My story in short:
1.Was born as a premature baby, but was not diagnosed with any related medical conditions that time.
2.Age: 16-17 years old. One day I suddenly saw and felt a mass in my right testicle. I talked about it with my mother. She told me we would go to a doctor to check this in case it didn't go away. That mass felt soft, liquid-like and not solid, and disappeared after a day or two, so I guessed it was an hydrocele.
3.Age: 16-19 years old. That mass continued to appear from time to time, and additional symptoms began to appear such as a feeling of pressure and even light pain in the area of my right testicle (bot not always, and especially when the mass became bigger or deeper in the scrotum),
4.Age: 19 years old. During the Spring/Summer period It's started, what I call "a constant sensation to urinate". In the beginning I basically thought it was due to some kind of stress and/or drinking a lot of fluids (I was a student that time, and the weather where I live is quite hot during the summer). But limiting my fluid intake didn't help. As the days were passing by, I started to notice this sensation became more strong and more frequent. In summer it already became very annoying interfering with my activities and sleep. After going to the bathroom, the sensation disappeared but came back after 20-30 minutes or so. In the end of that Summer, the sensation became constant in nature, as disappearing only for a few minutes after urinating. Additional symptom was a constant 24/7 (ALL THE TIME) annoying sensaton in the tip of penis. it feels like there's something "trapped" in there.
5.Age: 19-25 years old. My sleep became poor. During that period I went to see many urologists. They gave me a lot of tests, among them: urine and blood tests, urine culture, ultrasound imagings of the upper urinary tract (kidneys, ureters and bladder+prostate), physical tests. They couldn't find anything unusual. Some of them told me the "it is all in your head" thing, others were clueless/seemed to be indifferent. There was a GP who gave me an alpha-blocker drug to try to ease my symptoms. I took it for week or two but appeared to do nothing but dryness in my mouth and a little bit of urinary retention. I started to accept my condition and try to live with it. It was not only the sensation to urinate that bothered me: the more I try to hold my urine the more feelings of pressure and pain build in my pelvic area, radiating to the stomach and even close to the chest. This is a very annoying and unpleasant feeling, waking me up when I sleep every 1-2 hours.
6.Age: 26 years old to present. Due to another medical condition unrelated to this one, I tried to give it "another try" and went to see a new urologist. In addition to the constant sensation to urinate, the nagging feelng in the tip of the penis and the nocturia, I also mentioned to him I usually felt a mass close to my right testicle accompanied by aches from time to time. He gave me a suspicious look and told me I might have an hernia. He checked the area physically and told me he suspected I had an hernia through my inguinal canal, not of intestinal loop but some peritoneal content. He referred me to a general surgeon. The surgeon checked my and told me I had an indirect inguinal hernia of reducible omentum which was protruding to my scrotum through the deep inguinal ring. He advised me to to have an operation to fix it. I asked him whether it could cause my aches in the pelvic and abdominal area, and he said it could. I asked him if it could also cause that sensation in my penis, and he said he didn't think so.
7.I saw another general surgeon thereafter who thought much the same: symptoms in the pelvic area - yes, in the genitals - not conclusive.
8.I still had follow up appointments with that last urologist, He wanted to check my urine stream, so I had a uroflowmetry test. The results were: average flow of 13 ml/s and max of 18 ml/s (bladder filled with 520 ml) and somewhat flat curve of the flowing pattern and residual urine of 80ml (in other ultrasound tests the residual urine after urinating was 0-40 ml and actually zero most of the times, so it wasn't considered to be significant). The velocity sounded a little bit low for me, so I asked him if those results were normal to my age. He told me they appear to be normal but quite low, so because of this and because of my chronic symptoms he suspected I had a urethral stricture or a problem with my prostate or bladder. He gave me a DRE and told me my prostate was just fine. He referred me to have an urethrocystoscopy done under a general anesthesia. I did it last summer and the again, nothing unusual was found. That last urologist decided to end the consultation with me. He didn't want me to take drugs because he thought it might not help as it didn't in the past and due to my young age. I asked him if there were additional tests that can be dome such as a urodynamic testing. He was strongly against any further testing, especially invasive ones, and the general impression I got from him was to try to live with it and that's all. I didn't mention the words CPPS/IC to him. Yet he recommended me to treat the hernia and told me it was not related to my frequent sensation to urinate and my nocturia.
9.present: I had an operation to fix my inguinal hernia two months ago. The surgeon also detected an hydrocele, what I suspected I had almost a decade ago already. He said I had an hydrocele of 20 ml, which was considered to be medium, that was "communicating" with my peritoneum through the anatomical defect. So he did a right inguinal hernioplasty with a mesh and hydrocelectomy at the same operation (open inguinal approach).
10. The chronic symptoms stayed much the same (constant sensation to urinate, constant sensation in the tip of penis and dull aches in abdomen). The acute ones (the scrotal ones) disappeared right after the operation, but for the first few week I had some neuological symptoms in thearea of the genitofemural nerve. Fortunaltey it disappeared last month but return in the last few days (however very mild). I guess there's some kind of re-modeling of tissue where the mesh was planted and sutured.
In short:
Age: 26| Onset Age: 19| Symptoms: Urinary frequency, Urinary urgency, constant 24/7 sensation in the penis (in the tip mainly - burning/pressure/discomfort/"wetness"), Nocturia, discomfort and pressure in the pelvic region radiating to the abdomen and becoming severe as time passes since last urination, Stream velocity is somewhat slow and prolonged with an average velocity of ~13cc/min (and max 18cc/min) found in flowmetry test when bladder is filled with 500cc (I always feel like I need to press my abdomen to urinate)| Helped By: Mental distraction, Sexual arousment (having erection)| Worsened By: Focusing on it, being in stressful events/activities| Other comments: Liquid intake and nutrition don't appear to affect symptoms. Sexual activity is fine, sometimes the symptoms seem to be worsened a bit after ejaculation. Age 25-26: Diagnosed with indirect inguinal hernia and medium hydrocele at the same side. After operation many of the acute symptoms (scrotal ones) disappeared, but the chronic urinary and pelvic symptoms (penile and abdominal ones) remained much the same.
Chronic discomfort in penis and abdomen
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Wolfcub
Re: Chronic discomfort in penis and abdomen
Now, I know the penis is innervated by branches derived from the pudendal nerve, but does it have any paths in the abdominal (sometic) area? I couldn't find any clear basis for that in the anatomic literature.
Another thing to note: I've come familiar with the term "trigger point" just recently, but noticed in the last years that if I have aches in my abdomen and I press where it's located, the aches many times reffered to another spot or area.
I also noticed that many times if I press on the perineal area below the scrotum (on the bulbospongiosus muscle) my (penile) symptoms aggravated.
Another thing to note: I've come familiar with the term "trigger point" just recently, but noticed in the last years that if I have aches in my abdomen and I press where it's located, the aches many times reffered to another spot or area.
I also noticed that many times if I press on the perineal area below the scrotum (on the bulbospongiosus muscle) my (penile) symptoms aggravated.
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helenlegs 11
- Posts: 1779
- Joined: Fri Sep 17, 2010 9:39 am
- Location: North East England
Re: Chronic discomfort in penis and abdomen
Hi Wolfcub and welcome,
From your detailed history it does sound as if you may have pelvic nerve issues. As you have discovered the pudendal nerve could be part of that pathology although the abdomen involvement is more likely to be a different nerve. Any additional nerve involvement could still be due to the initial problem, which may be pudendal as you describe the areas innervated by the pudendal nerve as the first problems noticed.
The feeling of urinary frequency is often mentioned in connection with the pudendal nerve and people sometimes do find that other muscles and therefore other nearby nerves sometimes become involved in the complicated pelvic area.
Take a look at the Guide to chronic pelvic pain on the home page under publications. It is up to date (Feb 2012) and quite comprehensive. Chapter 6 covers neuro problems. You will also find a list of nerves that can cause problems at 6.2.1 (anterior/abdomen) Don't get too bogged down by reading through everything, it gets to be a lot to digest and can end up confusing the issue rather that anything helpful initially, although it sounds as if you have done some research already.
A good first approach to defining pelvic problems is through some physiotherapy, there is a list (also on home page) of physiotherapists who are PN aware (always important)
I do think that it may be a good idea to try medication at this stage too. A combo of anti seizure (say pregabalin) and anti depressants (I take cymbalta for instance) can help calm the symptoms down if they are neuropathic.
I would always suggest starting any med regime separately to enable you to find out exactly what works or doesn't and then stop if the drug isn't doing much good or any side effects are not worth the 'trade off' and continuation. Any medication usually needs some time to take effect and side effects can often lessen with a little time too. It's all a bit of an experiment but many people have discovered they can handle symptoms with the aid of medication. Again there are more details on the home page with regard to this.
St John's wart has been reported to help some people too and is more of a natural remedy.
Not sure where you live but you can find lists of PN aware doctors (you guessed it . . . on the home page
) but I would explore the physio side first perhaps or at least in conjunction with, as this can give you a better handle on what is going on before a Dr visit, unless you find a dr. on the list who is near you of course.
Many people here were diagnosed by a physio first as they seem to have more pelvic nerve knowledge than the average GP.
Let us know what happens and how you progress. Good luck, I hope you manage to get some good targeted treatment soon.
Take care,
Helen
From your detailed history it does sound as if you may have pelvic nerve issues. As you have discovered the pudendal nerve could be part of that pathology although the abdomen involvement is more likely to be a different nerve. Any additional nerve involvement could still be due to the initial problem, which may be pudendal as you describe the areas innervated by the pudendal nerve as the first problems noticed.
The feeling of urinary frequency is often mentioned in connection with the pudendal nerve and people sometimes do find that other muscles and therefore other nearby nerves sometimes become involved in the complicated pelvic area.
Take a look at the Guide to chronic pelvic pain on the home page under publications. It is up to date (Feb 2012) and quite comprehensive. Chapter 6 covers neuro problems. You will also find a list of nerves that can cause problems at 6.2.1 (anterior/abdomen) Don't get too bogged down by reading through everything, it gets to be a lot to digest and can end up confusing the issue rather that anything helpful initially, although it sounds as if you have done some research already.
A good first approach to defining pelvic problems is through some physiotherapy, there is a list (also on home page) of physiotherapists who are PN aware (always important)
I do think that it may be a good idea to try medication at this stage too. A combo of anti seizure (say pregabalin) and anti depressants (I take cymbalta for instance) can help calm the symptoms down if they are neuropathic.
I would always suggest starting any med regime separately to enable you to find out exactly what works or doesn't and then stop if the drug isn't doing much good or any side effects are not worth the 'trade off' and continuation. Any medication usually needs some time to take effect and side effects can often lessen with a little time too. It's all a bit of an experiment but many people have discovered they can handle symptoms with the aid of medication. Again there are more details on the home page with regard to this.
St John's wart has been reported to help some people too and is more of a natural remedy.
Not sure where you live but you can find lists of PN aware doctors (you guessed it . . . on the home page
) but I would explore the physio side first perhaps or at least in conjunction with, as this can give you a better handle on what is going on before a Dr visit, unless you find a dr. on the list who is near you of course.Many people here were diagnosed by a physio first as they seem to have more pelvic nerve knowledge than the average GP.
Let us know what happens and how you progress. Good luck, I hope you manage to get some good targeted treatment soon.
Take care,
Helen
Fall 2008. Misdiagnosed with lumber spine problem. MRN June 2010 indicated pudendal entrapment at Alcocks canal. Diagnosed with complex variant piriformis syndrome with sciatic, pudendal and gluteal entrapment's by Dr Filler 2010.Guided piriformis botox injection 2011 Bristol. 2013, Nerve conduction test positive; new spinal MRI scan negative, so diagnosed for the 4th time with pelvic nerve entrapment, now recognised as Sciatic, pudendal, PFCN and cluneal nerves at piriformis level.
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Wolfcub
Re: Chronic discomfort in penis and abdomen
Hi Helen, thanks for your reply. I'll take a good look at the publication you mentioned.
I've been reading a lot of researces and articles about PNE/CPPS/IC and other close/related conditions. I found there was some kind of evidence these conditions were related to a neuroinflammation becoming chronic as a result of some imbalance/"defect" (oversensitivity) in specific mechanisms of the immune system. Interestingly, Amitriptyline has been found to be among the few drugs so far alleviating symptoms to some (little) degree in these conditions. This drug is used in managment of ankylosing spondylitis and multiple sclerosis, so I think it might imply that PNE/CPPS/IC have something to do with Immune system hypersensitivity.
After my surgery the scrotal/hernia symptoms disappeared, but I had other acute ones (dull and sharp aches and occasional burning) in the areas of my upper inner right thigh and the upper part of right scrotum. I know they are related to the surgery, because the Genitofemoral nerve and the Ilioinguinal nerve are traveling in the inguinal canal. Anyway they were gone for a month or so, but now, two months after surgery - returned back! I hope they will subside an eventually go away over time. I;ll be making an appointment with the surgeon who operated me. Yet I do not regret I fixed that indirect inguinal hernia, because it was annoying anyway (presenting similar symptoms to these ones + irreducible bulge in the scrotum which was a medium hydrocele).
Regarding my chronic issues - besides the alpha blocker I was given for a week in 2006, I didn't try any drug treatment. I wanted to see a physiotherapist, preferably one whose expertise is in the pelvic/pelvic floor area. There are not many in the area where I live, and the one I spoke with asked me to bring a referral letter from my family doctor. So when I met my family doctor a month ago, she wanted to hear the surgeon's opinion. I met him and he adviced to wait around 6 months post-op to see if symptoms (including chronic ones in the penis and lower abdomen) get better, and also to give the tissue time to heal. I know the area where the mesh was planted has been remodeling - which possibly explain the symptoms I now have post-op.
That's it for now. I plan to talk to the surgeon in the following days. I still plan to see a physiotherapist and also a neurologist in the following year. Dammit, my hernia and hyrocele were officialy diagnosed TEN YEARS since onset of symptoms!
P.S. I live outside U.S.
I've been reading a lot of researces and articles about PNE/CPPS/IC and other close/related conditions. I found there was some kind of evidence these conditions were related to a neuroinflammation becoming chronic as a result of some imbalance/"defect" (oversensitivity) in specific mechanisms of the immune system. Interestingly, Amitriptyline has been found to be among the few drugs so far alleviating symptoms to some (little) degree in these conditions. This drug is used in managment of ankylosing spondylitis and multiple sclerosis, so I think it might imply that PNE/CPPS/IC have something to do with Immune system hypersensitivity.
After my surgery the scrotal/hernia symptoms disappeared, but I had other acute ones (dull and sharp aches and occasional burning) in the areas of my upper inner right thigh and the upper part of right scrotum. I know they are related to the surgery, because the Genitofemoral nerve and the Ilioinguinal nerve are traveling in the inguinal canal. Anyway they were gone for a month or so, but now, two months after surgery - returned back! I hope they will subside an eventually go away over time. I;ll be making an appointment with the surgeon who operated me. Yet I do not regret I fixed that indirect inguinal hernia, because it was annoying anyway (presenting similar symptoms to these ones + irreducible bulge in the scrotum which was a medium hydrocele).
Regarding my chronic issues - besides the alpha blocker I was given for a week in 2006, I didn't try any drug treatment. I wanted to see a physiotherapist, preferably one whose expertise is in the pelvic/pelvic floor area. There are not many in the area where I live, and the one I spoke with asked me to bring a referral letter from my family doctor. So when I met my family doctor a month ago, she wanted to hear the surgeon's opinion. I met him and he adviced to wait around 6 months post-op to see if symptoms (including chronic ones in the penis and lower abdomen) get better, and also to give the tissue time to heal. I know the area where the mesh was planted has been remodeling - which possibly explain the symptoms I now have post-op.
That's it for now. I plan to talk to the surgeon in the following days. I still plan to see a physiotherapist and also a neurologist in the following year. Dammit, my hernia and hyrocele were officialy diagnosed TEN YEARS since onset of symptoms!
P.S. I live outside U.S.
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helenlegs 11
- Posts: 1779
- Joined: Fri Sep 17, 2010 9:39 am
- Location: North East England
Re: Chronic discomfort in penis and abdomen
If you scroll down a bit you will find it under GENERAL about 3 down.
Guidelines on Chronic Pelvic Pain 2012
European Association of Urology
D. Engeler, A. P. Baranowski, S. Elneil, J. Hughes, E. J. Messelink, P. Oliveria, A. van Ophoven, A. C. de C. Williams
It does mention all of the nerves you talk about so I'm sure you are on the right track with your own research.
Not sure if you have seen this one??
http://emedicine.medscape.com/article/1234809-overview
I'm not so good with the anterior nerves but hopefully you will find something helpful in those publications.
Helen
Fall 2008. Misdiagnosed with lumber spine problem. MRN June 2010 indicated pudendal entrapment at Alcocks canal. Diagnosed with complex variant piriformis syndrome with sciatic, pudendal and gluteal entrapment's by Dr Filler 2010.Guided piriformis botox injection 2011 Bristol. 2013, Nerve conduction test positive; new spinal MRI scan negative, so diagnosed for the 4th time with pelvic nerve entrapment, now recognised as Sciatic, pudendal, PFCN and cluneal nerves at piriformis level.
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Wolfcub
Re: Chronic discomfort in penis and abdomen
thanks. i found also a presentation linking LUTS symptoms with pudendal neuropathy.
http://www.perineology.com/files/antolak-aix-2009.pdf
i think that's what i've been chronically suffering of??? what shall i do now?
http://www.perineology.com/files/antolak-aix-2009.pdf
i think that's what i've been chronically suffering of??? what shall i do now?
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helenlegs 11
- Posts: 1779
- Joined: Fri Sep 17, 2010 9:39 am
- Location: North East England
Re: Chronic discomfort in penis and abdomen
If you can find a pelvic physiotherapist who is PN aware (many physio's are thankfully, many people get a diagnosis from a physio rather than a dr)
Have a look on the home pages, you will also find a list of doctors there too. It's often a case of travelling unfortunately as the medics who do understand the problem are rather few and far between, sadly.
Some people have printed off the symptoms page and ticked off matching problems to show their own doctor. This can help tremendously if your dr is open minded to the problem or has some knowledge about it.
There's tons of helpful advice on the home pages. I hope you can find someone to help rule the problem either in, to get some targeted treatment or out wolfcub.
Good luck and let us know how you get on.
Take care,
Helen
Have a look on the home pages, you will also find a list of doctors there too. It's often a case of travelling unfortunately as the medics who do understand the problem are rather few and far between, sadly.
Some people have printed off the symptoms page and ticked off matching problems to show their own doctor. This can help tremendously if your dr is open minded to the problem or has some knowledge about it.
There's tons of helpful advice on the home pages. I hope you can find someone to help rule the problem either in, to get some targeted treatment or out wolfcub.
Good luck and let us know how you get on.
Take care,
Helen
Fall 2008. Misdiagnosed with lumber spine problem. MRN June 2010 indicated pudendal entrapment at Alcocks canal. Diagnosed with complex variant piriformis syndrome with sciatic, pudendal and gluteal entrapment's by Dr Filler 2010.Guided piriformis botox injection 2011 Bristol. 2013, Nerve conduction test positive; new spinal MRI scan negative, so diagnosed for the 4th time with pelvic nerve entrapment, now recognised as Sciatic, pudendal, PFCN and cluneal nerves at piriformis level.
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Wolfcub
Re: Chronic discomfort in penis and abdomen
Wow, I found this interesting:
http://www.pudendalhope.info/forum/view ... =69&t=1443
Maybe I've got varices/scarrings in the perineal area affecting some branches of the pudendal nerve, what causing my constant sensation at the tip of penis? (pressure almost always, and burning sensation occasionally) yet by itself it cannot explain my other symptoms such as the suprapubic/abdominal discomfort that more resemble "interstitial cystitis"/"chronic prostatitis".
http://www.pudendalhope.info/forum/view ... =69&t=1443
Maybe I've got varices/scarrings in the perineal area affecting some branches of the pudendal nerve, what causing my constant sensation at the tip of penis? (pressure almost always, and burning sensation occasionally) yet by itself it cannot explain my other symptoms such as the suprapubic/abdominal discomfort that more resemble "interstitial cystitis"/"chronic prostatitis".