This happened to me a lot in my teenage years. I had every test under the sun done. Some told me it was in my head. Finally, I went to a gastroenterologist and he looked at me and said, " there's only one other option, and I have no idea if it will work--but there's a ligament that used to be the umbilical cord and it could possibly be getting pulled too tight. We can snip it and see what happens" we readily agreed, as mine would last for days at a time.
And I swear, ever since that day over 10 years ago, it hasn't happened since. It was on a monthly basis for me. I could tell you which day because it happened 2 weeks on the dot after my menstrual cycle.
So, I saw someone above mentioned the ligament, but that's definitely what it is.
Hi there! It’s now almost been two years since my surgery and I can report that I have never had the pain since. It was definitely the culprit and having it removed has cured me. I can say the same for the other person in this forum who also had surgery not long after I did, who I am in contact with. She has also never experienced the pain again since her surgery. So, there is an answer everyone!!! It is so wonderful living a life free of this debilitating pain, and we want everyone else to know that it is possible, know what the pain is caused by, and get the help they need. If you want to chat further, please join our Facebook page called “urachal remnant”. We can connect and chat via fb and provide any more info you need. best of luck!
Hi there,
I am more than happy to give info on the surgeon, but perhaps not on a public forum.
We have a Facebook group called 'Urachal Remnant' if you'd like to come and join so we can all chat some more :-)
Hi! I am a 24 year old woman living in the UK and I have had the exact same "belly button pulling pain" that you all described for a few years. here is my story, still a work in progress.
Like many of you, my pain is triggered by doing certain movements (stretching after sitting down for a long time) and wearing tight clothes around the umbilical area. It causes an urge to pee, which makes it incredibly worse. I also have other urinary symptoms like increased urgency and frequency of urination, which might be related or not. It happens around every 2 or 3 months, I usually take a painkiller and lie down and it goes away after a few hours or a few days max.
After suffering from this pain for a few years and always being dismissed by doctors (with countless UTI diagnoses and subsequent antibiotics prescriptions with no evidence from urine samples), a few months ago I decided to go to a urologist, who first mentioned the urachus to me as a possible cause. I then did an abdominal ultrasound and was told that there is nothing and dismissed with an "overactive bladder" diagnosis.
Not convinced, I recently went to a urogynecologist, who suggested doing a urodynamics exam and a cystoscopy with biopsy. He also dismissed the umbilical pulling pain symptom and said that it could be referred pain from the bladder. After the cystoscopy I was diagnosed with chronic inflammation of the bladder, possibly due to interstitial cystitis/painful bladder syndrome and without any bacterial infection. Happy that I had finally got my diagnosis, I started a course of 12 bladder instillations with heparin, hyaluronic acid and other medicines that should hopefully repair my inflamed bladder. I am midway through the course now and unfortunately the same problem has happened again and I am not so convinced that it is entirely related to the interstitial cystitis, since many of you have also experienced it and had clean cystoscopies.
I am so grateful to have found this thread, because it seems like these are the only experiences similar to mine since there aren't many documented cases of urachal remnant problems other than stemming from obvious diseases like a cyst, a patent urachus and so on.
I am collecting some evidence to present to my urogynecologist next week, so I have joined the Facebook group and I am waiting to get accepted. It would be great to have some more information on the surgeon who has already removed the ligament/urachal remnant before, so I hope someone is still monitoring the facebook group and I can get in touch with some of you who are now pain-free.
Thanks for sharing all your stories here and I will definitely share my progress on this and push for more published medical research on the topic!
Replying to my 21 year old self for reference. It went away for years but I just moved to a cold and dry climate, just felt it today, while fasting and multiple days of consistent dehydration, and getting up from sitting in a lounge chair without cushion.
I still subscribe to the uracus thingy. Same trigger, sitting with bad posture (lately have a hunched back due to cold and lacking egonomics on the move) while being proper dehydrated.
For those with similar triggers, make sure your water level is maintained. I was hydrating from refills of 1L jug throughout the last 3 years in a hot and humid climate. If you get up from a sitting position, and get the shooting pain, curl up like a snail and stay that way for 2-3 hours, then slowly start opening and eventually stretching the abdomen / chest, if you wana pee, hold it as far as you can, because if you do it's gona hurt like a b***h. When better, get on your feet and replenish your body with good stuff.
This pain happens completely at random!!! And! Only once a year it occurred. Stretching, peeing, walking, everything made it worse but especially peeing!! Peeing made it 10x worse.. every time I have it, I would go to the Emergency Room. They would do urine and blood tests, and I had full body CTs, Xrays, and abdominal ultra sounds.. every test came back clean and they couldn't tell me what was wrong.... even referred me to gastroenterologist and urologist and none were able to ever help me.... gave me gabapentin when I was 16 and pain hasn't come back since....
⚠️ PLEASE READ!!! IT MAY BE HELPFUL TO YOU!!!! ⚠️
Hello friends, I have had this pain on and off since I was 12... it felt like a string was tied behind my belly button and someone yanked it really hard, and when I peed the pain was 10x worse! Pain would last all day long but only for one day and thank God the next morning it was gone
.. this pain came and gone at random times! And only once a year. Still don't know what it is. one time after a cat stepped right on my belly button the next day that pain struck. Haven't had a cat on my lap since then. Still extremely afraid every time I pee incase it does come back. It's been 3 years without this pain. Still have no cause. Every time this pain happened, i went to the emergency room. There, I had every CT, Xray, ultrasound, blood test, and urine test and every time all the tests were normal and showed nothing. Was even referred to urologists and gastroenterologists and they didnt help me. About broke into tears when reading these other people stories and knowing I'm not alone...
Let me tell you this, though.
I saw a pain management specialist when I was 17, because I was so sick of and afraid of this random pain. He did a test on me for a syndrome almost no doctors have heard of, and it's sad that many people suffer with it undiagnosed. It's called Anterior Cutaneous Nerve Entrapment Syndrome. It's a Nerve compression disorder. Nerve in your abdominal wall are entrapped and fire away with pain for no reason. The test was having me hold a "crunch" position and pressing on my abdomen while holding it. And if it hurts like hell when he pressed ona it, you have Anterior Cutaneous Nerve Entrapment Syndrome . And I was diagnosed with it. Given gabapentin, Nerve and muscle relaxer and haven't felt this pain since. Ask your doctors to refer you to pain management specialists and when you see pain management specialist, have them test you for Anterior Cutaneous Nerve Entrapment Syndrome. Hope this helps someone!
I know my story can help someone.. please read it! (Sorry my last one glitched and got all spaced out?)
This is my Instagram if you would please like to further talk about this... saturn.skye
Hello friends! I have had this pain on and off since I was 12... it felt like a string was tied behind my belly button and someone yanked it really hard, and when I peed the pain was 10x worse! Pain would last all day long but only for one day and thank God the next morning it was gone
.. this pain came and gone at random times! And only once a year. Still don't know what it is. one time after a cat stepped right on my belly button the next day that pain struck. Haven't had a cat on my lap since then. Still extremely afraid every time I pee incase it does come back. It's been 3 years without this pain. Still have no cause. Every time this pain happened, i went to the emergency room. There, I had every CT, Xray, ultrasound, blood test, and urine test and every time all the tests were normal and showed nothing. Was even referred to urologists and gastroenterologists and they didnt help me. About broke into tears when reading these other people stories and knowing I'm not alone...
Let me tell you this, though.
I saw a pain management specialist when I was 17, because I was so sick of and afraid of this random pain. He did a test on me for a syndrome almost no doctors have heard of, and it's sad that many people suffer with it undiagnosed. It's called Anterior Cutaneous Nerve Entrapment Syndrome. It's a Nerve compression disorder. Nerves in your abdominal wall are entrapped and fire away with pain for no reason. The test was having me hold a "crunch" position and pressing on my abdomen while holding it. And if it hurts like hell when he pressed on it, you have Anterior Cutaneous Nerve Entrapment Syndrome . And I was diagnosed with it. Given gabapentin, a Nerve and muscle relaxer and haven't felt this pain since. Ask your doctors to refer you to pain management specialists and when you see pain management specialist, have them test you for Anterior Cutaneous Nerve Entrapment Syndrome. Hope this helps someone!