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

[clear0707]

I had a rare form of endometriosis, bladder endometriosis. I want to share my experience of diagnosis and treatment, hoping to help other women with similar problems.
I started with discomfort during urination. It was mild at first and got worse quickly as each menstrual cycle progressed. Then other symptoms like frequent urination, nighttime urination appeared. I went to see my doctor and did some tests and excluded the possibility of urinary tract infection and diabetes. I didn’t know what to do as I was not diagnosed and it continued to get worse. Finally it reached my tipping point and I started to do more research. Because of my history of endometriosis in ovary, I began to suspect my urination symptoms are also related to endometriosis since my symptoms also had a cycle matching my menstrual cycle.
So I went to my urologist and insisted on a cystoscopy. He had never seen anything like that during 20 years of his practice. It was bladder endometriosis. Finally I was diagnosed. Unfortunately, there was not much information I could find related to bladder endometriosis let alone its treatment, as it is a much rare form and occurs in only 1% of all endometriosis patient (I read this somewhere. That is also the major reason I want to share my story here so that other women may find it helpful when they google “bladder endometriosis”.)
Since my urologist had never seen it before, he surely didn’t have experience of treating it. I did a search of doctors in the United States hoping to find a doctor who knows how to handle bladder endometriosis. After numerous calls, I was disappointed and almost gave up. Then I found Dr. Camran Nezhat. I read his scientific publications online and found out he had treated many sever, extreme cases of endometriosis. He is also the pioneer for minimal invasive surgery. He brought me hope and I contacted his team immediately and arranged my surgery right away. The rest was as smooth as it could be. I was treated thoroughly for all of my endometriosis lesions at numerous places. Dr. Nezhat was also able to treat other problems causing my infertility. Just several months after the surgery, I found myself pregnant!!! I cannot be happier.
In conclusion, if you have weird periodic pain and cannot find any other cause, think about endometriosis. After you are diagnosed, find a good surgeon who has good skills and knows how to treat your condition. For me, Dr. Nezhat is the best! I thank him from the bottom of my heart for giving me my life back.

[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  :((

[meamq]

Does anyone know of an excellent endo specialist in Sacramento?  

[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

[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]

You're welcome. I am glad to help.

[jess4412]

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

[achilles2]

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

[jess4412]

Thanks achilles2 that is very helpful. Where in PA?

[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]

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...

  

[am511]

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

[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  

[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.

[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 :)

[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. :)

[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...

[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.

[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).

[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!

[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.  

[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

[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]

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.