anyone here have endo on their bladder?

[ALT76]

I was just at my dr today, because I thought I had a UTI over the weekend when I got my period, and the test was negative.  I have endometriosis (and PCOS) and since last Friday I have had a CONSTANT urge to pee.  When it came on the urge was definitely the worst, and since then, there's times when it's worse than others, but it's always there to some degree.  I just started taking the pill for the first time in 7 years last Wednesday when I got my period, so I was hoping maybe this was some weird side effect or maybe the pill was causing interstitial cystitis.  I have no actual pain urinating or burning, but I ALWAYS have pelvic pain.  Something that I've lived with for a long time with the endo and cysts I keep getting.  It has been worse than ever lately.  I don't necessarily think this doctor is right - which is why I'm here asking for your opinions.  He thinks that the constant urgency to urinate is from endo growing on my bladder.

Does anyone here have this problem?  If so, how did it start for you?  From what I read, it sounds MUCH worse than what I'm experiencing - I have no blood in my urine or pus, and no pain urinating.  Just the urge.  I'm sure everyone's different, but I'm just wondering if those are more advanced symptoms and it can start out with just an urge?  This wasn't my actual doctor - my dr is on vacation for the week so this guy is the other obgyn in his office.  When I got the UTI test over the weekend from my GP, he prescribed me some pills to relax my bladder to keep it from spasming.  They really helped at first, but now they just help a little.  

I can't take this having to pee feeling, so if this is what it is then I'm wondering if I should push for a cystoscopy?  They've been trying to get me to have another lap for some time now, but my last one was just 9 months ago, and I can't afford to take off of work again, so I'm trying to hold off.

Let me know what you think if you have endo on your bladder (or any other opinions are obviously welcome!)

thanks

[stylez37]

I'm not sure how much I can help, as I have yet to be diagnosed, but I have that definite urge.  It started about a month ago.  All my symptoms have come along slowly since about June.  Still waiting on a lap but my Dr is positive endo is what I have (transvaginal US didn't show much).  He thinks there could be adhesions on my bowel and bladder.  

Somedays I feel as if I have to go every 10 minutes.  Sometimes I go full force, sometimes it is just a trickle.  It's like I dont empty it all out the first time.  I also get up quite a few times in the night now.

Let's hope you get the answers you are looking for!  

((hugs))
Romnie

[PPhelps]

I don't know how much help I'll be for you, cause it was such a long time ago. I had endo on my bladder. The doctor said it was unusual, for it to be localized there. It was between the bladder and uterus. I don't remember any need to urinate, but I remember the pain of going to the bathroom. That's something I'll never forget. It also hurt to have a BM. Have you had a TVUS recently, or seen a urologist?

[ticked]

I had to have a bladder resection and i still have the urge to urinate to this date. I cant stop feeling that way. I always have to rush to get there and nothing comes out or I feel like I am going to pee my pants.  The one thing that i need to do is see a urologist.  I know that I might have Interstitial Cystitis.  Which is very common for people to have if they have endo.  I didnt have blood or pain i just have pressure down there and that started after I had my daughter and the use of the cathader after the epidural. I have never been the same since.

[dnikki0928]

Hey ALT!
I have endo on my bladder (ugh!) and my last lap was in Jan. I'm starting to get the urge where I feel like I have to pee all the freakin time, but then there is little that comes out! I don't think much can be done since my endo always comes back...  I don't have blood or anything like that either, but I know what just about every pain is and what it's from and I guess I've learned to live with it. I know when I get my laps and they mess with my bladder, for like a week straight I won't be able to feel when I have to go until I am about ready to pee myself! I have now learned that when I get laps to toilet myself about every two hours LOL!
This may not have helped much but just know that you are not alone and if you have any questions or just need to talk or rant or cry, I'm here!

Hugs :-)

[ALT76]

Thank you all for your responses!  It's very difficult to find anyone with this problem so I appreciate your input!

Did any of you who were diagnosed have a cystoscopy?  I've read that's how they can tell whether it's interstitial cystitis or endo.  Or did all of you get dx'd when you had a lap?

Romnie - I hope your lap goes well!  best of luck to you!

PPhelps - I have not been to a urologist yet.  I just had an TVUS last Weds and everything looked normal.  I've had 3 ovarian cysts (one grapefruit sized that I was supposed to have surgery for but it ruptured) in the past 2 months, so I practically get a tvus every other week these days!   I've always had pain with bowel movements, even since before my first lap, and this week I've started having some pain sometimes when I pee - the pain is in my belly, not my urethra

ticked - what is a bladder resection?  I'm sorry for you - it doesn't sound pleasant.  Do you also have endo on your bladder?  Or is it from all the other stuff?

dnikki - how many laps have you had?  My docs have been trying to get me to have another for months now, and it's only been 9 months since my last one.  I would REALLY like to hold off, but I feel like every week my pain gets exponentially worse.  It's really frustrating.  Last night I was in the middle of cooking dinner and had such dibilitating pain shooting down my thigh from my pelvis that I was reduced to tears in seconds (and I can tolerate a WHOLE LOT of pain like cyst ruptures without crying!)...then it just POOF! ...went away after about a minute.  That kinda stuff happens on a daily basis now to some degree (but last night's episode was more painful) and seems to be getting more and more frequent.  Before my first lap, it was really just period pain.  Now it's all the time.  I've had 3 ovarian cysts in the past 2 months as it's been getting worse, so I'd hoped it was mostly from the cysts.  But I just had an u/s less than a week ago, and I had no cysts and everything looked fine, so I know its the endo.  And now it's starting to occassionally get uncomfortable when I pee.  It hurts in my belly - not in my urethra.  I've been having pain with bowel movements even before my first lap, so that's nothing new - but this is.  Just wondering how many surgeries you've had so far

[dnikki0928]

Hey ALT,
Sorry I didn't get back sooner... I've had 4 laps and they don't want me to have anymore until I'm ready to have a hyster. I know exactly what your talking about - bowel movements and all. It doesn't seem like I feel every time I go #2, but it's there more times than not. I can't really explain the feeling - but it's like it hurts my insides to go.. idk. I've never had a problem with endo on my colon and that though. I'm not sure if they routinely check the colon or not...? I remember for one lap that it was only about 8 or 9 months apart... I hope everything turns out okay with you and let me know if you need anything.

Hugs and Love :-)

[fedupwithendo]

Boy, does this sound familiar!

Yes!  I've had major bladder issues.  Back in 1990, I had a lap where a small amount of endo was removed off the bladdar, as well as my female organs.

18 years later, I'm back to square one.  The bladder has been my main source of urgency and PRESSURE.  It always feels as if I have to go pee.  Sometimes the pressure becomes so overwhelming, that it literally feels as if I have something falling out of me (similar to the pressure of a baby at the end of the 9th month)!

I had surgery last week for a big nugget of endo found in my vagina. I'm convinced it has traveled all over.  Now, I need a lap done.  My problem now is finding a specialist in my area.  My GYN admits he is not an endo specialist.  I may have to travel out-of-state.  I'm definitely not the niaive young person I was 18 years ago. I refuse to let these GYN's touch my organs without extensive experience / knowledge of the disease.

Definitely have that checked.  I went to 4 GYN's and three Urologists.  Had every test imaginable (kidney stones, cancer . . . you name it).  It wasn't until this "nugget" was found that they actually realized what I had / was dealing with?  Nice, huh. Now you know why I don't trust them for the endo!

Good luck!  

[PPhelps]

I just read on another thread that if endo is on the bowel to fully get rid of it they would have to do a bowel resection. Most doctors that not being there area of expertise would not do that, but just lazer it off maybe missing some. So that might have something to do with the painful BM's.

My pain with the endo on the bladder, was like I was being ripped apart for just having to pee. It wasn't the uretha either. It didn't burn when released. It hurt like hell. To the point of crying.

I personally think endo is caused by hormonal imbalance of too much estrogen and not being properly balanced with progestrone.

[rootietootie]

I too have endo on my bladder.  I had a hysterectomy for stage 4 endo.  My doctor was so ignorant he put me on hormones afterwards with the reasoning they weren't as strong as the estrogen my ovaries made so it wasn't enough for the endo to grow.  My urinary symptoms continued after my surgery.  The doctor said he didn't know what was causing it and he sent me to a urologist who wrongly diagnosed me with "overactive bladder syndrome"  He quickly put me on expensive medicine which also had a list of bad side affects that would wrap around your arms.  After doing a lot of research on my own online and in a medical library ( I am an RN) I found out that I am not crazy, or imagining things, bladder endo does indead cause these horrible symtoms of having to urinate constantly, and interfering with my life because I am on the toilet every 30 minutes at work and in the middle of the night, in the mall etc etc. etc.  After finding this out, I took off my estrogen patch and within a few weeks, my urinary symtoms were gone.  Recently the doctor put me on a low dose estrogen vaginal cream to prevent vag. atrophy.  He said it wouldn't cause any symptoms because it wasn't a large enough amount.  Well guess what?  I got the urine symptoms back BIG TIME.  I guess he was wrong about the endo dying off after a hysterectomy huh?  It has been two years and the endo is still there obviously, waiting for some estrogen to flare again.  There is sooo much doctors don't know about this disease and most of them are just plain WRONG about what they think they know.  As a nurse, I take everything they say with a grain of salt, they don't know as much as we give them credit for.  Be your own advocate.  Another thing I want to tell you guys is to make sure you take progesterone if you are on estrogen if you have endo.  Unopposed estrogen without progesterone causes endometrial cancer, and endometriosis is just misplaced endo tissue so even though you might not have a uterus, you still have uterine tissue so you need progesterone.  I am even thinking that since our bodies make estrogen (from fat) and we get it from outside sources. (exoestrogens) that we need progesterone anyway.  Maybe a low dose topical.  I am reading into all this now.  If anyone wants to talk about this, message me. Shannon

[ticked]

Sorry i didnt get back to you sooner. I had so much endo on my bladder and it was deep that had to remove some of it.

[LexiFaye]

For all of you who actually have endo on the bladder I'm just wondering if you have the problem of bed wetting?

I had a lap and I had lesions everywhere. I swear I could have them on my heart it seemed I had so many. I still have some in the bowel area that no doctor has ever been comfortable enough removing without turning the lap into a more intrusive surgery.

I have been told I have IC and I've been told that I have an overactive bladder, but I sometimes have the urge that it's bad to go to the bathroom, when I am sitting on the toilet, but I, at 24, have wet the bed quite frequently.

[TinaMarieTX]

When my bladder filled just a little with urine it felt like someone was stabbing me and I constantly had the urge to pee whenever even a little urine entered my bladder. When I had my first laparoscopy, they found endo on my bladder and intestines. When it was removed, I no longer had to take gallon sized baggies of ice with me to the bathroom and my bladder stopped hurting. After a few months it began hurting again. I had a hysterectomy exactly one year after my first surgery and the doctor was surprised to find so much endo all over my bladder and intestines again.

It has been 11 years since my hysterectomy, and although I have never had the painful bm's and bladder since, I now have increased urgency and incontinance. Not sure if it's due to the endo being burned off the outside of my bladder or from something else.

It definitely could be endo on your bladder, or it could be several other things. Have you had a fasting glucose test ot thyroid checked?

[hollandlop]

I have some small chocolate powdery endo lesions on my bladder flap, which was removed during my laparotomy.

I always had the urge to pee very frequently. I went to an urologist and he did a cystoscopy for me. He didn't find anything inside, no swelling, no growths, everything looked normal.

Right now, sometimes I still feel like I need to go pee, especially at nighttime, it feels like my incision site is pressing against my bladder.