Cheryl... Difficulty getting bladder adhesion diagnosis...

From: Jenny (
Tue Feb 4 04:39:11 2003

Hi Cheryl,

I am having problems getting a doctor to touch me because of the adhesions. After my gyn had done a rectocele and cystocele repair in July 2001, I went to see my gyn in October of 2001 because I was having pain in my right kidney and told him then that I couldn't empty my bladder. He sent me to a urologist. That is when I had the first cystoscopy. That Urologist told me that everything was normal and I wasn't forming kidney stones. He said he did stretch the urethra. Two months later, I was passing stones at my house. By April 2002, I felt something tear and could feel something had dropped again. So I went back to my gyn. He said that the bladder and rectum had dropped again , but since he had already fixed it once and it hadn't even lasted a year, he wanted me to see a different urologist. So I went to see Urologist #2 in May. He did another cystoscopy, stretched the urethra, ran the flow test, and checked me for interstitial cystitis. He's the one who said I had scarring on the urethra and it was much smaller than it should be. He said I had a cystocele, a rectocele, and an enterocele. Then he talked to my gyn, found out how many adhesions I had, and told me he wouldn't touch me. He sent me to Baylor College of Medicine in Houston to Urologist #3 in July 2002. This doctor came in with one doctor who was starting his residency, another doctor who is considered a "fellow" (I believe they have finished their residency), and his nurse. THere were 4 of them in there to for the examination plus my husband and me. They stood there with a flashlight shining it up my rear! It wasn't even an examination lamp! Two of them examined me laying down and then standing with one foot on a stool. They said I had a cystocele. He said there was no way that they would touch any adhesion if they did do surgery. Then Urologist #3 told me he wanted to repeat all the tests I had just had done over the last 2 months. I told them that I was getting ready to start nursing school and I needed to get them done as soon as possible. He said they couldn't even start to schedule it until after September. SO when they called to schedule I told his nurse that I didn't want to repeat any tests. That was a waste of my money and my time. So I never heard from them again. SO I decided to go back to Urologist #1 since he has been my urologist since my pregnancies (Stones really bad!) starting in 1988. I had to wait 3 months for that appointment. I went in November 2002. I sat in his office for 3 hours. He walked in the room, asked me why I was there, and then said, "Oh! That's a gynelogical problem!" I seriously wanted to scream. He said it was no big deal that I was holding so much urine and it was probably from the cystocele. I told him that when the problem started 15 months ago I didn't have a cystocele. He just sort of looked at me and said that I wasn't leaking so it was no big deal, and I should go see this other gyn, and no one else but this particular doctor. So I saw that gyn in December. We waited for 2 hours in his office before being called into his personal office. He asked me if we were there for a second opinion. I told him we were there for a doctor. He started right into that he would not be my doctor because he didn't want to get involved in any legal entanglements. He had just written out a check for $50,000 for malpractice insurance for one year. And he did not want to go sit in a courtroom for hours and days because that took time away from his family and he was not willing to do that. HE said he had paid the price once before and he was not willing to do it again. He said I know you are feeling feelings of hopelessness and rejection and I understand that. Anyway he went on to be even more of a jerk. He made me move from one room to the next with a paper sheet around me. Those don't even go all the way around. Luckily my husband was with me and walked behind me. I walked with my butt towards the wall. There were a few patients but in rooms themselves and most of the workers had gone to lunch. I still can't believe I actually did it though. But he was yelling at me to come on and hurry up because he had patients waiting. Both Urologist #2 & 3 and this doctor all confirmed the large amounts of urine retention. Sad thing though, only this jerk ran a urinalysis to find out if I had an infection. They called me at home 2 days after my visit to tell me I had a urinary tract infection. He told me before we left that it would have been better for him if he had never seen me. I apparently was taking too much of his precious time because he had told me he would review my stack of medical records and refer me to someone here in the medical center. I never got his second opinion, but I sure got a bill. I went to a new gyn last Friday, one that I found. He told me adhesion don't cause pain. I told him I would like to hit anyone who thought that, and anyone who thought that didn't know what they were talking about. I told him my gyn of 12 years knew adhesions hurt because he had them himself. He shut up about that real quick. The thing is, this new doctor says I don't have a cystocele or a rectocele after 4 other doctors have said I do. That I don't understand. Now I found out that my left ovary has grown back (TAH 2000). It has something on it or near it. They ran some blood tests. HE said it could be a Suedo cyst (Fluid trapped and when they get it to take it out, they can't find it), a hemorrhagic cyst, endometriosis, or cancer. I am not going to believe the worst at all though. He did tell me I had the vagina of a teenager and very full breasts. Well, I've never been told that before, but my hubby isn't complaining! LOL Okay, I probably shouldn't have shared that. The reason he told me that is because after my total hysterectomy, my gyn had put me on hormone replacements. The jerk gyn yelled at me for taking those hormones and said I could have had a stroke because that ovary had grown back and is producing hormones. Jerk said to quit the hormones and have blood work taken after at least 2 weeks. So this new gyn said that postmenopausal women's vaginas become smooth and dry when they are normally full of wrinkles and very moist, and their breasts begin to shrink. Anyway, that is why he said that. He gave me the names of 2 general surgeons here in Houston that are supposed to be masters with adhesions. But none of this helps my bladder problem. The jerk gyn from December said he believes it is an actual functioning problem with the bladder. Honestly I believe it is something to do with adhesions. That seems to be the root of most of my problems if not all. I did have to go to the ER a few weeks ago because I couldn't hardly pee at all and my pain was out of control. They put in a catheter and gave me a shot of demerol. They wanted to send me home with the catheter but it was causing my bladder to have more spasms than it was having without it. Weird thing is, after they took the catheter out I could pee fine for about a week. Now everything is back to what it was before....push, push, push. I just wonder if that catheter stretched things a little. I know it hurt like crazy when they put it in and took it out. I'm sorry I didn't mean to write a book! Anyway, maybe we can keep in touch and help each other with tips. Talk to you soon (I hope!)

Big bear hugs! Jenny

At Mon, 3 Feb 2003, Cheryl wrote: >>
>> Hello Jenny, I was surprised to see your post as I am having exactly the
>same problems. I have had the urethra stretched twice now. The last
>time was
>3 weeks ago and the urine flow is slowing down again already! Scar
>tissue blocking it is the problem. My urologist also told me that as
>women age and
>the hormones decrease, that will also cause problems. He did a flow
>test and
>said the flow was like an old man with a huge prostrate. Let me know if
>you find out any more that we can do to get relief, other than more
>stretching. When he does that it burns like crazy for at least two
>weeks after!!
>Please know I am praying for success for all that are planning on
>surgery soon.
>Painfree hugs and love to all.....Cheryl

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