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CT Scan-Thank you I am not crazy! CT Scan-Thank you I am not crazy!

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Unread 03-21-2006, 06:06 AM
CT Scan-Thank you I am not crazy!

It's been a awhile since I even thought about my hysterectomy but this week after months of what I thought was pain from kidney stones and IC(bladder) I got some interesting news. My urologist read me the report from my kidney CT scan, "Enlarged uterus, probable fibroids" we both laughed and then called my surgeon for an appointment. I did keep my cervix and my left ovary so now I wait until April 5th for an ultra sound with my ob/gyn who did my surgery to see what can be done. I thought I was feeling bowel and bladder pressure like I had pre-op because fibroids were growing. Well at least I know the pains are not in my head, the swelly belly is real. My family doctor was starting to talk about emotional counseling. Anybody else have a similar problem? I am assuming for now that fibroids can grow from the top edge of cervix where the uterine tissue was. I am still laughing this morning, more relieved than anything that I am not CRAZY! Yeta
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Unread 03-21-2006, 04:21 PM
CT Scan-Thank you I am not crazy!

I'm glad you're finding some answers. I can understand you feeling relief that something was found to explain your pain, I've been on this Road for quite some time and I would be dancing in the streets if they actually found something that could be fixed. Good luck with your upcoming ultrasound. Do keep us posted on what your doctor finds and what the solution is.
Unread 03-22-2006, 08:22 AM
CT Scan-Thank you I am not crazy!

I too had everything removed buy my cervix. About 2 months ago I started bleeding.....they thought that I may have had some "uterine cells" left behind at the time of surgery. I was told that there is no clear cut difference between the uterus and cervix, so it is possible that uterine cells be left behind....in your case it makes sense thus you have developed fibroids....in my case, it turned out to be Ovarian Remnant Syndrome, ovarian cells not uterine cells left behind.

Let us know how it goes!!!!
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Unread 04-05-2006, 06:32 PM
CT Scan-Thank you I am not crazy!

Well dx appt was this morning and she was quick to decide it was not her problem, did a 2 second ultra sound, announced my cervix looked fine and there would be nothing left to cause a problem then called the radiologist and tried to tell him to remove the "enlarged uterus" finding from the report. She wants to send me back to the uro and then to a gastro for IC and IBS. The radiologist suggested an in depth ultra sound, that is the plan for now. Not sure what to think about my dx reaction to this whole thing. She was certain there must be a mistake, the wrong films were read, something, anything. Just not her problem. Do adhesions show on ultra sound, she was pretty sure there was no chance any of my pain was from adhesions since my pain didn't start until 9 months after my surgery and I had a LSH. Oh well, I guess I didn't get that easy answer I was hoping for.
Unread 04-05-2006, 07:14 PM

Just my two cents, but I just had adhesions removal surgery 12 days ago THREE years (almost) from TAH/BSO, so yes, although the have been there a long time, and always given me problems, suddenly the problems had gotten "severe" and I couldn't take it anymore. So, my two cents worth is (I have also been to the uro & GI) try another GYN. Someone who specializes in pelvic pain. I had been back to my regular GYN, (the one who did the hyst) four times and got nowhere. Some of them don't know or care when you don't heal "textbook". I know mine actually got ticked off at me, like I was insulting him. HELLO, I HURT!!!!!! This is not a fun merry-go-round to be on. I have seen a total of 14 doctors over the past 4 years, looking for answers, feeling like a fool, giving up for months at a time, then trying again. It is hard mentally and physically and people don't understand. But adhesions do n ot show up on CT or MRI's. Like I told my MD, just because YOU can't see it doesn't mean I DON'T feel it!! Good Luck to you, this is not fun.
Unread 04-06-2006, 10:51 AM
CT Scan-Thank you I am not crazy!

There's a member here who had fibroids removed TWICE after her hyst (BobbySueZQ). If you search her posts using the advanced search with the term "fibroids" you'll see her accounts of her follow-up surgeries.

It is most definitely possible to continue to have fibroids, particularly if you kept your cervix, as (((pj))) suggests. The boundaries aren't all that clear. I would be most disturbed by a doctor who refuses to accept objective findings of imaging, insisting that the doctors read the "wrong study." As an imaging professional myself, I can tell you that the odds of your developing a fibroid are much greater than the odds of mis-reporting...and your doctor's insistence that they change their report is quite disturbing, to say the least!

My concern would be that it is possible to develop malignancies, too, even after surgery. In your shoes, I would look for a GYN-oncologist. They have three more years of surgical training, and although the odds are that this is NOT malignant, they are still better qualified to evaluate post-surgical findings like this and deal with them. Even if this mass/fibroid/whatever is a tangle of adhesions, that can get pretty complicated to try to remove, and may not be a straightforward surgery. So a second or even third opinion with the surgical specialist would seem to be in order!

As far as your current doctor...and your PCP who recommended "emotional counseling," well, it's time for a change, I think! Sounds like your urologist is a keeper, though; what about asking him for a recommendation to the GYN-oncologist? They know the people in the area and can refer you as well, your GYN doesn't have to do it.

Keep us posted! I just wanted you to know that it is NOT unheard of to develop fibroids "after the fact." Rare, certainly...but not unknown.

Unread 04-06-2006, 07:06 PM
CT Scan-Thank you I am not crazy!

Well the phone has been ringing around here, the dr called back to tell me that she felt I had a "prominent cervix" I'll have to search on that and see what she means and maybe the radiologist mistook the cervix for an "enlarged uterus" she got me scheduled for an ultra sound tomorrow. The new radiologist doing the ultra sound called and asked me to bring my films and CT report for comparison. Still not sure what the heck is going on but hoping for an answer tomorrow at the ultra sound. Drinking the extra water will not be fun with the bladder pressure I already have. I am steeling my nerve to face the ultra sound tomorrow, I want to see everything and get an explanation on the spot, anything abnormal I want explained. I had my right ovary removed 15 years ago and started having terrible pains several years ago, 2 ultra sounds came back "normal" until finally a doctor read me the report that showed normal right ovary? slightly enlarged evidence of cysts. I had told both ultra sound techs that I did not have a right ovary, one even noted patient stated right oophrectomy. Had a lap and found that my fallopian tube had a cyst and it was 10 times the size it should be. Sometimes I just want to scream......did you think I imagined the previous surgery? Okay done venting...thanks for listening.
Unread 04-06-2006, 09:33 PM
CT Scan-Thank you I am not crazy!


Good luck with your ultrasound tomorrow. Hopefully things will be a lot clearer afterwards! I can only imagine how frustrated you must be feeling right now.

Unread 04-07-2006, 09:16 AM
CT Scan-Thank you I am not crazy!

Yetagain--you have really been through the wringer! I hope you finally get some answers.

I've too have been to a lot of doctors trying to find answers to my post hyst problems, and it is very frustrating. I am very disturbed to hear another person has been told to get emotional counseling for what is obviously a physical problem. The urologist who messed up my surgery told me to get therapy. Then when I consulted a urogyne, he wanted me to go back to my original surgeon. NO WAY! (In his notes he documented in great detail what had gone wrong with my surgery)! Another urogyne told me my prolaspe issues were in my head. Finally my family doctor verified that there are obvious prolaspe issues. I am going to the Mayo clinic (I live in Minnesota) and hope to get some answers.

I'm impressed at how assertive you have been in getting to the bottom of this. When I'm in a doctor's exam room, I have a hard time speaking up, especially when they play head games on me or try to pass the buck. Good for you in being able to keep a cool enough head to ask good questions!
Unread 04-07-2006, 06:50 PM
CT Scan-Thank you I am not crazy!

Cheryltwin...I hope you get some answers too......

I went to my ultrasound today and got part of an answer, the tech told me I have a large cyst on my left ovary, large enough to be mistaken for a uterus? Report won't get to the dr until Monday so I will have to wait the weekend for more info. At least I feel like I am making progress, my right ovary developed a large benign mass 15 years ago and I had it removed already. I am already wondering what can be done, don't want to give this last one up. My mom had breast cancer in her 50's so I don't want to have to go on HRT. I know I was offered BCP in the past to try and reduce the past ovary problems but my BP is sky high so I doubt I am a candidate anymore. Oh well a few more days to wait....

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