Hello everyone,
this is my first post in the forum, though unfortunately I am not ‘new’ as far as my chronic pelvic pain is concerned. I have been suffering for 12 years now (I am a 32-years old man) . It started with a prostatitis, (treated with huge doses of antibiotics), then evolved into myofascial contracture (treated with internal massage-Stanford protocol). More or less, I could manage the symptoms until 2010, when my descent to hell has started and when I first heard the word ‘pudendal’.
My symptoms are a sense of unbearable weightiness in the perineum, pain in sitting, pain after bowel movements and after sex, pain in climbing stairs and in walking more than 3-400 metres.
I live in Europe, and I visited a lot of popular doctors here (Beco, Pesce, Cappellano, and so on…European patients will know), did a lot of exams (EMG, PNMLT, defecography, colonoscopy, dozens of internal exams, well I guess you’re pretty familiar with all this stuff), and all this just to have an impressive difference of opinions, from the Belgian surgeon who wanted to perform a series of nerve block (percentage of success, told by him: 15 per cent) and should it not be successful, operate me, to other doctors who thought my problem was in the posture, to others that think that my problem was due to a perineal descent caused by a weakening of the pelvic muscles after the Stanford protocol. All these latter doctors think that it would be crazy and useless to go under surgery.
Of course I have also tried Lyrica, Tramadol, Laroxyl and so on, with no success, and with aggravation of symptoms. The only drug that I feel beneficial is Rivotril, that’s it.
To not be misunderstood, I have tried all the therapies suggested by the abovementioned doctors, and also Physiotherapy, but again with no success.
Now, as I am really tired of spending thousands of Euros in dealing with doctors disagreeing with each other, I was thinking to do the only exam I had not done, that is the MRI 3 Tesla, especially because, considering my symptoms, that could be a good exam to investigate a condition that has never been explored in my case, that is Pelvic Venous Congestion Syndrome.
Here below you can find some link:
http://www.ncbi.nlm.nih.gov/pubmed/22312071
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3036528/
http://www.ehow.com/about_5420861_pelvi ... drome.html
http://www.bsir.org/patients/pelvic-ven ... -syndrome/
Has anyone of you been diagnosed with this? Any input would be very appreciated.
Hopefully, but we have to check it out these weeks, here in Europe we ll have dr. Bodner (colleague with Dr Aszmann, in Wien) that uses the so-called Potter’s protocol. Avoiding a trip to NY to have a MRI would sound good, frankly speaking.
Looking forward to your feedbacks and sorry for my mistakes in English!
Pelvic Venous Congestion Syndrome
Re: Pelvic Venous Congestion Syndrome
Hi....I have had an MRI Neurography back in March, and I have pelvic venous veins, that are extremely torturous, apparently lots of ladies of my age have these, and I had three large babies.
I have PN, PGAD, and IC I have gone down the conservative route and refused nerve blocks, and just had internal and external physio. I am about 75% better than I was, my perinium really aches in the morning in bed when I wake up until I have opened my bowels, it then goes. The problem with this problem is no one really knows, and they are guessing and I don't know if my veins are the cause of the problem but whilst I am like I am I will leave well alone, as the more investigations we have the more potential problems they can cause.
As my problem was caused by a very simple gynaecological investigation. My pelvic floor was in spasm, but it is now much softer. I had no idea such things where possible to go wrong, and you are so young to have this, although I think it is just luck of the draw and are genetics. I haven't really answered your question, but just to say I have these venous things.
I have PN, PGAD, and IC I have gone down the conservative route and refused nerve blocks, and just had internal and external physio. I am about 75% better than I was, my perinium really aches in the morning in bed when I wake up until I have opened my bowels, it then goes. The problem with this problem is no one really knows, and they are guessing and I don't know if my veins are the cause of the problem but whilst I am like I am I will leave well alone, as the more investigations we have the more potential problems they can cause.
As my problem was caused by a very simple gynaecological investigation. My pelvic floor was in spasm, but it is now much softer. I had no idea such things where possible to go wrong, and you are so young to have this, although I think it is just luck of the draw and are genetics. I haven't really answered your question, but just to say I have these venous things.
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DakotaGirl
- Posts: 74
- Joined: Thu Oct 16, 2014 9:18 pm
Re: Pelvic Venous Congestion Syndrome
Are pelvic venous veins also known as phleboliths? I had many of those when they Xrayed my hip,for the torn labrum.
Someone help me.
Someone help me.
Re: Pelvic Venous Congestion Syndrome
Struggling, it might be helpful if you use the search box (upper right) to search on several different words including "embolization", "varicose", "congestion", etc. The 3T MRI isn't 100% accurate for diagnosing the cause of pelvic pain but maybe it will tell you something.
Some other people have had embolizations for pelvic blood vessels and you can read their experiences on the forum.
Good luck.
Violet
Some other people have had embolizations for pelvic blood vessels and you can read their experiences on the forum.
Good luck.
Violet
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
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Struggling
- Posts: 2
- Joined: Fri Oct 31, 2014 5:31 pm
Re: Pelvic Venous Congestion Syndrome
Dear Violet,
thank you very much for your suggestions. I did a research as you advised, and I have to say that the results I found are not very encouraging. Basically, if ever varices have been found in the tests carried out in our fellow sufferers, the therapies proposed by the doctors (e.g. embolization) have not been effective, according to the testimonials I saw. I am considering to try Diosmin (Daflon 500, which should not do any then harm or relevant collateral effects) for a while, given its general anti-inflammatory effect and given that in some Italian forums, I saw that has been prescribed in pelvic congestion.
I found some indications here
http://www.ncbi.nlm.nih.gov/pubmed/17629162
http://www.lfb.lv/venu_vadlinijas.pdf (pag.4 par.8)
http://www.plamj.org/index.php/plamj/article/view/952 (I know, it's an experiment in rats...sometimes I feel like I am entrapped in a kind of tragicomic bubble...)
thank you very much for your suggestions. I did a research as you advised, and I have to say that the results I found are not very encouraging. Basically, if ever varices have been found in the tests carried out in our fellow sufferers, the therapies proposed by the doctors (e.g. embolization) have not been effective, according to the testimonials I saw. I am considering to try Diosmin (Daflon 500, which should not do any then harm or relevant collateral effects) for a while, given its general anti-inflammatory effect and given that in some Italian forums, I saw that has been prescribed in pelvic congestion.
I found some indications here
http://www.ncbi.nlm.nih.gov/pubmed/17629162
http://www.lfb.lv/venu_vadlinijas.pdf (pag.4 par.8)
http://www.plamj.org/index.php/plamj/article/view/952 (I know, it's an experiment in rats...sometimes I feel like I am entrapped in a kind of tragicomic bubble...)
Re: Pelvic Venous Congestion Syndrome
Struggling, yes, unfortunately the results of embolization posted on this forum have not been promising. I thought it would be good if you could read that for yourself.
Some people have posted 3TMRI resports on this forum indicated pelvic varices but I don't remember reading any confirmed cases where the varcies turned out to be the cause of the pain. Sometimes on the MRN enlarged pudendal blood vessels show up near the ST/SS ligamental grip. The explanation I have heard for this is that the pudendal blood vessels are compressed between the ligaments and there is a back-up of blood in the vessels. Since the blood vessels follow the same course as the pudendal nerve, one theory is that this finding on imaging can indicate a compressed nerve as well as compressed vessels. I've seen this in some of Dr. Filler's MRN reports. I've not seen any publications that confirm this.
I think Dr. Bautrant published an article in which he described color dopplar being used to determine if abnormal blood flow through the vessels could indicate a compression of pudendal blood vessels and pudendal nerve. That technique for determining a possible entrapment doesn't seem to have taken hold very widely in the medical profession. http://www.ncbi.nlm.nih.gov/pubmed/19195783
Anyway, good luck with the MRI. We had a doctor who works with Dr. Potter speak at the recent PN conference in Boston. My understanding is that while they don't exactly see the nerves, they can see the course of the nerves very clearly and he showed slides that clearly showed scar tissue along the course of the nerve, particularly in the Alcock's canal. It showed up on one side but not the other. So the providers who do the imaging seem to think there is value to it although some of the surgeons have reported the results of imaging do not correlate with what they find in surgery. So, I don't know. It is still a bit of a mystery, unfortunately.
I hope you will be able to get this sorted out.
Violet
Some people have posted 3TMRI resports on this forum indicated pelvic varices but I don't remember reading any confirmed cases where the varcies turned out to be the cause of the pain. Sometimes on the MRN enlarged pudendal blood vessels show up near the ST/SS ligamental grip. The explanation I have heard for this is that the pudendal blood vessels are compressed between the ligaments and there is a back-up of blood in the vessels. Since the blood vessels follow the same course as the pudendal nerve, one theory is that this finding on imaging can indicate a compressed nerve as well as compressed vessels. I've seen this in some of Dr. Filler's MRN reports. I've not seen any publications that confirm this.
I think Dr. Bautrant published an article in which he described color dopplar being used to determine if abnormal blood flow through the vessels could indicate a compression of pudendal blood vessels and pudendal nerve. That technique for determining a possible entrapment doesn't seem to have taken hold very widely in the medical profession. http://www.ncbi.nlm.nih.gov/pubmed/19195783
Anyway, good luck with the MRI. We had a doctor who works with Dr. Potter speak at the recent PN conference in Boston. My understanding is that while they don't exactly see the nerves, they can see the course of the nerves very clearly and he showed slides that clearly showed scar tissue along the course of the nerve, particularly in the Alcock's canal. It showed up on one side but not the other. So the providers who do the imaging seem to think there is value to it although some of the surgeons have reported the results of imaging do not correlate with what they find in surgery. So, I don't know. It is still a bit of a mystery, unfortunately.
I hope you will be able to get this sorted out.
Violet
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
Re: Pelvic Venous Congestion Syndrome
Violet please who is this physician who works with dr. Potter? is he a radiologist or a surgeon?
would you please also tell me where to find the details of the conference in Boston, which physicians participated or any leaflet?
thank you very much
would you please also tell me where to find the details of the conference in Boston, which physicians participated or any leaflet?
thank you very much
Re: Pelvic Venous Congestion Syndrome
Mikette, the physician is Dr. Carrino and he's on the HOPE list of physicians. http://www.pudendalhope.info/node/58#NY
Here is a flyer from the conference. http://pudendalassociation.org/pudendal ... rence.html
Here is a flyer from the conference. http://pudendalassociation.org/pudendal ... rence.html
PNE since 2002. Started from weightlifting. PNE surgery from Dr. Bautrant, Oct 2004. Pain now is usually a 0 and I can sit for hours on certain chairs. No longer take medication for PNE. Can work full time and do "The Firm" exercise program. 99% cured from PGAD. PNE surgery was right for me but it might not be for you. Do your research.
Re: Pelvic Venous Congestion Syndrome
thank you very much! very informative.Violet M wrote:Mikette, the physician is Dr. Carrino and he's on the HOPE list of physicians. http://www.pudendalhope.info/node/58#NY
Here is a flyer from the conference. http://pudendalassociation.org/pudendal ... rence.html