anyone here have endo on their bladder?

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 (symptoms) 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 (symptoms) 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.

[elva555]

OK so I have endo and pcos and constant pain even when i stand up i can feel pain on my right ovary getting pretty tired of it anybody know what thats all about? its only on one side and i only have half an ovary on my left. I think i would be able to feel pain on both sides but its only on my right side
ANswers please
elva

[elva555]

Would anyone know why i only have pain on my right ovary all day everyday have endometriosis and pcos and its only one side

[ALT76]

elva555- Endo can grow anywhere, and pain can absolutely be limited to one side or the other.  Have you had an ultrasound recently?  It could also be an ovarian cyst.

[elva555]

Yeah i did have an ultrasound in december and i am finally going to get those results my old doc decided to be stupid never called me after two weeks with the results the office lost my file and she went on vacation told the nurse she wanted me to come in but not until february. So had my results transfered over to a new doc and will read them to me tomorrow. Probably will have to have a lap just to see how bad endo is and refuse to go on lupron because of all the side affects.

[ALT76]

I hear ya on the lupron!  I refused too!  I hope maybe it's "JUST" a cyst which can resolve on its own.  Keep me posted or let me know if you have anymore questions!  

[elva555]

well just found out i am going to have a laproscopy and was told i had 3 choices after surgery do nothing birth control or lupron, Doc said i may not have pcos anyway because pcos does not cause pain, but on ultrasound i did have a cyst that was dissolving. She said that I do have endometriosis but wants to confirm and told me that women with a tilted cervix do have endometriosis. well they better find at least some endo because if they dont i dont want to seem crazy

[twobings]

I had endo on my rectum...I know that sounds gross but it happens. All the organs in that region are so close to each other that it found it's way to that area.  So, I wouldn't be surprised if I had endo on my bladder too.  I have always had the urge to pee a lot, especially at night.  

[91becca]

I have stage III endo and had it not too severely on pretty much everything except my fallopian tubes, including my bladder. Since my surgery I've needed to pee a lot faster than usual.. I can still hold my urin just as long, but it becomes uncomfortable as soon as I need to go a little bit, which often isn't actulaly very much liquid at all.

Endo has been attributed to causes minor to major issues with the organs/tissues it's growing on in a lot of different cases.

My childhood lactose intolerance is back as well since my surgery, and the worst endo was on my stomach. Coincidence? I've looked into it and it could very well be irritating my stomach enough to make it more sensitive, just like with our bladders.


I've just started bleeding again with all the pain after 11 months after my laparoscopy and endo removal, if that helps you relate your endo growth speed etc with yours.. but yeah it's very plausible and has happened.  ANNOYING much? :( As if it's not bad enough without other problems happening!

[achilles2]

In 2007 I had a lap and a cystoscopy w/hydrodistesion. I had endo on my bladder, ureter, and interstitial cystitis (IC). Plus I also had it all over my bowels (he even had to removed my appendix) and rectum beside the usually places like the ovaries.

For the IC I was given a script for Elmiron, the difference is night and day. Plus there are foods I avoid because I know that it will aggravate my IC. For those of you who think that you might have IC do not let the doctor talk you into the potassium chloride (or KCL) test. As this test is unreliable. I had it about 2 years before my cystoscopy and it came out negative, that doctor even said that positively w/o a doubt I did not have IC, when in fact when I had the cystoscopy, performed by different doctor, my bladder was so inflamed it was white (there was no infection).

[Allannah]

Hi there, yes I have endo on my bladder and did have six months after my son was born, when I couldn't sleep because I had to pee. I had no idea why as I was only diagnosed this year.

I found magnesium supplements were excellent with yoga and meditation. It really does work, as the more you worry about it the worse it gets.

[lob02]

Dear ALT76,
I have the exact same symptoms you have. I have been diagnosed with bladder Endo after a cytoscopy. Doctors had treated me for 8 months for UTI!!! tons and tons of antibiotics and nothing worked until I visited an urologist who performed a cytoscopy and bam!! it was all clear, my alleged UTI's never went away because they were not UTI they were bladder endometriosis. I have yet to visit my OB since the urologist said he cannot treat a gyno problem, so I have scheduled a visit for next thursday. I hear that there is a hormonal treatment before the resection option...I'm not sure I want to undergo a hormonal treatment if this can go away in a one  day surgical treatment...but we'll see...

[blaz26]

I am very familiar with this feeling.  I was told after my laparoscopy  that I had endo on my bladder, in fact the constant need to pee was one of my first symptoms.

My surgeon would not remove the endo from my bladder because he said there too much of a risk of damaging the bladder with the laser.

Although I have had surgery, chemical menopause, hormone treatment and now an IUD I still have that urge to pee all the time.

Just like you sometimes I go and almost nothing comes out, even though it feels like I'm going to burst.  Other times with the same feeling I actually do have to pee.  This symptom has really effected my life.  I get up to pee at least 4 to 5 times a night, which obviously disrupts my sleep.  During the day I go pee every half hour because on average that's how often I get the urge.

My friends hate going on road trips with me because of the frequent stops.

Here's what has helped me.  Firstly training my mind to control my bladder...I will have that bursting urge, and I will tell myself, it is not possible that you are bursting you've only had one glass of water in three hours...then I reassure myself that I will not pee my pants even though it totally feels that way.  That seems to help over time with a lot of mindful practice, but it is very uncomfortable.  

At night to try and ease both my pelvic pain and the constant urge to pee, I will often sleep with a hot water bottle on my pelvis. This seems to help.

And on road trips (I really jumped for joy when I figured this one out!) I eat a lot of beef jerky!  It is so salty it makes your body retain water so much, that your bladder has almost nothing in it!  

Also so as not to exacerbate the situation, I stay clear of diuretics like caffeine at all times.  

Okay, so I've been dealing with this for about ten years now.  People make fun of me for having a teacup bladder.  I wish I could give you an absolute solution, but that's all I've got.  Over the years I have just come to terms with this uncomfortable feeling, and it's just a part of my life now.

I'm sorry you have to deal with this.  I hope you find a solution. :)

[leeamanda]

hey there,
i just wanted some insight into Endo on the bladder. I have frequent back pelvic pain and back pain and it gets to a point where i can't stand up any longer. I also have urges to urinate a lot and sometimes it gets to the point where i can't hold it in anymore :/ the only reason i know about this is because it runs in my family and i just thought i would check it out.

suggestions would be great. thanks :)

[anamary]

hey alt76,

I just got diagnosed with endo on my bladder but before that they diagnosed me with interstial cyctitus. What really helped me was following the ic diet and really figuring out what foods cause my bladder to hurt. I found sour cream mushrooms and chocolate really get so I avoid them. I had the same problems as you always feeling like a had a uti but the test always coming back negative. I ops this helps, please ask anymore questions and ill try to answer them, I've Been down a long road with bladdder issues my whole life.

[ladyinred48]

MY tube was connected to my bladder from endo. I'm 47 and had a full hysterectomy. they can get rid of it but it keeps coming back, then the cyst start to grow. I personally have been dealing with this for about 25 years. my best advise to everyone is Google Dr. Lee. he has all your answers and the ones your Dr. doesn't know. and also Google Happy PMS. I have been in severe pain all those years with no pain meds. I don't have children due to to the endo.


good luck
Carolyn  

[am511]

I would look into interstitial cystitis. I had similar symptomes and they diagnosed me with IC. just a thought!!

[jess4412]

I have endo on the bladder (and left ureter), so I know ridiculously frequent urination and urgency like nobodies business.  My doctor's were SURE they would find IC, but cystoscopy showed I have a very healthy bladder (on the inside :P).  Laporoscopy confirmed endo was on the bladder and ureter, which was considered to be causing the urination issues.  

It feels like I can't hold anything I drink! I drink a glass of water and within 10-15 minutes I have to pee! And then I usually pee two more times from that same glass of water!  It's crazy and I HATE it. You might consider looking into pelvic floor dysfunction.  A lot of women with endo develop that (your muscles loose ability to properly coordinate/remain in spasm (they call it high-tone in the muscles), and that pressure/lack of proper coordination can make urinary frequency even more of a problem.  


So my question to all of you ladies with endo on the urinary tract:  Anyone else have it on the ureter?! Because I can never find adequate info on it, and it's always burning in my brain that it's there! (They didn't remove it, due to risks of blockage, which could lead to kidney damage).  But I always can't help but wonder if that's why my pain and symptoms continue to reoccur.  It's been almost 15 months since the lap and I'm still having so many problems, as I have been since 6 months after surgery.  My pelvic floor always flares up on the left side, and that endo is still there on that left ureter, and that just doesn't seem like a very good situation to remain in...

  

[achilles2]

I am sorry that you are still having problems. I have endo on my ureter and bladder twice (besides having IC) and both times my surgeon (and endo specialist who travels the world teaching and is on the endo assoc board) removed it off both the bladder and ureter. There is an endo guy in PA and here is the link if you would like to contact him. You can leave a message on his site and he get back to you. (I know someone who did this and he called her, even though she was in another state.)
http://althysterectomy.org/meet_dr_toaff.htm

Or you can contact the endo assoc to see if they would recommend. If you can get to NY I would recommend Dr. Nezhat he is one of the best in the world!
http://www.nywomenshealth.com/md-farr-nezhat-st-lukes-roosevelt-hospital-new-york.htm

I hope this helps,
achilles2

[jess4412]

Thanks achilles2 that is very helpful. Where in PA?

[achilles2]

Michael E Toaff MD
1201 County Line Road Suite 100
Bryn Mawr, PA 19010
Phone: [phone]

[jess4412]

Thank you for that info achilles2, that's actuallly really close to me!

[achilles2]

You're welcome. I am glad to help.

[JulieStremfel]

I have the same thing, It feels just like a UTI, EXCEPT I don't make it to the bathroom, which is only 5 feet from me. and it pushes on my bowels, and they just come out, Sometimes I don't even know it. That's a nightmare. I have Scare Tissue. I always have to have a D&C every 12 mos. Now that I have been in menopause, and my Cervix is so small, the scare tissue is harder and harder to get to, I can't get a Dr. to give me a Hysterectomy. Even though I bring them my Med records for the past 15 yrs. I also swell with water, that seems to puzzle them. I have been check for Heart Failure and Diabetics so many damn times. and everything else. I'm in perfect  Health so you would think they might say, maybe she's right....BUT NO, They let me suffer, it's ruining my life. You would think I was asking them for a Boob Job. I JUST need a Hysterectomy, then no more scare tissue ever again! So far it's hopeless... I just had a D&C 2 DAYS AGO, SO i could get out of bed, the pain gets so bad.... now I'M GREAT, but it won't last very long, then I'll be ther once again ;(

[achilles2]

Julie,

I am sorry that no doctor will listen to you. I know of two endo specialist in the area that I would recommend one is Dr. Cook:
https://www.vitalhealth.com/

and the other is Dr Cameron Nehzat-- he is one of the worlds best endo specialist.
http://www.nezhat.org/

I hope this helps,
achilles2

[meamq]

Does anyone know of an excellent endo specialist in Sacramento?  

[beth595]

Does anyone know of an Endo Doctor in South Florida or anywhere in Florida?  I have the worst right ovary pain.  My bladder and right ovary are stuck together. I had 3 laps.  Nothing helps!  Always have urgency, painful urination, up all night peeing.  ***** so bad!  I just want it out already!  Scheduled at urologist for  Cystoscopy.  Totally interferes with my sex life that is becoming nonexistent these days.. Have had all this since my first period, 14 yrs old.  Infertility too.  This is curse  :((