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Opinions needed please! (m)(long) Opinions needed please! (m)(long)

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Unread 01-09-2005, 12:24 PM
Opinions needed please! (m)(long)

Well, I have not been around for a bit but find myself back here for advice as you all have the experience needed. I am now 9 weeks post-op (Oct 27), surgery was a TAH, incisional hernia repair with mech inserted and adhesiolysis. Surgery was very long, 8:40 am to 3:00 pm. Was feeling pretty good for first few weeks. Went to emerg 2.5 weeks post-op with severe lower right abdomen pain - doubled over. Gyny that did part of the surgery BRUSHED me off, said I had pulled a muscle. I told him that he was wrong, it was far to deep and not muscle pain. He sent me home with no checking. I did not pursue relief of the pain as once again I was made to feel stupid by my doctor. This was my 11th laporotomy!!!! I KNOW when I am not well and I only see a DR when I really, really need to. Every time I am right and there is something wrong so I do not know why I let them make me feel like this.
Anyways, about 3 weeks ago, my right kidney area starts twinging and becomes a terrible steady pain. I see a Dr. at 8.5 weeks post-op. She says no kidney problem, just a pulled muscle!!!! I got very upset and demanded an ultra sound. Well. I have a 8cm cyst in the lower right abdomen, there is distension of the bowel, my right ureter is dilated and my kidney has been decribed as hydronephrosis which is when the kidney is not draining due to some sort of blockage. My u/s tech was kind enough to tell me all of this so I immediately booked in with my GP. After an emergency CT scan, I am being told that I have a right ovarian cyst.
I do not have ovaries! As a matter of fact, the right ovary was removed in June of 2000! I am told that the cyst has caused the kidney problem etc.
Please ladies, has anyone ever heard of this? I find it bizarre to have an ovarian cyst with no ovaries. I am told that I have to see a urologist and gyny. I refuse to go back to the original gyny but have another one who said he would take care of me. Do you think this will mean surgery? The cyst I am guessing has been there for at least 6 weeks and the pain from it has been constant - not as severe as when I went to emerg but it is there. The kidney pain has subsided as well but it is still there too. I am experiencing headaches and very bad acid as well.
I cannot imagine having to have a 12th surgery but right know I do not feel so confident.
ANY info at all is appreciated and needed.
Cheers, K
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Unread 01-09-2005, 01:32 PM
Opinions needed please! (m)(long)

Go to the other Gyny. It sounds like you may need additional surgery. I know I sure wouldn't go to the one who didn't beleive you!

Let us all know what happens.
Unread 01-09-2005, 02:21 PM
Ah huh! Did some reading...(m)

I am going to take a wild guess and say Ovarian Remnant Syndrome. Just read about it on line and it is exactly what would match my ailments. Unfortunately it would most likely mean another surgery but knowing what it probably is would give the gyno a better understanding of what to do - right?
I would still love to read your opinions!
Cheers, Kelly
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Unread 01-09-2005, 02:26 PM
Opinions needed please! (m)(long)

It sounds like you might have Ovarian Remnant Syndrome (ORS). Your symptoms sound just like mine. You really need to get this taken care of ASAP as you could loose a kidney. Maybe you could go to a urologist and get a stent put it. Do not wait on getting that kidney taken care of!
Here is some info on ORS:Ovarian remnant syndrome is pelvic pain due to leftover ovarian tissue after removal of the ovaries and fallopian tubes. It can cause cyclic pain and pressure on the vagina, rectum, bladder, and ureter. The ovarian remnants may be removable with laparoscopy. A qualified gynecologist familiar with the condition should be consulted.(http://www.medicinenet.com/script/ma...ticlekey=17785)


I can get you more info if you like.
Take care, and know that this is NOT at all uncommon, you are not alone.
Unread 01-09-2005, 02:43 PM
Thanks Carrie! (m)

Those were two of the sites that I found plus more. I love the fisrt one tho because if you read the last line it completely excuses the surgeon from any fault! As per usual. I am feeling a little better about probably knowing what is going on. I have an appointment with a urologist tomorrow and I am going to be clling my GP's office first thing in the am to fax my test results to my new gyno immed. I want this fixed yesterday!
Thanks for your input and fast response! VERY much appreciated.
Unread 01-09-2005, 03:46 PM
Opinions needed please! (m)(long)

My lawyer gave me that first site! Did not make me happy. I understand having too many surgeries, although I have not had as many as you, I have had 7 for endo alone (others for various other aliments as well).
Can yo let me know what happens tomorow?
You are in my prayers.
Unread 01-09-2005, 05:15 PM
Carrie, do you think..(m)

I will most definetly let youknow what happens!
I have been pndering all afternoon, i have had so many surgeries for strange ovarian tissue growing that I am now thinking I have had this going on for a long time. I am also thinking that the HRT I am taking is more than likely causing the regrowth seeing as I have no female parts at all left.
I can guarantee you that I will have the surgery within weeks, I talked to my GF who runs my new gyno's office and she promised to get me in immed and would bump whoever she had too that could wait a little longer. She has sympathy for me! As long as the people she bumps are not suffering cause that would not be so cool.
I'll get you info asap tho. I also have seen a lawyer regarding my old gyno several years ago for his screw ups with me but was given the old "standard of care" line of CR^&**P. My gyno told me he would do right by me this time - what does he do? Misses stuff and then when I go to him in severe pain, sends me home!
Ok enough venting!
I am very sorry you are going thru this too! It is painful huh? Is it affecting your kidney and ureter too?
Take care and we'll chat soon.
Unread 01-09-2005, 06:46 PM
Opinions needed please! (m)(long)

Hi again, yes it is affecting my ureter and kidney. These remnants have a tendancy from what I have read, to attach to the ureter. I also had to have a stent put in for six weeks. It all started with me getting cramps like I was going to have a period. Then I got the pain in my kidney (flank) area. It was VERY painful!! After two days of this DH took me to the ER. I was in hospital for 4 days, as I nearly lost my left kidney. Come to find out te HRT only made things worse. I am never doing that again!! The remnants are smaller now (I have two) the left was the size of a baseball and the right the size of a golf ball. Since they act like ovaries they cycle and like today for instance, they really hurt.
I just got a referral to a new doctor who specializes in cases like this. I hope to see him soon. I have an appt for an ultrasound on Tuesday(only my fourth since September not to mention CT sans and MRI's). I have been dealing with ORS since September!! My Gyn and my GYN/ONC did not want to admit what this was either.
I will be looking forward to haering what they are doing for you.
Take care,
Unread 01-09-2005, 07:18 PM
What???!!! They made you go this long?(M)

That is bizarre! You would think that they would get that stuff out of there to prevent permanent damage to the kidney!!!! I am in Canada, where are you? I know I should have read your bio first....
I cnnot imagine having to wait it out like you are! I feel so bad for you and so guilty for complaining!
I hope you hve a resolution soon!
Again, I will let you know asap what they gyno & urologist say.
Unread 01-09-2005, 07:25 PM
Opinions needed please! (m)(long)

I am in the US. Southern California. I see a couple of high falutin' Beverly Hills docs... I know Canada has some long waits. It is just my doctors did not want to accept what this is. So, last week I had a tizzy and really let loose on my GYN, so she FINALY gave me a referral. It is like my GYN/ONC is just trying to put off the inevitable! I don't get it!

If you have yahoo IM I am IzCoCo
I would love to chat further wil you

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