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Post by mwilmot on Aug 29, 2006 14:43:44 GMT -5
Hi all, this is my first time posting. I am recovering from my second laparoscopy in 2 months. I found out with this last one that the endometriosis has moved inside of my bladder (everything outside of my bladder is finally gone). I meet with the surgeon on Tuesday to talk about my current recovery and the next surgery. At the hospital my surgeon said that they would need to remove part of my bladder. They put me on Lupron (which I've declined in the past but since this is only temporary I agreed) to shrink the growth. Has anyone gone through this before? If so what can I expect for the surgery and a recovery?
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Post by lindsay815 on Aug 29, 2006 15:13:08 GMT -5
hi. omg... 2 laps in 2 months?? I am sorry you've had to go through that!! I definitely will never again complain about my 2 in 2 years!! I dont know much about endo actually inside the bladder. I dont think it is very common though. Oh, and how exactly did they determine that it was in your bladder with a lap?? I thought they could only see the outside of it.... I just wanted to post for support and to welcome you to the board!! I am pretty new, too, but am trying to post more and get to know everyone better!! Keep us updated on whats going on with you! Hopefully someone else here can offer a little more advice than me on that specific surgery for you!!
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Post by erzulie on Aug 29, 2006 17:54:52 GMT -5
Welcome mwilmot! Unfortunately I don't know what to tell you about the problems you are having. I'm very sorry that you got this in such a terrible place! Good luck with getting this taken care of.
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Post by ouchy on Aug 29, 2006 19:49:09 GMT -5
Hi, mwilmot. Welcome to the forum. Please take the time to post an intro in the "Introduce Yourselves" room so that others can read/find your background more easily and also you won't have to post it each time.
I have a couple questions. 1) what was done during the first lap 2) what was done during this last lap that endometriosis was seen inside your bladder? Was a cystoscopy (bladder scope) performed at the same time as your lap?
I really don't think that the doc. would be able to see through your bladder just by performing a regular lap--the bladder isn't THAT transparent that microscopic endo could be seen from the outside growing on the inside. I suspect that your doc. must have gone through your urethra and into your bladder to see any endometriosis inside your bladder. I had a urologist look inside of my bladder, because I suspected I had internal bladder endometriosis. I suppose that a cystoscopy could be performed by a gynecologist while you were still under the anesthesia, though. I don't see why it couldn't. However, I think that you should ask your doctor a lot of questions about what all was performed at the time of your lap. This will give you more clues as to how he knows there is internal bladder endometriosis, etc.
Welcome, again, to the forum
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Post by mwilmot on Aug 30, 2006 12:53:24 GMT -5
Here is the short version and I will enter a longer version in the 'Introduce Yourselves' section.
1. The first lap was done on June 28th and that was by my gynecologist (who is not specialized). He found out that my bladder, uterus, and intestines were stuck together so he could do nothing with that. He also found that my fallopian tubes were stuck to my uterus so he 'unstuck' them. He also found that my fallopian tubes were blocked but did not know how to fix them. I'm actually thankful that he tried not to do more than he could.
2. The second lap was on August 18th with an endometriosis specialist (Dr. Nezhat -www.nezhat.org) close to where I lived. I will get the op report, pictures, and video from the surgery on Tuesday. During the surgery he 'unstuck' my organs, removed the endometriosis, and opened my fallopian tubes. He did do a bladder cystoscopy at the same time he performed my lap and that is how he found it. He did not fix the bladder during the surgery because of three reasons a) he did not have written consent b) he wants to have a urologist present c) he wants to shrink it a little before surgery so less of my bladder that is removed.
Most of the endometriosis found and removed was located near or on my bladder. I am fortunate that my reproductive organs were spared by the endometriosis and it chose to attack my bladder instead.
After the surgery the surgeons assistants came in and said that I had to talk to the surgeon more for details so I'm just going on what they told me during recovery.
This is extremely rare. My surgeon who does many laps a week and has been in the field for a long time and they say he has only seen this about a dozen times.
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Post by erzulie on Aug 30, 2006 12:58:38 GMT -5
Wow, it's a good thing you were able to see a specialist so soon!
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Post by mwilmot on Aug 30, 2006 17:45:11 GMT -5
I am lucky this specialist knew enough to look for it. I did mention my bladder pains in my paperwork and in our meetings but was very glad he checked. I never even knew that it could move inside of a bladder!!! However, now I know what was causing me so much pain...I figured it was just the endo on the outside of the bladder.
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Post by ouchy on Aug 30, 2006 20:15:27 GMT -5
I never even knew that it could move inside of a bladder!!! It probably developed on the outside of the bladder first and then grew through the bladder wall to the inside. That is why lasers are only good at removing "surface" endometriosis. Sometimes the implants can be very deep and penetrate organ walls.
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Post by denna on Sept 3, 2006 23:11:50 GMT -5
hi mwilmot
welcome to the forum.
i've read your interesting intro. would like to ask you how do you know you have endo in your bladder? do you pee normal?
and is it possible to unblocked the fallopian tube? do you know how did your specialits do that? i've never heard that you can unblocked the tube other that removing adhession but it won't necesary work
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Post by mwilmot on Sept 5, 2006 16:51:24 GMT -5
Hi Denna - I knew I had endometriosis affecting my bladder because it was very painful to pee. Not actually peeing was painful but when I was done I would have excrutiating bladder contractions (that is the only way I can think to describe it) that would usually lead me to tears - The contractions would last from seconds to minutes. I also had to pee more frequently. It would only happen from the end of my period until I ovulated. Once I ovulated I was back to normal - The doctor has no theories on the link of my pain getting better after I ovulate. The pain started within this last year so I didn't have it too long but it gradually got worse.
During the last surgery they did a bladder cystoscopy and found it. (they also removed a ton of endometriosis on the outside of my bladder) I just got back from the doctor and have scheduled my next surgery (to remove part of my bladder) which will be October 19th. They said the spot where the endometriosis is in my bladder is right where my bladder and uterus were stuck together. I'm still very lucky he checked for this. He told me today that the growth is in a tricky spot too but that he will get it all when I have surgery in October. He said he will also do this surgery laparoscopically. The pictures from the cystoscopy were very interesting.
I had read up on the fallopian tubes and 'unblocking' prior to surgery and it seems like they just cut a hole where one should be but I'm not certain. Usually they unblock them with a laparotomy but again I had it done laparoscopically. However, with opening your fallopian tubes my risk of an eptopic pregnancy are high. I should have asked more questions about the fallopian tubes and the blocking but I was told they are all fine now and ready to go and now I'm trying to get through the bladder thing so I guess I should go back and ask some follow up questions. I can't remember where I found some good information but if you search the internet for 'blocked fallopian tubes' you'll find some good articles, pictures, etc... My first doctor (my gyn) said that when they do the die test it usually unblocks the tubes or sometimes they just unblock naturally.
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