My Bladder Almost Burst During Cystoscopy

[MelissaCrystal]

Yeah... I don't have much energy right now to describe the procedure (Bladder Endoscopy, Cystoscopy), but it was very painful, there was blood, and I'm still recovering from it. As soon as he started filling my bladder, I started panicking at the horrible pains it gave my insides---felt like my bladder was tearing and was going to burst. He diagnosed me with severe bladder sensitivity (which is supposedly why I can't hold any fluid and urgently pee every 20-30 minutes), but I'm thinking there has to be something wrong with my tissue that would cause my bladder to hurt that much while barely being stretched. Lack of collagen perhaps? Is this a possible symptom of Ehler's Danlos, does anyone know? I have other symptoms that may be related to it, mostly the magical dislocating hips and floppy ankles.

[pat57]

I can only tell you that I hear they are painful tests. My hair dresser had one. It hurt her,and the nurses confirmed to her, that it does.

Hope you feel better soon!

[morgan617]

I've had several of them and they are very painful. I have a very small capacity and they always overfill so they can get a good look. No matter whether you are healthy or not, cystos are never ever fun....as far as eds, I would think you would be more prone to having an atonic or insensitive bladder, but with what I know about it, you could put it on the head of a pin. morgan

[Maxine]

Cystoscopies are very painful for folks that don't have EDS.

Have you gone to an EDS specialist to see if you have EDS?

A geneticist who specializes in connective tissue diseases would be a good start.

I don't know how a cystosopy affects people with EDS, but I know some folks with EDS have some bladder issues. Usually those with upper spine instability, and cervical/cranial instability (CCI) who are symptomatic have bladder problems-----one of them being urine retention. I'm not sure is it's just the EDS, or if my spine instability and compression affects my bladder.

I have to push on it to see if I have to go because I can't feel it. I also have to lift one side of me while sitting on the toilet to get the pee to come out. My bowels are also affected and I don't get the sensation to go until my bowels are overly full, and this also gets in the way of my bladder. It's annoying if I'm trying to nap, because when I lay down things go back into place, and I have to pee sometimes 3 or 4 times.

I have the urine retention, but so far have been able to empty my bladder by laying down several times a day as suggested by the geneticist who ran the NIH study that I went to in April. Gravity is so hard on me, and really affects my spine. Apparently this causes MY bladder retention. Fortunately, I have not suffered one bladder infection.

Maxine :0)

[Sunfish]

sorry to hear your experience was so painful. i never realized how lucky i was to have an easy experience with the procedure, which was likely due to the fact that i have such extensive nerve damage in my bladder (requiring me to self-cath since it can't empty on its own).

hope you feel better after some rest & that you never have to have a cysto again!

melissa (the other one)

[MelissaCrystal]

Bleh, my doctor told me that the procedure wasn't going to be painful, just "slightly uncomfortable". I'm upset they didn't give me enough warning because it took me all week to recover, which they also didn't warn me about.

I'd love to be tested for EDS but I need a referral to see those doctors and I'm just not sure who do get the referral from because all my specialists have their own agendas and their own opinions about what is going on with me. I've brought it up before but they usually change the subject, trying to tell me what else it would be that is causing the symptoms---and I only run into dead ends.

I'll try and get a referral to get tested for it though. I'm glad you guys shared with me that it's common even with people who don't have EDS, so I'll try not to narrow my sights on EDS too much yet. Thanks guys =) As we all know, all of this is so frustrating.

[Maxine]

I actually got my referral from one of my specialists----

My insurance does not require referrals, but the EDS specialist did.

Good luck, I sincerely hope you don't have EDS. EDS is very serious.

Maxine :0)

[juliegee]

Hey Melissa,

Ouch! Been there too. I had one almost 20 years ago, when my husband was a young Naval aviator, done by a military urologist. It was pretty barbaric. The only relief they offered was a bit of lydocaine where they inserted the camera. OMG, horrible pain. My bladder was so sensitive at the time. I thought it was going to burst too. I remember being unable to get out of bed the rest of that day. I felt really violated. If I were to have that test again, I would demand versed. Didn't they offer you anything??? It makes me sad to think things (in terms of patient comfort) have progressed so little over all of these years.

About the EDS. One type of EDS makes organs prone to rupture. Type IV. I was recently tested. It's a simple blood test, only performed at one or two centers in the US. (My geneticist had to send my blood out.) Google EDS, Type IV to learn more. Hypermobility is usually not a sign, but types may overlap. Two of my brothers have had eary dissections/aneurysms and my son and I have oodles of symptoms. My test came out negative. My geneticist wants me to be tested for one other thing called Loueys-Dietz Syndrome, which also causes vascular and organ fragility.

Best of luck-

Julie