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Anyone have pain with urination?

Tue Oct 16, 2018 7:35 am by mertzwl

Hi everyone - I can't believe I've been dealing with this for almost 10 years and an appointment scheduler at a urogyn office is the one to suggest I look into vulvodynia. Honestly, I don't care, I just thankful I might have an answer.

I have pain in one specific spot right around the urethral opening so it always coincides with urinating (it's not a uti). Does anyone else deal with pain …

Comments: 6

Diagnosed recently, looking for advice

Sat Sep 01, 2018 5:51 pm by Cloudberry

Hi everyone,

I'm so glad I found this forum! I was diagnosed with vulvodynia/vulvar vestibulitis (still not sure about the difference between all the different terms) a couple of months ago and I could do with some advice. This is probably going to be a lot of text because I just want to get everything off my chest, so please bear with me.

I’m a woman in my late 20s. Before getting diagnosed …

Comments: 4

From a concerned husband

Thu Jul 12, 2018 3:45 pm by ConcernedYorkieHubby

Hello everyone,

This is probably a little unconventional, but I’m a man who is here because his wife has been diagnosed with vulvodynia. The poor girl has been suffering with vulva pain for around 10 years now, and I’ve been by her side through the pain and tears and doctors misunderstandings the whole way, and we’re both exhausted and terrified by the whole experience.

I’m sure a lot …

Comments: 4

Had this for 5 years, looking for people who understand

Sat Oct 06, 2018 2:46 pm by blackberrie

Hey all. I'm really struggling to find anyone in real life who can really understand what I'm going through. I've had vestibulodynia for 5 years now and I'm single. Obviously it has completely affected how I approach dating and sex and the fact that I can't really talk to people irl about it has made me feel very lonely. I've found that a lot of the women who have this problem are married and …

Comments: 2

6 year sufferer but I’ve found some hope

Tue Oct 09, 2018 6:33 pm by Npage14

Hey, ladies! I’m new to this support group, I’ve thought about doing something like this for a while so I wanted to try this out! I’ve had vulvodynia for 6 years now, I am self diagnosed. I’m 20 now and the pain started when I had my first encounter with sexual contact when I was 14(I still remained a virgin though it was fingering). For a couple years the pain was so bad I could hardly …

Comments: 0

Hurting, Burning, Itching, and Worn Out

Thu Aug 09, 2018 3:55 pm by donnambr

This vulvodynia that I'm currently suffering with is so cruel. I hurt, I burn, I itch. When I first got this several years ago, before the internet, I though I was the only one with this awful disorder. Doctors couldn't figure it out. I felt so alone and devastated. Somehow it disappeared for a few years and now I'm suffering again. This dreaded V misery is back and I feel like I will be with …

Comments: 5

Hi girls! New in this forum

Fri Jul 13, 2018 7:31 am by Gaby

Hi everyone!

Also joining the V club, Here my story:

It all started last year in september with a very bad throat infection for which i had to take antibiotics for about a month. This cause several yeast infections (candidia albicans).... one after the other!. I had them every month from october 2017 till march 2018. During this period i use an incredible amount of anti-fungal creams and …

Comments: 1

Newbie and feeling helpless

Wed Jul 11, 2018 6:52 am by Taylor1

Hi, I found out a few weeks ago that I have this condition, started off at the end of April as a uti took strong antibiotics then got a thrush infection and now this.. My doctor has tried me on amitriptyline and gabipentin and both made me so poorly I couldn't take it plus I have seen what long use of these drugs has done to my mom for pain and its not good. I am using coconut oil which does …

Comments: 3

I'm new to this forum and would love some advice! :)

Mon Jun 04, 2018 9:13 pm by anikita

Hi lovely gals!

I'm honestly hoping to get any bit of advice anyone might have to offer. I go from bouts of sobbing hysterically in my boyfriend's arms to feeling confident that I can beat this.

I haven't been actually diagnosed with vulvodynia but EVERYTHING under the sun has come back negative. I started having sex 4 years ago after starting Lo Loestrin, with my first and current boyfriend …

Comments: 6


Marek Jantos

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Marek Jantos

Post  JimJones on Wed Nov 21, 2012 11:41 pm

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 3:31 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 Thu Nov 22, 2012 7:26 pm

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 Thu Nov 22, 2012 10:52 pm

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 3:34 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 Wed Mar 13, 2013 8:51 pm

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 1:45 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,


hoping

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