragement

Sat Jan 13, 2018 12:10 am by ryn207

Hi there. I'm 25 and have been dealing with this for over a year and a half and I'm really starting to lose hope this will ever stop.

In July of 2016 I had a yeast infection. When Monistat didn't work I went to my gynecologist who prescribed Diflucan. When the itching didn't stop she retested me and found that my yeast infection was gone, but I now had a bacterial infection. After taking the …

Comments: 4

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

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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




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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

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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
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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!

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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.
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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!!!!

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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
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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

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

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

I just bought it!!!!!

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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
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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


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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?

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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

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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

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

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