bladder endometriosis
i’m a 16 year old girl. I’ve had severe urinary frequency for just over a year. i feel like i need to pee always. I can hold it and manage to only go 60 times a day. I had a cystoscopy under anesthesia which showed bladder inflammation (ic). nearly none of my treatments for ic have helped though. i’ve had an ultrasound, mri, cystoscopy, ct. Would any of these see bladder endometriosis? I don’t have severe cramps and i have light periods so I’m not sure if this is it. I’m afraid to go to a gynecologist because my friend told me they try to look at peoples private parts and i am not comfortable with that no matter what so can a urologist give me a referral to laparoscopic surgery for this? Does anybody on here have bladder endometriosis? can kids even get bladder endometriosis?
I'm so sorry you're going through this. Many experts think people are born with endometriosis. So, it's possible to have it at your age. I also have IC, and a cystoscopy showed severe inflammation in the lining of my bladder. Though, I do not have bladder endo. I'm currently seeing a urogynecologist to treat my symptoms. Unfortunately, there's not a cure for IC, but you may want to ask your doctor about pelvic floor therapy. That's been the most helpful for me in terms of easing my urinary frequency. Also, most endometriosis specialists who can perform a laparoscopy will be OB/GYNs, and it can be really helpful to have a pelvic exam before a surgical attempt. These doctors are medical professionals who care about your health. If you're concerned about any of the exams, ask if you can talk to a nurse educator or social worker about why these tests are necessary. They can be scary if you've never had them before, but you may feel more comfortable if you ask your doctor lots of questions. And you can always have a loved one with you during any exam. Wishing you well! - Keri (endometriosis.net team member)
thanks for the reply. There would be no possible way I would let someone see me there I wouldn’t be able to forget that. The good news is i just looked it up to make sure and those exams aren’t even done on kids for endo so i might decide to go to one. I’ve tried pelvic floor therapy with no luck though. I'm sorry to hear pelvic floor therapy didn't help. And you definitely don't need to have an exam you're not comfortable with. You can always meet with a gynecologist or OB/GYN just to have a conversation. Good luck! - Keri (endometriosis.net team member)
one more thing, do you know if a cystoscopy or mri would have seen bladder endo? from what i’ve seen online a cystoscopy can diagnose it but i’m not sure if that’s true or not.
I'm sorry that you are dealing with this bladder problem. Cystoscopy could see bladder endometriosis if it is on the inside of the bladder, but not if it's on the outside. The other tests you've had can't see small areas of endometriosis.
Assaid, a gynecologist would be the person to do a laparoscopy, so you could start with an appointment there. You can for sure go see a gynecologist and tell them that you are not ready to have a pelvic exam, but you want to talk about your symptoms and figure out what to do. They can help you figure out a plan.
Please let us know how things go for you. Best wishes! -Audrey (endometriosis.net team)
