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Post by camille on Apr 25, 2007 9:28:39 GMT -5
Well ladies, I have a follow up visit today with my new Gyne. I really liked him last week This is my first time with a male doctor, which I felt the need to tell him as soon as he walked in to the room. His response to my saying, "I have never had a male doctor before" was, "I have never had a male patient before". Anyway, after listening to my symptoms and reading the report from my lap last fall, he is recommending another lap (and lupron, and IUD - I am still not going to do lupron but I will try the IUD). He specializes in the excision of endo. Last fall it was "burned" off. So, he should be able to remove it from my bladder, and he thinks it might be on my bowel and that my last surgeon either didn't see it or couldn't remove it. Anyway, I didn't want to have surgery again, and especially not this soon but I think I need to go along with my doctor at this point. He said that I should have had at least a few months of relief after my first lap. Since I didn't, he wants to go back in. I will be making that appointment today. Has anyone else had both kinds of laps? Did you experience a difference? I am afraid that it is going to hurt more and require more healing time. Is this true?
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Post by scarlett on Apr 25, 2007 16:51:19 GMT -5
Hi Camille,
I've just had the excision kind (last Dec) and I can say that I found the recovery fine in terms of pain. Although they couldn't remove all my endo, they removed quite a lot. My main pain, well discomfort really, was because of the catheter and fluid drain. They were both quite uncomfortable and it was tricky to stand up straight, etc. However, that was only while I was in the hospital, once they were out it was fine. I only took paracetemol for about 2 days when I was at home and that was it.
I still had to be careful about moving around for a few weeks, but in terms of pain it wasn't too bad.
Hope it goes really well for you. It's great your surgeon is an expert in excision though.
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Post by ouchy on Apr 25, 2007 17:36:44 GMT -5
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Post by camille on Apr 26, 2007 9:33:44 GMT -5
Well I will be making my appointment for surgery today. Thanks for the replies and the links, I have trouble searching, which is ironic, for a librarian. (and if this belongs in a different thread, please move it) My new Gyne looked at my pictures from my first lap and said I have stage IV endo. It is on my bowel, as well as my bladder and pouch of douglas. My last Gyne only mentioned that she couldn't remove it from my bladder. I feel like I am in good hands though...he says he can "get it all" but cannot guarantee anything...whatever that means Anyway, he told me that he will be using these robotic arms for my lap - that he actually controls from a computer??!! I saw a picture of it and its really weird! He says its fairly new but extremely effective compared with the traditional tools. The "robot" has "fingers" and can actually lift and move things around... Anyone else heard of this or experience surgery this way? This is from the Johns Hopkins website on laparscopy for endo: "Here's how robotic surgery works. The surgeon acts as an operator of the robot, whose three "arms" are connected to delicate laparoscopic instruments. Refined movements of the surgeon's fingers translate directly to the laparoscopic tools attached to the robot. Robotic surgery offers several benefits. It provides better visualization for the surgeon, and the robot has a much better range of motion than the human hand. Because it is minimally invasive surgery, patients lose less blood and recover much quicker than they do with traditional surgery."
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Post by ouchy on Apr 26, 2007 9:38:52 GMT -5
OOOh, OOOH! I think we have a person on here who posted about robots during her surgery! I'll have to find it later!
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Post by camille on Apr 26, 2007 10:04:46 GMT -5
I just did a search for "robot" and did find a posting with a link to an article but it appears to be gone (the article that is...)
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Post by ouchy on Apr 26, 2007 10:37:45 GMT -5
Oh. Meaning the website hosting the article removed it? If so, that bites!!! Sorry. It was really interesting. I don't think the girl who posted it even comes online anymore.
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Post by scarlett on Apr 26, 2007 16:24:37 GMT -5
Sounds like we've very similar endo Camille, as I also have stage 4 and in all those places. I'd be really interested to know how your surgery goes. I wish my dr had looked at photos from my 1st lap as then he might've known how bad it was and had a bowel surgeon there too. As it was he couldn't remove lots of it because he hadn't realised how bad it was and couldn't do it alone. Sigh.....actually more than sigh - I cried tons when I was told!! Good luck with your op.
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Post by camille on Apr 27, 2007 9:25:40 GMT -5
Scarlett -
Did you get any relief from this last surgery? Did you do follow up treatments? Why did you have a second lap and how long did you wait in between?
Your doc left it on your bowel and your bladder too? Since we seem to have similar endo, I wonder if we have similar pain and discomfort ...?
(thanks...)
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Post by scarlett on Apr 27, 2007 11:22:28 GMT -5
Hi Camille,
I've always have fairly painful periods but no pain inbetween. I only started having additional symptoms in around Feb 06, then I had about 6 months of severely painful periods (nausea, excruiating pain, bowel symptoms like desire to have a BM but it was very painful to go. Also it was painful to pee and it all felt swollen and painful around that area. Cold sweats, etc). This was all only around my period though still.
I had my first lap in Nov 06 and then the 2nd at the end of Dec o6. I had a 2nd lap because the 1st was only diagnostic and the dr didn't have the expertise to remove anything other than minor endo and it was all over my bowel, POD and bladder. one of my ovaries was stuck down also, but that was it on the tubes and ovaries. They were clear otherwise.
They removed some of the endo, that around my ovary and other patches, but nothing too close to the bowel or bladdder. I actually don't know how much they removed as a %. I was too upset after the op to ask.
I haven't had the severe pain since the lap, but in saying that, it had subsided anyway before the lap so it's hard to tell what stopped it. I didn't have any other follow up treatment because I wanted to ttc. I was given the option of having a colonoscopy to see if the endo had penetrated my bowel wall and to tell the dr how complex another surgery would be to remove more of the endo around the bowel. I decided to wait on that though because I wanted to ttc and then try ivf. Because my treatment was geared towards conserving/improving my fertility rather than helping pain, the drs were of the opinion that another surgery wouldn't give me a huge increase in fertility and would be risky in terms of having to have a bowel bag, etc. So I decided not to do anything further for the moment.
It seems like given the extent of my endo I've been fortunate in only having relatively few overt symptoms (it seems like my fertility is seriously compromised though).
In the last month or so I have experienced some more bowel symptoms though, so I am considering going back for the colonoscopy at least. I think I had mucus in my stool during my period last month. I've also had some pain around that area when having a bm.
Are your symptoms as bad as before your last lap? I have heard that excision is the preferrable way to go, so maybe that will help for longer this time if you have the lap this time.
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Post by camille on Apr 27, 2007 11:43:34 GMT -5
Wow, we are similar. I do not know my fertility status other than "accidents" not resulting in pregnancy...
I have had pain since I was fifteen. In my mid twenties the pain was a little less intense - less nausea, less work/school missed. In the last year and a half, the pain has been as bad as when I was a teenager. I had stopped going to the doctor/ ER for cramps b/c no one ever did anything but my ovaries were hurting constantly.
I had a lap in Nov 2006 also! I was diagnosed and then had some removed at the same time. I opted out of the traditioanl treatments and went for alternative ones instead. I have not had any relief. Well, one month I only had bad cramps for a day.
I have pain mostly around my period but since my first lap I have had new discomfort. My ovaries hurt, I have a burning sensation and general ache in what my doc and I think is the endo on my bladder area. I have had pain with BM my whole life. I don't have IBS symptoms - no emergencies - and not necessarily associated with what I am eating. But I have sharp rectal pain, sharp vaginal pain, mucus in my stool (didnt know that wasn't normal), never any blood, thank Gd. I have incredible fatigue - physical and mental.
My doctor, like I said earlier, is using a robot! He says he can get it all. He is going to insert an IUD during the surgery. He wants me to stop bleeding for a while. I was very upset by this idea but after talking with my Body Therapist, we decided that it is a good idea. I chose not to do Lupron again.
I will let you know how my surgery goes...I am being treated more for pain management right now with the idea of helping to "preserve" fertility as a long term goal, though I don't know how long I should wait...
Thanks for your response, it is so nice to know that someone else can relate so well...
Oh! I also had an odd ovary! It was moved into a "normal" position during my first lap and I have a lot of soreness still on my right side. I don't think it wanted to be moved...
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Post by AussieBird on Apr 29, 2007 0:48:51 GMT -5
I'm having my second surgery soon (as per ticker below). It will be to clear up bowel / POD endo (Stage 4/5). I was told my bladder is the only place I don't have endo. I don't feel any better from my 1st lap in mid March, but it makes sense because most of my endo is still there waiting for my second surgery. One ovary was "mobilised", the other is waiting for the bowel surgery.Me too, although I am now experiencing more and more mid-month symptoms. With my specialist, I feel like I am in good hands, even if they aren't robotic. I have had fatigue since the end of high school and I'm really hoping to get some relief from that. Really, really hoping!! Camille, did you make your appointment - when is your surgery?
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Post by camille on Apr 30, 2007 11:21:18 GMT -5
My nurse just called and confirmed my appointment for Friday May 18, which is good because my boyfriend only has to take off one day to take care of me- I have the weekend to go through the "helpless" phase. I was told this kind of surgery will take an hour to an hour and a half - My first surgery I was told would be no longer than thirty minutes - but the recovery time is the same. Last time, I had four days to prepare, this time I have three weeks. I am grateful for that. I am planning on getting a massage the week of my surgery and moving the dvd player into the second bedroom where I will convalesce I have been stretching every evening too - I can't do a lot of exercise because I get really achy but I so stiff for so long last time that I want to try stretching beforehand - and just spending some time with my body. I will have one more period (thats the plan at least) because Doc is going to insert merina after the surgery. So here goes........
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Post by ouchy on Apr 30, 2007 11:35:23 GMT -5
Awesome!!!!! Good luck, camille!!!!!
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Post by camille on Apr 30, 2007 16:07:10 GMT -5
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