Sharp Pulling Pain in Belly Button - Part 2

So happy to hear you are back to doing all your normal activities again! It takes a while to fully recover from any kind of surgery as your body takes such a beating, but it’s also absolutely nothing compared to the pain we used to suffer so in that sense I feel like no other pain will ever be such a big deal for me in the future, and you are probably the same! You are very lucky you didn’t have to have a catheter! Although that first pee does sound terrifying ;-). They took the bladder cuff along with my urachal remnant so I had to have a catheter for 8 days while it repaired itself! It was the absolute worst part of the recovery and pretty distressing but again, I’d do it a thousand times over the fix this pain. They must have been able to take yours out without the bladder cuff. Either way it’s gone, right! Anyway, it has been SO
SO good chatting, and I would love to stay updated on your recovery...and I’ll make sure I do the same! It’s been so interesting to hear your almost identical story, and the other poster’s as well, because suddenly this very weird pain problem that I always thought was just my own weird “thing”, isn’t just mine anymore...it’s literally impossible for anyone else to understand and it’s so soothing just knowing there are others out there who GET it, in the physical, emotional and psychological sense. Take care and Talk soon :-)

Hello, so lil update on how my appointment with newfound urologist went.
She is just great! After I entered her office she asked me about my symptoms and quickly replied "well it really sounds like Urachus is being the problem here". We did quick Ultrasound despite the fact that I only paid for consultation. She found some structure under my abs and above bladder that is more or less 6cm long and 1cm thick (my previous doctors told me that this thing is probably just fat), but she thinks it might be Urachus or some form of damaged muscle.

So our plan is as follows:
- get another ultrasound done, but this time by someone who specializes in muscles and see if it really is just some damaged part of the abs.
- MRI of my abdomen with focus on this thing

After that we will do Cystoscopy just to see if there isn't any Urachal Cyst lurking in my bladder and the next step might be the surgery. I would also like to add that I don't really believe that this thing uder my abs is Urachus, but who knows. The most importat thing is that she shares my thinking and she believes that Urachus can cause this pain even if it is lookin fine. This is totally something different for me since all doctors so far were looking at me like I'am some kind of id**t. I will update you guys probably in two months and I do hope that my new doc will finally fix me.

Ps. She is also very happy to do Cystoscopy where my previous urologist didn't want to perform it. What is most important, she already talks about surgery unlike other doctors who were ver, very sceptical.

That is great news! I’m so glad you found someone good. Did you share with her the stories and outcomes from this forum?

I will keep my fingers crossed for you! Remember, even if it doesn’t show a cyst or urachal remnant on any of the tests, this does not mean that it isn’t the urachas causing your pain. Hopefully your doctor recognises this and would be willing to perform the surgery anyway. Don’t give up and keep fighting for what you KNOW the problem is. You can fix this. Keep us updated! All the best :-)

Yes, I printed her all my findings and clues from this and similar pages. I mentioned her that for some it was Urachal cyst and it only was found during cystoscopy, so she really wants to try this option out. Fun fact, my last urologist didn't want to do it since in my CT scan I look like a healthy young guy and he didn't want to damage my urethra even if its only small chance for such side effect.

More important, in my prints I included your story and shared our thinking that Urachus can cause this terrible pain even if its "normal". She believes, but doesn't really get how you can cut it out if its obliterated (healed as it should). If I'am correct Urachus turns into medial umbilical liagment and this thing can be removed.

Thats why I have one question for you, you had "real" urachal remnant or they just took out your medial umbilical liagment? I mean they are the same thing, but if I get things right medial umbilical liagment is urachus, but obliterated properly and everyone has one, right? So in your case your urachus turned into this liagment, but it was in pain anyway, so it kinda was urachal remnant? It is kinda hard to explain since english isn't my first language, but I hope you get what I mean.

Ps. I will have all my examinations done probably in february as I need to save up some cash (Cystoscopy and MRI are not that cheap here), but I will update you when I'm done for sure ;)

I am the guy from the US who was in the military who proposed the urachal remnant theory many years ago. I am happy that to see that my research and guessing was right! All that said, I STILL have not found a surgeon in the US who understands this problem and can perform this surgery. Can anyone here point me to a urologist or other specialist or the hospital you used to execute the surgery? Thank you so much and happy holidays!

Hey there, good to see you made your way back to this thread and that we’ve proven right your very insightful theory and research! A huge thank you to you as well, for posting your research, as it was a piece of the puzzle that helped me get to where I am today. Im one of the people on this thread who have had the urachal remnant removed and have been cured since (no sharp, tearing, pulling pain ever again). I had my operation done in Sydney, Australia, by a urological surgeon. I am happy to share his details but wondering if it’s of any help if you’re based in the US? What sort of surgeons/specialists have you been seeing? My suggestion would be to go to a urological surgeon (urologist specialising in surgery).... print out these posts and give it to them. Otherwise...I recommend you come to Sydney! Let men know if you want more info, would be great to connect. In the meantime, keep staying positive in the fact that you can and will fix this! :-)

Good question, and I still don’t really fully understand the difference myself! I can say, though, that the pathology report back after I had it removed specifically read “consistent with urachal remnant”... I believe it was more than just the median umbilical ligament (which is the urachus), but also some tissue remains. Based on my research, 1/3 of adults have a urachal remnant at autopsy. I guess we are just the unlucky ones who have it tethered in a weird way, causing the pain. I would say though, regardless of whether it’s an actual urachal remnant or just the ligament (or indeed if they are just one and the same), it still needs to be removed as it is what is causing your pain. It will fix you, I feel really certain of that! I’m lived experience of this.

Hi there --- please see pg. 37 of this forum where I shared my full story and discussed recovery with another person who has had the same surgery to have the urachal remnant removed.
It's titled: *** PLEASE READ *** I KNOW WHAT THIS IS *** AND I KNOW HOW TO FIX IT!!! ***
The parts you're probably most interested in are...
"...A few phone calls/emails later and we’d landed a Urologist who was keen to see me. This man was kind, compassionate and understanding of my frustration. After hearing me out, he decided to send me for more scans, which revealed a small umbilical hernia. I was then referred to a hernia/colorectal specialist who – after a simple phone call and description of my symptoms – decided that the best course of action was to remove the urachal remnant via laparoscopic surgery (keyhole surgery) and while he was in there, he wanted to take a look around and make sure there was nothing else lurking beneath the surface that we had to deal with...It all happened very quickly. I was on the operating table a couple of months later...The surgery went great. He removed the urachal remnant in its entirety and also repaired the umbilical hernia – which accounted for some of my other pain/symptoms...I am based in Australia. The specialist who performed the surgery is based at Greenslopes Private Hospital in Brisbane – but any specialist of the same kind could perform this surgery..."

Keep pushing - I had to go through quite a few specialists before I found one who didn't look at me like I was mad!

Hi Friend! --- 6 months post-surgery and still going strong!

Great to hear, friend! I am 14 months post surgery now and likewise still going strong. Getting braver and more comfortable in my skin with each day :-) All I hope is that all these other people who have visited this forum looking for answers can read our posts and take action too. There is a clear cause and a clear fix.

Hi, it is me again. Small update:

So I'm after another ultrasound but this time done by surgeon who specializes in traumatology and muscles. According to him my abdominal muscles are healthy and this structure under my abs is most likely Urachal remnant.

I mean, he did show me how this structure reaches my belly button and stuff, but I'm kinda sceptical, because it simply seems to be "too good to be true".

My MRI is scheduled for february 18th and after that I will go back to my urologist and see what she is willing to do next. Perhaps we will start thinking about the procedure already.

Oh and by the way ladies, would you like to get in touch via facebook/instagram or something? I could show you my ultrasound images. You could show me your reports and stuff and maybe if they are useful I could print them for my urologist.

Take care and I will keep you updated!

Hey there, thanks for the update! This sounds REALLY positive. Please don’t think it’s “too good to be true”. I’m 99% certain your pain is caused by a urachal remnant, as the pain and symptoms you have described are exactly the same as ours. Honestly, In my opinion there’s nothing else your pain could be. You have the exact same pain as at least 3 of us on this forum who have had the remnant removed and been fixed since. Even if the ultrasound didn’t show anything (which it did), and even then if the MRI doesn’t show anything, the key here is to GET IT REMOVED ANYWAY! Absolutely nothing showed up for me on scans, nor our other friend, and yet we had the remnant removed and it fixed us- it clearly was the culprit. So honestly, I don’t know if it’s even worth doing all these tests, my advice would be to ask your urologist to remove it anyway. Even if your remnant looks perfectly normal, I still strongly believe it is the culprit. As discussed, some people may have extra tight or oddly tethered remnants bundled in nerves that causes the pain. I just really wholeheartedly Hope you find a wonderful surgeon who is willing to the operation for you, because in my experience it has been truly life changing, and I want you to have the chance to live pain free as well!

Re getting in touch, I was thinking about this too but we aren’t allowed to share personal info on here (it gets deleted). One thing I was thinking is if someone theoretically started a Facebook group page called “urachal remnant” , then we searched for this group, we would be able to add ourselves to the page and all get in touch that way. I doubt any other group with that name would exist so it would be easy to find. I can’t of course offer any medical advice, so looking at your ultrasound wouldn’t be helpful, but I’d be happy to share information about my surgery that might help your urologist.

Take care and talk soon!

Hello.
Personally I strongly believe my pain is caused by Urachal remnant that is "normal" looking just like in your case and my US scan is not correct, therefore it will be harder for me to get it removed. You know why I do not believe my recent US? For many years all my scans of abdominal area and bladder didn't show anything and now all of sudden there is something there. Either my Urachus thickened over the years or my previous doctors were blind - could be, because as far I know they never took my research seriously, well they even were sure Urachal abnormalities are asymptomatic... After years of false culprits and being ignored by specialists I don't want to get my hopes up even if I'm way too sceptical.

To be fair my current urologist believes in every story from this page, but I'm not sure if she will be the one to do procedure or if she will refer me to someone else. I will discuss it with her in March after my MRI.

Yeah, so I have to go thru that MRI, because of this structure under my abdominal muscles and also here in Poland you have to get all noninvasive tests before they open you up, so nothing I can do about it really. Anyway I just did create facebook group called "Urachal Remnant" with picture of 4 generic abnormalities of Urachus. I hope I didn't mess anything up and you can find it easily. My fb picture is just a guy in a blue jacket and brown trousers next to billiard table :)

Have joined your group. Will be great to connect for real :)
FYI - I am the other 'friend' who had the surgery 6 months ago.

Hi all
Really horrible tough times but I still thought I'd write on here. I believe the urachal remnant may be caused by birth trauma. A shock at birth with the cord clamping done too quickly. This might account for the trauma feelings. I have been gradually releasing the pain through tensing and releasing. Also I saw a trauma release specialist who encouraged me to soften, gently open the navel. I also have used Arnica massage balm. I couldn't have surgery at this such a difficult time even if I wanted it. I never really did so I will continue to try and release when i'm calm enough as I'm in my flat now. I wrote, as Jon74, more about this on the thread - Abdominal pain from the belly button through the penis...