Hi All,
Was wondering if anyone has ever had bladder issues with Bahcets. I feel constant pressure, the urge to pee but not necessarily have to and throbbing. Have been checked out multiple times for UTI’s and all negative. Some days it’s non existent and other days it’s absolutely terrible. I have an appointment with the Urologist but it’s not until March. Thoughts?
Hi, I’ve been having bladder issues for years. No help from the urologist. I take Ural a lot as I feel the lactic acid buildup contributes to the pain. I’ve also in the past had to retrain my bladder to hold a normal amount. The bladder issues is one of the reasons I’m looking at taking taking LDN.
Yes, exactly as you describe, but also a warm / hot feeling with the urge to pee. Had this on and off for years. Keep a food and drink diary, as I think it is diet related.
Cutting out gluten completely made a massive difference, but then after about a year noticed tea was causing it, so switched to Rooibos tea. This made a difference too, but now this has started to aggravate me so have cut it out.
Nachos and tortilla chips also cause this, and the occasional mystery item if eating out.
Not getting up several times in the night to pee, sleeping better and waking up not knackered is well worth cutting out a few things.
Thanks for your reply. I’ve been keeping track of my liquid intake but not so much foods. I will keep this in mind to see if I can figure out what’s triggering it all.
Yep- fairly sure mine was related to sugar as when I went sugar free- the weird sensations went away. Also I stopped getting utis.
Yep, I’ve had problems with this. The Behçet’s killed my pituitary, which caused central Diabetes Insipidus, or “water diabetes”. Orange juice makes my condition worse, and lemonade calms things down. Haven’t a clue as to why certain foods aggravate it. The urge issues seem to run in longer-term cycles, lasting a year or more, but in my case it did get better.
Hi there, I have BD and am also a Physical Therapist in the US with a specialty in Pelvic Floor Rehab. I would also suggest you look into finding a PT - for Pelvic Floor Rehab who works in conjunction with a Urogynecologist. Often times they can help determine what is behind the bladder issues and does not necessarily have to be BD related. However, with this bizarre syndrome we have - I figure anything is possibly related to it! Especially if it involves inflammation.
Thank you for the info! I’ve read about PT for it, it’s always a good option
I thought I’d just mention that shortly after my Behcets symptoms started I had bladder symptoms. I saw a urologist and had a cystoscopy so they could see inside my bladder to ensure nothing physically was wrong with the bladder walls. (Didn’t see anything) They could’ve done some other test for bladder pressure but I opted not to because the doctor seemed confident based on my symptoms the pressure would be high: based on that information I was diagnosed with Interstitial Cystitis (inflammatory). Like Behcets it has no cure and I take medication to curb the symptoms. I feel pain &/or pressure if I hold it too long, and sometimes have the urge to go frequently even if not a lot comes out. It’s mainly painful honestly, but like all things you learn to cope 😊 I still deal with these symptoms if I’m not careful about what I eat or drink in addition to the medication but I’m definitely improved. And, I still always have trace blood in my urine- they say it’s just due to the IC. I thought I’d mention it in case it’s something you could look into. Good luck on your search for answers. 🌟
Thank you for the info. I see the urologist next week and I too want to make sure there was nothing physically wrong ... I figured it was the inflammation due to the Bahcets but I want to be sure. What meds are you on and do you take any meds for Bahcets?
I’m on Myrbetriq which treats overactive bladder and Hydroxizine which is an antihistamine. These are actually mild medications to be on so if your pain is really high this type of combo may not work but it’s nice because I don’t notice any side effects. The meds specifically for IC are stronger, I’m holding out on having to get to that level although sometimes I wonder if I should just do it because I still have some pain and symptoms. I just hate all the side effects of stronger medications. Also, I am on Behcets medications as well but don’t find those work for the IC at all. I literally can’t stop taking my bladder medications or I’d definitely have immediate worse symptoms. I hope this helps! 💫
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