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Somebody please help me...

Fri Nov 24, 2017 8:05 am by Andlag

Hey everyone,

since I started being sexually active i often experienced burning in my vagina which was often worse during sex /around the time of my period or when using lubricants. I was never able to use tampons because the one time i tried putting them in it felt like acid was poured on my skin. Fast forward to 2 months ago when I got a UTI and an allergic reaction in my vagina. I thought it …

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7 years later and life looks bleak :(

Wed Dec 06, 2017 2:50 am by RainyShay77

So 7 years ago I had a case of BV...the antibiotic caused a horrible yeast infection which took 5 months to 'get rid of'. During this time I had allergic reactions to 2 of the yeast infection creams which magnified the pain. Over the past 7 years I've tried multiple rounds of physical therapy (they only slightly helped), chiropractic, nerve blocks, medications to target nerve pain (amitriptyline, …

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Amtriptyline, baclofen, gabapentin cream for provoked vestibuldynia

Mon Nov 20, 2017 8:15 pm by WVR00

Hello,
Has anyone had success with this cream in helping their vulvodynia? How long has it taken to help? I’ve had some success with it, but not completely better. I’ve been on it for a month. I️ was hoping to hear from some ladies who have had major success with this cream. I’m hoping for some encouragement here. This condition is so frustrating. I’m lucky enough to have access to two …

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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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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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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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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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