I barely have time now to visit my urologist, but before new year I will for sure. I think I will do that cystoscopy since even when I stay hydrated etc and there is no random pulling pain episode, my bladder is just acting very weird. Random pains, weird strong pains in bladder that kinda feels like its about to explode and then I need to urinate some more for it go away. Also, when my bladder is in pain it feels like about to pull on navel or atleast pain is radiating to navel area. I had these bladder pains since I remember and these pains started when that awful string pain staretd, so I guess they are more or less caused by the same thing.
If my current urologist will be sceptical and cystoscopy will show nothing I will find new one. I saw on the interent there is urologist in my town that is 40 years in the buisnes, so maybe he will be able to help me ;)
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And I just realized it could be related to sexual activities, However, I'm male and I got this since I was about 9 and exactly the same time that I started masturbating. given the gender gap, I am wondering whether you might be under similar circumstances as mine. No offense if you feel uncomfortable with this question.
Additionally, I found hot press sometimes work for me. It was quite useful but now not that efficient. Besides, I'm strongly convinced that it highly probably related to muscles disorders so staying relax and chill would be quite helpful.
I have turned into countless doctors for help and gone through the innumerable medical examinations, which turned out that I was suggested to see a psychological doctor or just stay relax.
But the pain is real. it can never be visualized.
Now I'm keeping extraordinarily cautions of any risky gesture or movements such as yawn, hurling up, even quick turn-back.
This not only engenders a lot of pain on me but massive nerve tension. What if I got this when I was outside and even couldn't stand upright.
If you have got any ideas or plausible evidence to explain it Pls share it with me.
I can't even imagine that I gonna suffer from this in the rest of my life.
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Did you ever tried to stay hydreted? Like drinking 2 liters of water a day and always make sure to empty your bowels/bladder regualry? This helped me a lot, but its still not a permanent fix. Are you sure your doctors ruled out Urachus? There are few guys here on the forum that had exploratory surgery and Urachus looked fine, but after they decided to remove this thing it fixed everything. Its seems like Urachus can be a problem even if there is no Cyst or other sh*t.
I get you, like for real. I keep an eye on every movement I do with my abdomen. I always sit straight and try to not get my belt create any pressure near navel. Its so stupid that we need to have are mind occupied by this bs every single day!
Ps. For me it never was caused by sexual activities, but I always make sure to urinate after ejaculation. I feel like any pressure on the bladder is a factor in possible episode.
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Please see a gastro doctor for this pain if you can. My regular doctor could not figure it out and I would still be in pain if I had not gotten answers from the endoscopy.
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Are you sure it is gastric erosion in your case? Your pain was felt in the tip of the penis and during urination as well? Can't find any site with such pain listed as symptom. Urachus problems and hernia seems to be the case for most of us here.
Don't get me wrong I'm just trying to understand different variables and options, since after my USG and CT scan was worthless its hard for me to find any doctor who is willing to do more invasive tests...
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sitting position nor when urinating. Interestingly, I have still had twinges and minor pains in the area behind my belly button , even stabs of pain that are similar to “the pain” (or perhaps just invoke the same fear in me), but these have never turned into the incredible ripping pain that stops me in my tracks and mean I can’t walk straight. In the past, these similar pains would have undoubtedly meant an attack was coming on, or I would feel a twinge which would often turn into the pulling pain and then not being able to walk straight due to the tightening string- but this hasn’t happened since the surgery so this is a positive! While it is slightly worrying that I’ve still had twinges, is very reassuring that they have never turned into anything more.
I’m still reticent to say that the surgery has worked as I could sometimes go months without getting the pain, however the fact I have had similar pains that have NOT invoked the same tearing string pain gives me hope that by removing the urachas I have taken this specific, excruciating mechanic away.
Just an update on what my surgeon said... he still wasn’t 100% sure if the operation had fixed the problem or not as it is so unusual. Surgeons cannot see “pain” and therefore cannot know for sure. He said the urachas looked fine and pathology was normal (it was just a remnant...no cyst or inflammation). However...he did say that he believed removing it would help alleviate symptoms I was describing as I now have nothing tethered to my belly button. He said the urachas in and of itself was not necessary a problem, or I would have been in pain all the time (eg if I had a cyst) HOWEVER he believed under certain circumstances (eg extra tight stomach muscles, a weird movement, dehydration, full bladder etc) something was causing it to be pulled or tightened somehow...therefore leading to the pain I described. So it was a “part” of a problem...for example if tight stomach muscles/dehydration were Step A, the pulling of the urachas and excruciating pain was Step B...it was an element to the pain I was feeling. Hopefully we have eradicated step B!
Again, he couldn’t say with 100% confidence that I would never have the pain again, but he said that he did feel reasonably confident that it was part of the problem (what else causes a pulling from belly button to bladder?!). The culprit has now being removed and only time will tell. So of course I am incredibly anxious wondering if it will ever come back, and I think I have a lot of Trauma from the extreme pain history, so it will be a long journey to complete recovery and I freak out a bit with every twinges but I remain hopeful and optimistic!
How are you going? Have you decided to investigate having the surgery? Any updates?
Happy to answer any more questions if you have the and I promise I will check this more frequently!
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Hello and thanks for update.
Okey so I will tell you what I was thinking for the last few months regarding this issue:
I have been doing quite a lot of reaserch about bladder and how it reacts to food and dehydration. So when you are dehydrated bladder walls are getting irritated and bladder itself is shrinked for long period of time. Apparently when you have severe UTI you can feel pain in navel and this pain comes from bladder.
My point is, maybe its just some form of irritable bladder syndrome? The more I age the more my bladder gets irritated. I never had this issue when I was in my teen years, but now after I drink 2-3 glasses of whisky I can get strong burring in my groin and urinating is no fun (thats why I avoid drinking).
The next day after drinking night my navel area is tender and urinating is still no fun.
So thats just my theory, but I'am still more keen towards Urachus.
I feel like your doctor might have just figured this thing, his theory makes a lot of sense.
So I still didn't had a chance to get that cystoscopy, becasue I had a lot of other things to do lately (renovating my apartment, new job, my friends wedding). I also got scared sh*tless of that procedure. Some guys lose feeling in penis and are not able to ejaculate. I don't want to suffer form yen another issue...
But I would like to share something with you. When I was 8 i got this pain for the first time, but I didn't realize it got worse when urinating than it came back at night when I was 14 and still didn't try to pee during the episode. From that time on it just went downhill. I had this pain maybe like once a month and it got more frequent, like 2 times a week. I lost a lot of weight, becasue of the pain I was in. I also finally realized it pains to urinate (not in the penis, but in navel and below it). I did some tests back then and when I have tryed to stay straight I felt pain in my penis and even in my right thigh). Every next episode was more severe and I remember that my whole abdomen near navel was in huge pain (before it was in like right part of the navel only).
So I went to urologist and Ultrasound didn't reveal sh*t, but doctors told me its probably kidney stone and I should drink a lot. I have also realized that sitting in front of pc hunched over was a huge trigger and that I basically don't drink much (maybe 2-3 teas a day). I started to dring 2-3 liters of water a day and since then I always sit straight and I have improved dramatically. Oh and I did change my urinary habits. Now I always go to toilet as soon as I feel the urge.
Because of all these changes in my daily life I didn't feel that awful pain in good 10 years. You might want to ask, why bother if you are fine? Well, in meantime I have tryed to drink less or sit hunched over, but mild pains in navel started to comeback, so its just a temporary fix that I need to repeat every day and its exhausting... I always have to remember to drink and I always have to watch the way I sit... On top of that I do too have huge trauma, but you know what is helping me with this? All my close friends know about my issue and noone is questiong it, so I can feel safe when Im not home. Still kinda get panic attacks when I'm in my job and I start to feel mild pulling in navel.
Last thing I want to share is that even when I'am drinking a lot of water I still have painful, burning uriantion, dull pains in navel and bladder, stabs and pulling pains in the same area (mild nor severe like before), so next month I will get back at trying to fix this once and for all. Will update the board for sure.
I wish you all the best, becasue noone deserves to feel hopeless like us. Stay strong!
Ps. I wanted to ask if your pulling pain also affected your penis? Did you feel pain at the tip of the penis when you tryed to stand straight during the episode? I have read that one guy with Urachal cyst had good explanation to this. There is penis nerve near bladder and urachus inflamation affect this. Oh and do drinking lots of water help you? Or you kinda forget to stay hydrated?
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Hello and thanks for update.
Okey so I will tell you what I was thinking for the last few months regarding this issue:
I have been doing quite a lot of reaserch about bladder and how it reacts to food and dehydration. So when you are dehydrated bladder walls are getting irritated and bladder itself is shrinked for long period of time. Apparently when you have severe UTI you can feel pain in navel and this pain comes from bladder.
My point is, maybe its just some form of irritable bladder syndrome? The more I age the more my bladder gets irritated. I never had this issue when I was in my teen years, but now after I drink 2-3 glasses of whisky I can get strong burring in my groin and urinating is no fun (thats why I avoid drinking).
The next day after drinking night my navel area is tender and urinating is still no fun.
So thats just my theory, but I'am still more keen towards Urachus.
I feel like your doctor might have just figured this thing, his theory makes a lot of sense.
So I still didn't had a chance to get that cystoscopy, becasue I had a lot of other things to do lately (renovating my apartment, new job, my friends wedding). I also got scared sh*tless of that procedure. Some guys lose feeling in penis and are not able to ejaculate. I don't want to suffer form yen another issue...
But I would like to share something with you. When I was 8 i got this pain for the first time, but I didn't realize it got worse when urinating than it came back at night when I was 14 and still didn't try to pee during the episode. From that time on it just went downhill. I had this pain maybe like once a month and it got more frequent, like 2 times a week. I lost a lot of weight, becasue of the pain I was in. I also finally realized it pains to urinate (not in the penis, but in navel and below it). I did some tests back then and when I have tryed to stay straight I felt pain in my penis and even in my right thigh). Every next episode was more severe and I remember that my whole abdomen near navel was in huge pain (before it was in like right part of the navel only).
So I went to urologist and Ultrasound didn't reveal sh*t, but doctors told me its probably kidney stone and I should drink a lot. I have also realized that sitting in front of pc hunched over was a huge trigger and that I basically don't drink much (maybe 2-3 teas a day). I started to dring 2-3 liters of water a day and since then I always sit straight and I have improved dramatically. Oh and I did change my urinary habits. Now I always go to toilet as soon as I feel the urge.
Because of all these changes in my daily life I didn't feel that awful pain in good 10 years. You might want to ask, why bother if you are fine? Well, in meantime I have tryed to drink less or sit hunched over, but mild pains in navel started to comeback, so its just a temporary fix that I need to repeat every day and its exhausting... I always have to remember to drink and I always have to watch the way I sit... On top of that I do too have huge trauma, but you know what is helping me with this? All my close friends know about my issue and noone is questiong it, so I can feel safe when Im not home. Still kinda get panic attacks when I'm in my job and I start to feel mild pulling in navel.
Last thing I want to share is that even when I'am drinking a lot of water I still have painful, burning uriantion, dull pains in navel and bladder, stabs and pulling pains in the same area (mild nor severe like before), so next month I will get back at trying to fix this once and for all. Will update the board for sure.
I wish you all the best, becasue noone deserves to feel hopeless like us. Stay strong!
Ps. I wanted to ask if your pulling pain also affected your penis? Did you feel pain at the tip of the penis when you tryed to stand straight during the episode? I have read that one guy with Urachal cyst had good explanation to this. There is penis nerve near bladder and urachus inflamation affect this. Oh and do drinking lots of water help you? Or you kinda forget to stay hydrated?
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The most recent occurrence was Friday morning while sitting with family at coffee (7/5/19) and Sunday night sitting alone watching TV (7/7/19). Sitting is not a problem, attempting to stand is when the attack occurs. It’s also seemingly completely random, I can go months without incident, then suddenly struggle for a few days.
The string description is probably the most brilliant, from the belly button to the clitoris. I might add that strings can be tied in two ways, tightly or loosely. I imagine this as a loose string, just floating around internally, and occasionally gets hung up or caught on some internal organ. There is an uncomfortable tugging sensation at the clitoral end, but I would not describe it as painful. The pulling sensation at the belly button end, however, is quite painful. For me there is no pain or pulling in any section between those two points, thus my loose string analogy.
Recently in my aging cramping feet have become a thing, and I might compare this pain to a sort of cramp, but only in the sense that once I get myself stretched fully out again will the pain stop. My coping skill over the years has been to accomplish standing, then to lay back on a bed keeping my feet on the floor to fully extend my torso into a sort of back bend. It’s a struggle to accomplish. The pain is not broad by definition. It’s pinpointed directly inside the belly button.
Thank you for your time.
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