BT2008
10-01-2008, 09:38 AM
For years I have been “potty dependent,” in that I often had a frequent need to urinate, usually every 20-30 minutes. This symptom had just become a part of my life; my hubby and friends all knew that I would always have to ‘go pee’ before leaving for even a short car ride. It never occurred to me to seek medical attention for this problem.
On June 14, 2008, I was sitting in my easy chair reading a book and enjoying a glass of iced tea. Suddenly, I had acute pain in my lower pelvic area. Initially, I thought it was a bad yeast infection. After seeing my GYN, however, that was not the case. Nor was it any other bacteria or virus that she could isolate. It felt like I was having a really bad period everyday. My most pressing symptoms were constant cramping right above and behind my pubic bone radiating into my groin area, pain and pressure in my perineum region, achy pain and discomfort in my upper thighs, pressure and pain when urinating or having a bowel movement. After a few weeks of this—everyday, all day long—I knew there was something really wrong.
The following represents a long-story made short. Over the following three months I had the following tests:
•Ultrasound of pelvic area to check for possible problem with ovary regrowth (I had a partial hysterectomy in 1985, and the final ovary removed in 2002). The ultrasound was negative.
•CT scan, with contrast medium, of both abdomen and pelvic areas. No tumors or other abnormalities were indicated.
•Because they found extensive abdominal adhesions when I had my final ovary removed in 2002, a surgery that was also driven by pain, I thought I had adhesions again. After another laparoscopy, however, there were no adhesions to be found, and no other abnormalities were indicated. The surgeon suggested I see a Gastro doc for a colonoscopy.
•I had a colonoscopy 2 weeks later. No polyps or other abnormalities were found.
•After reading about “referred pain” I even went to see my orthopedist about a possible worsening of a sciatica problem I have had for years. I had two MRI’s performed on my lumbar and sacral region as well as my pelvis. Other than finding moderate Spondylolisthesis, which my orthopedist did not think was causing my pain, there was no other discernible reason evident for my problem.
At this point, I had stopped drinking coffee, tea, juice—anything except water and milk. A heating pad was my constant companion and a life-saver. I think I would have gone “nutsoid” without at least the comfort that the heating pad offered. Of course, as soon as I was away from the heating pad for even just a few minutes, the pain came roaring back. Now I was not only “potty dependent” but also “heating pad dependent.” (A long extension cord allows me to move around from place to place!!)
At this point, I must admit, it had never occurred to me (or my GYN) to see a Urologist. I had no symptoms of a UTI or anything that I (or she) connected with a UT problem, except—that the painful cramping in my pelvic region worsened with a full bladder, plus extreme pain at the onset of urination (no burning with flow, however), followed by extreme pain after my bladder was emptied. So, as a last resort, my GYN referred me to a urologist. Four days after my initial appointment, he performed a cytoscopy and bladder distention. He diagnosed me with IC.
Over the following two weeks, I had no relief of symptoms (apparently the bladder distention didn’t help in my case). I was still in extreme pain most of the time. I have not had a good day—a totally pain-free day—in over 3 ½ months; I am lucky enough to have a few good hours everyday.
I found this website and modified my diet according to the IC diet—yep, NO CHOCOLATE even—and waited for my next appointment (he had already given me a prescription for Percocet for the pain, but this only brought relief for 1-2 hours after each dose, and he had not given me enough to take more than 1 per day). So, I still suffered most of the time.
I went back for a two-week follow-up this past Monday. He prescribed for me the standard stock prescriptions (as I have learned about here):
Elmiron Cap 100mg three times a day
Amitriptyline Tab 50mg to take before bed
Percocet Tab 5-325mg to take as needed for pain (but encouraged to use sparingly)
I had read, of course, that the Elmiron might take up to six-months to work, so I started taking it as soon as I returned home (even with my insurance, it cost $104.00, so I thought, this stuff better work!). I am choosing not to take the Amitriptyline just yet; I want to give the Elmiron time to get in my system before I add the Amitriptyline. I also do not like what anti-depressants do to my brain, so on principle I am not looking forward to taking it. But, if needs be, I will.
Yesterday (Tuesday), I actually had a pretty good day—which surprised me because I thought it would take much longer for the Elmiron to work. I was really hopeful that I had finally found a solution to this horrible ongoing problem! Unfortunately, the pain came roaring back in the wee hours of this morning, and I am miserable once again, even as I sit here and write this post.
I have rarely left my house this entire summer; walking for more than just a few minutes makes the pain worse, as well as driving my car, or even riding very far with my hubby driving; sexual intercourse is very painful after the fact, and having an orgasm by any means really sets it off :(.
I had resigned my position as a book editor right before this devastating disease hit me in order to finish a book I have been working on and to free-lance on the side. As it turns out, my resignation was just as well, because I wouldn’t have been able to work anyway—my pain level is that debilitating. I am now in great need of contributing to my husband’s income because my insurance deductible went up to $5000 on August 1, and now I am overwhelmed with medical bills. As soon as I get this pain under some modicum of control I must generate some free-lance work out of my home.
This is, needless to say, a horrible disease. I have felt my share of hopelessness, frustration, and anger throughout the past few months. And, I am still not looking forward to the future.
I have found a lot of answers to my many questions on this website; so Jill, et al, thank you very much for providing this very valuable resource. While I do have a few more questions, I will post them in the appropriate threads. I hope my story will help others experiencing these symptoms to seek urological help. Being able to "put a name to it" has helped a great deal intellectually, if not physically.
Another sister in pain,
~Beth Thompson
On June 14, 2008, I was sitting in my easy chair reading a book and enjoying a glass of iced tea. Suddenly, I had acute pain in my lower pelvic area. Initially, I thought it was a bad yeast infection. After seeing my GYN, however, that was not the case. Nor was it any other bacteria or virus that she could isolate. It felt like I was having a really bad period everyday. My most pressing symptoms were constant cramping right above and behind my pubic bone radiating into my groin area, pain and pressure in my perineum region, achy pain and discomfort in my upper thighs, pressure and pain when urinating or having a bowel movement. After a few weeks of this—everyday, all day long—I knew there was something really wrong.
The following represents a long-story made short. Over the following three months I had the following tests:
•Ultrasound of pelvic area to check for possible problem with ovary regrowth (I had a partial hysterectomy in 1985, and the final ovary removed in 2002). The ultrasound was negative.
•CT scan, with contrast medium, of both abdomen and pelvic areas. No tumors or other abnormalities were indicated.
•Because they found extensive abdominal adhesions when I had my final ovary removed in 2002, a surgery that was also driven by pain, I thought I had adhesions again. After another laparoscopy, however, there were no adhesions to be found, and no other abnormalities were indicated. The surgeon suggested I see a Gastro doc for a colonoscopy.
•I had a colonoscopy 2 weeks later. No polyps or other abnormalities were found.
•After reading about “referred pain” I even went to see my orthopedist about a possible worsening of a sciatica problem I have had for years. I had two MRI’s performed on my lumbar and sacral region as well as my pelvis. Other than finding moderate Spondylolisthesis, which my orthopedist did not think was causing my pain, there was no other discernible reason evident for my problem.
At this point, I had stopped drinking coffee, tea, juice—anything except water and milk. A heating pad was my constant companion and a life-saver. I think I would have gone “nutsoid” without at least the comfort that the heating pad offered. Of course, as soon as I was away from the heating pad for even just a few minutes, the pain came roaring back. Now I was not only “potty dependent” but also “heating pad dependent.” (A long extension cord allows me to move around from place to place!!)
At this point, I must admit, it had never occurred to me (or my GYN) to see a Urologist. I had no symptoms of a UTI or anything that I (or she) connected with a UT problem, except—that the painful cramping in my pelvic region worsened with a full bladder, plus extreme pain at the onset of urination (no burning with flow, however), followed by extreme pain after my bladder was emptied. So, as a last resort, my GYN referred me to a urologist. Four days after my initial appointment, he performed a cytoscopy and bladder distention. He diagnosed me with IC.
Over the following two weeks, I had no relief of symptoms (apparently the bladder distention didn’t help in my case). I was still in extreme pain most of the time. I have not had a good day—a totally pain-free day—in over 3 ½ months; I am lucky enough to have a few good hours everyday.
I found this website and modified my diet according to the IC diet—yep, NO CHOCOLATE even—and waited for my next appointment (he had already given me a prescription for Percocet for the pain, but this only brought relief for 1-2 hours after each dose, and he had not given me enough to take more than 1 per day). So, I still suffered most of the time.
I went back for a two-week follow-up this past Monday. He prescribed for me the standard stock prescriptions (as I have learned about here):
Elmiron Cap 100mg three times a day
Amitriptyline Tab 50mg to take before bed
Percocet Tab 5-325mg to take as needed for pain (but encouraged to use sparingly)
I had read, of course, that the Elmiron might take up to six-months to work, so I started taking it as soon as I returned home (even with my insurance, it cost $104.00, so I thought, this stuff better work!). I am choosing not to take the Amitriptyline just yet; I want to give the Elmiron time to get in my system before I add the Amitriptyline. I also do not like what anti-depressants do to my brain, so on principle I am not looking forward to taking it. But, if needs be, I will.
Yesterday (Tuesday), I actually had a pretty good day—which surprised me because I thought it would take much longer for the Elmiron to work. I was really hopeful that I had finally found a solution to this horrible ongoing problem! Unfortunately, the pain came roaring back in the wee hours of this morning, and I am miserable once again, even as I sit here and write this post.
I have rarely left my house this entire summer; walking for more than just a few minutes makes the pain worse, as well as driving my car, or even riding very far with my hubby driving; sexual intercourse is very painful after the fact, and having an orgasm by any means really sets it off :(.
I had resigned my position as a book editor right before this devastating disease hit me in order to finish a book I have been working on and to free-lance on the side. As it turns out, my resignation was just as well, because I wouldn’t have been able to work anyway—my pain level is that debilitating. I am now in great need of contributing to my husband’s income because my insurance deductible went up to $5000 on August 1, and now I am overwhelmed with medical bills. As soon as I get this pain under some modicum of control I must generate some free-lance work out of my home.
This is, needless to say, a horrible disease. I have felt my share of hopelessness, frustration, and anger throughout the past few months. And, I am still not looking forward to the future.
I have found a lot of answers to my many questions on this website; so Jill, et al, thank you very much for providing this very valuable resource. While I do have a few more questions, I will post them in the appropriate threads. I hope my story will help others experiencing these symptoms to seek urological help. Being able to "put a name to it" has helped a great deal intellectually, if not physically.
Another sister in pain,
~Beth Thompson