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Tue May 22, 2018 7:22 pm by SinclairSassy

» Cleveland Clinic - Pain Management, Weston, FL
Tue May 22, 2018 7:13 pm by SinclairSassy

» Finally found a place for me...
Mon May 21, 2018 4:08 am by mtsp

» UK Vulvodynia Clinics
Sun May 20, 2018 9:58 am by katycrawford

» 8 years and struggling
Thu May 17, 2018 11:22 pm by Kezz

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Thu May 17, 2018 11:11 pm by Kezz

» Gabapentin Gel. or other topical creams
Thu May 17, 2018 11:55 am by Rosie21

» What has been helping ME (much less pain over time!!)
Wed May 16, 2018 3:43 am by leoscc

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.

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What has been helping ME (much less pain over time!!)

Wed May 16, 2018 3:43 am by leoscc

Hello everyone! I vanished for quite some time as my life became consumed by not only this but other daily responsibilities as well. Shortly after my diagnosis, my boyfriend f 3 years left me as he did not want to deal with this. It left me broken for a while but also gave me time to figure out what the heck was going on. So, I will write out a quick list of my symptoms and what helped me.

1. I …

Comments: 0

I cured myself 100% of vulvodynia twenty years ago--I hope this helps someone

Mon Mar 12, 2018 4:33 pm by totallycured

Hi,

Every so often I'm reminded of the constant, persistent, horrible pain I was in two decades ago, and I reach out to try to help others who are suffering. If someone had offered me a solution during that terrible time, I'd have jumped at it. I hope this helps someone.

Yes, I did have terrible vulvodynia. It felt like someone poured acid all over my vulva. My doctor confirmed it and was …

Comments: 4

I'M NEW - Do I listen to my gyno who I feel has it wrong?

Fri Mar 09, 2018 6:17 pm by Tunes25

Hello!

I am a 25 year old woman and wanted to share my story here as I feel frustrated by the suggestions of my gyno and am hoping for some advice.

To give the context for this: in September 2016 I moved in with my long term boyfriend after living abroad a year and (nearly) abstaining from sex. Within a few weeks I had got a yeast infection which I treated myself successfully, but then 2 weeks …

Comments: 5

Condoms Less Painful?

Mon May 07, 2018 3:35 am by stillinpain

I'm just curious, has anyone found using condoms to be less abrasive to the skin than without? I just got off birth control and haven't stretched myself out enough post surgery to try sex yet, but when I do I am wondering how trying it with condoms with affect the sensation. I feel like for me the skin to skin sensation creates pain, not just at my entrance but internally, too, since I also have …

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Will there be an end?

Fri Apr 27, 2018 12:06 am by Krista2828

I go in and out of being okay and not being okay with this condition. I question often why me? I am a problem solver by nature and I feel so defeated that after tons of research and trial and error and doctors and tears that there still is no answer.

I am in my 20's.. it shouldn't be this way.

Id love to know what all has worked! I am willing to try anything to get my life back. I am curious …

Comments: 6

you can be healed so easy and quite fast.

Thu Apr 26, 2018 11:46 pm by pussycat

Hello everyone,
i am new to this forum. I wanted to share my personal "journey" with V with you and to give you a real hope you can be totally healed/recovered from V. Many years ago i was struck with V, it was painful and got worst and worst, eventually i could not sit, could not stand, could not walk, could not swim in a swimming pool anymore. I was becoming bedridden, it frightened …

Comments: 4

Hi Im from Australia :)

Sat Jan 08, 2011 1:08 am by emma

Hi girls... I live in Australia.
I am currently undergoing a new treatment for vulvodynia. Just wondering if anyone else here has tried it. It's Endep in the form of cream to apply directly on the area. I dont know if anyone else has tried this but so far evidently it has had a 50% success rate.
Anyway i feel at a loss. This new treatment is exciting but at the same time i just dont feel like …

Comments: 35

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 …

Comments: 14


Marek Jantos

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Marek Jantos

Post  JimJones on Thu Nov 22, 2012 7:41 am

Hello,

My GF and I have been suffering through Vulvodynia for over a year now. We have seen 3 Gynaeocologists and a heap of Doctors.

We have had a consolutation with Marek Jantos and I was hoping someone who has dealt with him could give us there opinion or experience with him? It almost seems to good to be true and after a year of this painful and frustrating problem we dont want to get our hopes up. He is in Australia and I am hoping for some feedback on working with him?

Thank you

Jim

JimJones

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Re: Marek Jantos

Post  cba321 on Thu Nov 22, 2012 11:31 pm

Hi Jim,

I went to Marek Jantos a few years back. I did biofeedback with him. I found it helpful with controlling my emotions and reactions to the pain. The biofeedback also helped me to understand what relax "feels like" as my muscle was in spasm. However, I don't believe that it gave a significant change. In saying that my muscles were in spasm so much they were like bone so was very hard to get around that, so that may have been more the problem rather than Marek. I have ended up getting Botox to stop the spasm for a short time so I can stretch the muscles out before the Botox wears away. So far, for me that is the only thing that has worked. However the Botox is yet to wear off, but is looking promising. Depends on what the cause is for the pain for your GF and how severe it is, is it more nerve pain or muscle spasm or both?

I go to a Physio, I would highly recommend going to a physio if you aren't already. Marek is very knowledgeable, however he is not a physical therapist. There was at least one thing that he said that was incorrect in regards to the muscles that I know now, a minor thing, but I think it is better to cover all your bases. If you are in Sydney, I go to Sherin Jarvis at the womens institute, number is 1300 722 206. There is a gyno there who is a professor and specialises in vulva pain. If you are in another state google search for a Physio with a specialty in pelvic pain. A physio can also do biofeedback.

Overall Marek is good. It is hard to say whether he can make changes as everyone has really different symptoms and potential causes. Psychologically this condition is extremely damaging for everyone involved so I think it is a very good idea to seek help from a psychologist but also from a physical therapist who has an understanding what is going on with the muscles if that is a problem with your GF.

Hope that helps!

Take care

cba321

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Re: Marek Jantos

Post  JimJones on Fri Nov 23, 2012 3:26 am

Thank you for your input cba!!

My gf pain seems to be a muscle spasm but how can you tell which it is? It only hurts during sex and she has lost all sex drive. She has had hip problems prior to this starting but that had never effected sex?

The intensive treatment he offers is quite exspensive and we dont want to waste money obviously. He also mentioned something about the urethra only being sore to touch in females with this condition? I thought that was questionable but then again what do I know.

I think we will see a Physio in Qld.

Thank you so much for answering Smile

JimJones

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Re: Marek Jantos

Post  cba321 on Fri Nov 23, 2012 6:52 am

Hi Jim,

No problem

I think a Physio is a good idea, just make sure that they have experience with pelvic pain disorders or you will be wasting your time, it is better to travel to one. I believe there is a Royal Women's Hospital in Brisbane so that may be a good place to start, or at least for info on where to go that might be closer to you. Also you can get an enhanced primary care form from the GP to cover part of the Physio's costs (you'll get 51.95 back from medicare) for 5 sessions. If she already has hip problems I would definitely consult a Physio, perhaps the hip problem could have changed or gotten worse creating or aggravating the problem. Perhaps the Physio/gyno might look into a scan

I have both nerve and muscle spasm and with the intensity of the pain previously it just felt like global pain when having sex, so it really is hard to differentiate. The nerve pain, for me at least, feels like an electric shock, super sensitivity and makes me jolt. Now that I have had the botox the muscle pain is gone and I am left only with nerve sensitivity so I can isolate it now.

I went to the Physio today and we were talking about the urethra actually, and she said to avoid touching it cause it is a sensitive area in general, she never tests my sensitivity there...but perhaps he meant more so in people with vulvadynia??? There are people with vulvadynia who have problems with urination but not everyone has that, I don't.

Good luck to you and your gf!

cba321

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Re: Marek Jantos

Post  hoping on Thu Feb 21, 2013 11:34 am

Hi Jim,

Just wanted to give the other side of things. I am working with Marek and have had some really good results, but seem to be quite different from you and your Girlfriend. I don't have any spasms at all but the muscles have been rock hard, such that penetration is difficult/impossible. During sex, the experience is purely uncomfortable due to the number of trigger points and and quick or fast movements make it incredibly painful. I also suffer during internal exams or pap smears. I had bacterial vagninosis which seemed to go hand in hand. I saw Marek about one month ago and did a number of tests to see what strenght my muscles were at at testing with trigger points. From there I had a one month of homework with the biofeedback machine, 15 minutes twice daily. My second session with Marek was just the other day and we went to the next step to look at how often I am actually clenching these muscles and a number of relaxation and breathing exercises as well as stretching at the muscles in the opening. It was very exciting to me to see the difference that I was able to really gain some flexibility and it was possible to insert two fingers easily and without any bad pain. I have continued exercises to do and next session (in one month) will be focusing on those muscles in the urethra area. I do not have any problem right now with passing urine or any infections, but I had one especially bad one a number of years ago due to sleeping with a guy with an extremely large penris. I think whether I knew it or not my problems may have started then. I know that through the pressure points Marek has wored with that they are incredibly sensitive although I was not aware of any such problem prior to this inquiry.

hoping

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Re: Marek Jantos

Post  Always Wishing on Thu Mar 14, 2013 3:51 am

Hi Jim,


Not sure if your GF has started with Marek Jantos or not yet? He can be very good however it all depends exactly what the problem is. I have just started with a Physio in Brisbane that is a guru when it comes to vulva pain. Her name is Alyssa Tait and she is the only Physio in Brisbane that I know of that deals with this awful condition. She is located in Salisbury. Marek is alot of money I know but if he is able to help your GF he is worth every cent. He is the most lovely man and I don't think he would string you along if he could not help her as he is very honest.

Best of luck.

Always Wishing

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Market Jantos Feedback and Contact Details

Post  hoping on Thu Sep 04, 2014 8:45 am

Hi I just wanted to add to this post and also provide some additional information.

I also visited Marek for about 9 months after being diagnosed with Vulvodynia after 2 years of "searching' for the right treatment with medical practicioners in person and on-line. Marek was the first person who understood my condition and provided any kind of relief. I had the situation where my muscles were rock hard for any kind of penetration, increased sensitivity and intense pain internally though I noticed even external stimulation to orgasm didn't give me the kind of pleasure it had previously and felt too sensitive.

Marek worked with me using massage and biofeedback to strengthen as well as loosen the muscles. It took time, was painful at times but I am now able to have sex comfortably. I also feel that I have a basis to self treat now with massage and muscle stretches as it is an ongoing issue. I think due to the way I manage stress and due to having a seated job. A case of bacterial vaginosis went hand in hand as a trigger.

I speak highly of Marek for anyone who would like to see him for their condition. he is not the only option but he did work for me. I found him to be empathetic at all times and made me comfortable which considering the nature of what he is doing is pretty remarkable.

As an FYI, I e-mailed Marek recently as I had trouble accessing his website as I wanted to show my boyfriend. He has had to remove it to a complaint that has been made against him. Unfortunately, when you are trying an unsual form of treatment on an unusual condition this is a possibility. If you are trying to reach him he can be contacted on marekjantos@gmail.com instead,


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Re: Marek Jantos

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