Endometriosis Support Group
Endometriosis is a common medical condition where the tissue lining the uterus is found outside of the uterus, typically affecting other organs in the pelvis. The condition can lead to serious health problems, primarily pain and infertility. A major symptom of endometriosis is pain, mostly in the lower abdomen, lower back, and pelvic area.
Hi, I'm new to this support group (and site). I am in serious need of support from people who can relate! I'm getting so hopeless!
So here's a quick summary of my situation: I was diagnosed with atypical endometriosis (an uncommon appearance she said she finds frequently in adolescent cases) about 2 years ago (at age 18) and had it successfully removed from my bladder and cul de sac area at the time of diagnosis. My doctor (a nationally renown reproductive endocrinologist who is very experienced with endo, especially in younger women) found endo on my left ureter, but left it unaddressed, as she said removing it at that point would have caused a higher risk for problems than keeping it there. About a year later I was having incidents of really intense pain. She diagnosed hypertonic pelvic floor dysfunction, and sent me to another recognized specialist to treat it (a uro-gyn). After about a year of really tedious treatment, the PFD is FINALLY gone! The muscle tone is perfectly normal, which is fantastic, however, I am still having pretty rough urinary symptoms and pain. I urinate usually between 8 and 15 times a day, and it gets urgent very quickly! Upon taking Uribel regularly, I noticed I am also leaking urine (it turns your pee blue!)... I have been have TERRIBLE left side pains that shoot down my groin, and lately I have been feeling crampy and very uncomfortable. I still can't sleep without a heating pad either...
So that's my situation, sorry it was so long! So I am wondering if anyone else on here has these kinds of symptoms? Any endo on their ureters? I just feel so in the dark about it theres not a whole lot of info.
So here's a quick summary of my situation: I was diagnosed with atypical endometriosis (an uncommon appearance she said she finds frequently in adolescent cases) about 2 years ago (at age 18) and had it successfully removed from my bladder and cul de sac area at the time of diagnosis. My doctor (a nationally renown reproductive endocrinologist who is very experienced with endo, especially in younger women) found endo on my left ureter, but left it unaddressed, as she said removing it at that point would have caused a higher risk for problems than keeping it there. About a year later I was having incidents of really intense pain. She diagnosed hypertonic pelvic floor dysfunction, and sent me to another recognized specialist to treat it (a uro-gyn). After about a year of really tedious treatment, the PFD is FINALLY gone! The muscle tone is perfectly normal, which is fantastic, however, I am still having pretty rough urinary symptoms and pain. I urinate usually between 8 and 15 times a day, and it gets urgent very quickly! Upon taking Uribel regularly, I noticed I am also leaking urine (it turns your pee blue!)... I have been have TERRIBLE left side pains that shoot down my groin, and lately I have been feeling crampy and very uncomfortable. I still can't sleep without a heating pad either...
So that's my situation, sorry it was so long! So I am wondering if anyone else on here has these kinds of symptoms? Any endo on their ureters? I just feel so in the dark about it theres not a whole lot of info.
I had endo on both my ureters. I had surgery november 9th 2012, they removed the endo on the ureters and a bunch of other places. But ive been having pain in my back lately and trouble urinating. I also get sudden urges of needing to pee. What ive done is about every 30-60 mins i push on my bladder with my hand and if i feel pressure i know to go pee, otherwise ill have to go so bad i might not make it!
I get those same pains but down my right side and into my groin
He also found a lesion on my bowel but left it because he didnt know how to work on the bowel. Im still having alot of bowel pain and likely have to get another surgery soon.
My regular gyno who is treating my endo is actually a uro-gyno. Ill ask him about it when i see him, im making an appt this week :-)
I dont know too much though, just that i had it on my ureters too
Sorry for the length! just didnt want you to feel alone :-)
Definately let me know how things go, I feel like there is such a small amount of info on ureter endo, it's so frustrating trying to figure out what is going on!
Does your Dr. talk to you at all about frequency of surgery? I feel like I always hear that it's best to get the least amount possible because of adhesions, but I get scared that it's going to grow back and cause problems if it gets neglected :/ I'm really curious to see what my Dr. says on friday, the last appoint I had with her in September she mentioned re-evaluating for another surgery. I'm so nervous! I'm moving out and far away to transfer to my dream school in the summer and I'm so worried all this mayhem will interfere :/
Im a little worried about adhesions but this bowel pain is so awful id go through anything to get rid of it. If that means another surgery and another surgical adhesion risk then...i guess thats what it'll take.
It just scares me because my aunt was in the same situation: endo and a lesion on her bowel and it got bad and i believe a lesion popped? if they can do that, and she nearly bled to death internally. Looked 9 months pregnant in an hour from all the blood. And lost 6 feet of intestines.
I trust my doc, i just wish he woulda took care of the lesion when he had me under for two hours 3 months ago. But, im also glad he didnt since he doesnt know how to work on the bowel.
Most say the fewer surgeries the better with endo, but on the other hand, sometimes endo really needs to be burned or excised and adhesions clipped. Its also good to see if the endo is getting better or worse, where its going, and what is the best treatment. You gotta find a happy medium with the surgeries. If you think you need another diagnostic laparoscopy then you should request one :-) or at least talk to your doc and see what they think
Unfortunately I can't relate to endo on the ureters...that's actually the only thing that my doctor specifically told me WASN'T covered in endo. I do, however, have terrible urinary pain and urgency and I also have to sleep with a heating pad. Sometimes the urgency hits out of absolutely nowhere and I find that I actually don't really have to go. The only thing that helps me in these situations is Vicodin. I think that I have a tough time distinguishing between pain and having to pee.
I'm also trying to get another surgery ASAP because the one I had in December was essentially useless other than removing a cyst. I recently asked on this board about surgery frequency and I got some conflicting answers. One woman said that she had her surgeries three months apart and another said that her doctor told her to wait at least five months between them. I have an appointment with an RE on 2/11 which will be two months and four days from my first surgery, and I plan to ask him to do it again ASAP. I'm interested to hear what your doctor has to say on the subject. Was your last surgery 2 years ago when you were initially diagnosed?
My pain has gotten better since my surgery. I still have issues with urgency, but I'm not in pain when I pee. I'm also on Lupron so since I'm not having a period that has helped too. The birth control pill did wonders for me. I had no pain or endo symptoms when I was on the pill, but since im ttc I can't be on the pill.
I am sorry you are dealing with all this... I also have a lot of intestinal pain and pelvic pain too. I was just in the ER due to severe pain. Had a CT scan and it found some uterine fibroids. Not sure what I am going to do about that.
Heating pad is great! I would die without my heating pad, it is my very best friend. It is the only thing that gives me some relief.
JThurts: I did have a cystoscopy to check for IC (my Dr. was so sure I was going to have it from all the urinary problems) but alas I did not.