I met up with a first cousin of mine last night. As we were talking, I brought up my recent diagnosis of pelvic floor dysfunction. I am pretty open and can easily discuss any medical condition I have with friends and family. I told him of my suprapubic pain and how it radiated into one testicle and into my lower back and of my urinary frequency and urgency.
He told me that he had been experiencing some similar symptoms for quite some time. He has had sharp suprapubic and abdominal pain for a few years that on occasion will radiate into his testicle. His is left side. Mine is right side. He also said that he has urinary urgency and that "not emptying of the bladder feeling" that so many of us have experienced after ejaculation.
I first told him to see a doctor right away to check for any immediate concerns. I talked at length about reading A Headache in the Pelvis (just got it the mail last Friday and read it in 5 days; a fascinating read) and the Stanford/Wise-Anderson Protocol. I will be letting him borrow my copy.
I come form a large Catholic family (my grandparents had 16 children). Has there been any research done about genetic disposition to CPPS? Or is the fact that I come from such a large family mean that the odds of a close relative having similar symptoms are larger?
Genetic links to CPPS?
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pminturn
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Genetic links to CPPS?
Age: 31 | Onset Age: 25 for pain, 28 for urinary symptoms | Symptoms: right suprapubic pain (intermittent) radiating into right testicle and lower right back, frequent and urgent urination, sitting on golf ball feeling | Helped By: stretching, moment-to-moment relaxation | Worsened By: anxiety, stress, being on my feet for too long
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webslave
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Re: Genetic links to CPPS?
Dr Dimitrakov has conducted research into a genetic basis for IC and CPPS.
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J Dimitrakov
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Re: Genetic links to CPPS?
Yes, we do have an ongoing research study looking at the genetic basis of chronic pelvic pain syndrome (both in men and women). Large families are very helpful and are also particularly informative in studies such as ours. Here's the link to our study:webslave wrote:Dr Dimitrakov has conducted research into a genetic basis for IC and CPPS.
http://clinicaltrials.gov/ct2/show/NCT0 ... kov&rank=1
Best,
JD
This communication provides general information, and is not a substitute for face-to-face medical care. A doctor-patient relationship should not be assumed by the reader.
Jordan Dimitrakov, M.D., Ph.D.
Jordan Dimitrakov, M.D., Ph.D.
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carld
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Re: Genetic links to CPPS?
I'm convinced there is a genetic link because my 24 year old nephew has CP/CPPS as well. He has a history of anxiety as well just like myself.... 
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I encourage anxiety prone UCPPS people to consider L-Theanine
Age, 44 onset age 37 Feb 2006 Freq. need to urinate. Sensation of having to urinate soon after going. Perineum discomfort/burning/tightness, pubic area discomfort @ times,poor urine stream, post urine dripping/spray. All symptoms have improved with my protocol. At the worst I give it a 1 to 2 on irritation and discomfort and frequency. Helps: Elavil 5mg for anxiety and mast cell protection, (will only take it as needed) self internal PT as needed, stretching, walking, stairmaster cardio workout and light weights, reducing stress, moment to moment relaxation, deep breathing relaxation and using a Theracane. Makes worse: sitting for long periods, stress, over focusing on it. Currently 95%-98% recovered. Stay positive, relaxed and control your anxiety.
I encourage anxiety prone UCPPS people to consider L-Theanine
Age, 44 onset age 37 Feb 2006 Freq. need to urinate. Sensation of having to urinate soon after going. Perineum discomfort/burning/tightness, pubic area discomfort @ times,poor urine stream, post urine dripping/spray. All symptoms have improved with my protocol. At the worst I give it a 1 to 2 on irritation and discomfort and frequency. Helps: Elavil 5mg for anxiety and mast cell protection, (will only take it as needed) self internal PT as needed, stretching, walking, stairmaster cardio workout and light weights, reducing stress, moment to moment relaxation, deep breathing relaxation and using a Theracane. Makes worse: sitting for long periods, stress, over focusing on it. Currently 95%-98% recovered. Stay positive, relaxed and control your anxiety.
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graeme
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Re: Genetic links to CPPS?
My sister has ic 
Age:33 | Onset Age:19 | Symptoms:burning urethra, deep sore stinging around the perineum, dribbling | Helped By:when flare starts deep relaxing over a toilet to let out dribbling urine, hot bath, rubbing a heat cream on the perineum, Tens with a pad on the perineum, running, medication (solpadol) for pain. Current treatment: PT. | Worsened By:sitting, stressing over it, ejaculation, sometimes alcohol but I risk it. Been feeling a lot better last 6 months about 85% with a few flares lasting about 5 days. No longer having PT. Stretching every other night and I believe time is also a big factor for me
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pminturn
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Re: Genetic links to CPPS?
After spending the Thanksgiving holiday with my family, I found out that my oldest brother (36 year old father of 5) has been suffering from urinary frequency for the last 15 years. He had many tests that showed that "nothing was wrong with him." I asked him about pain symptoms, and he seems to have none.
Another thing came up that struck my curiosity. I brought my copy of A Headache in the Pelvis for my dad to read because he doesn't have much of an understanding of CPPS. My younger sister thought that I had brought it for her. She has been suffering with severe chronic pelvic pain for some time. She was given a diagnosis of endometriosis. A cyst was found on one of her ovaries. The thing that confuses me is that her pain is on the opposite side of her cyst.
Another thing came up that struck my curiosity. I brought my copy of A Headache in the Pelvis for my dad to read because he doesn't have much of an understanding of CPPS. My younger sister thought that I had brought it for her. She has been suffering with severe chronic pelvic pain for some time. She was given a diagnosis of endometriosis. A cyst was found on one of her ovaries. The thing that confuses me is that her pain is on the opposite side of her cyst.
Age: 31 | Onset Age: 25 for pain, 28 for urinary symptoms | Symptoms: right suprapubic pain (intermittent) radiating into right testicle and lower right back, frequent and urgent urination, sitting on golf ball feeling | Helped By: stretching, moment-to-moment relaxation | Worsened By: anxiety, stress, being on my feet for too long
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J Dimitrakov
- Urologist
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Re: Genetic links to CPPS?
Interesting. Quite in line with our findings!
Best,
JD
Best,
JD
This communication provides general information, and is not a substitute for face-to-face medical care. A doctor-patient relationship should not be assumed by the reader.
Jordan Dimitrakov, M.D., Ph.D.
Jordan Dimitrakov, M.D., Ph.D.
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elitynski
- Old Hand
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Re: Genetic links to CPPS?
My dad has Parkinsons - and he's 72 - and he also has urinary frequency issues. He has some BPH I think - but he takes Flomax. He also has anxiety issues.
Mine didn't start until I was 43 and again -being terribly overweight.
But there may have been some predisposition to this whole thing.
Mine didn't start until I was 43 and again -being terribly overweight.
But there may have been some predisposition to this whole thing.
Age: 49 | Onset Age: 43 | Symptoms: Some overactive bladder symptoms | Helped By: Hot Baths, relaxation, a little valium, exercise / weight loss | Worsened By: stress, possibly diet, possibly...(fill in the blank)