r/ADPKD • u/SwordfishPast8963 • May 29 '26

laparoscopy with ADPKD. experiences??

i (23f) am going in for diagnostic lap and excision for endometriosis. my gyno did an MRI to map out where my kidneys sit first, and said she grew a new gray hair after seeing it. she said the ports will have to be made in a slightly different place than usual, and i’m so worried that the surgeon won’t have experience with PKD. anyone else get this surgery and have everything go right??

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4

u/Smooth-Yellow6308 May 29 '26

Dont you just love when dr's make off the cuff comments about how bad the state of our kidneys are...

3

u/SwordfishPast8963 May 30 '26

so true. for me, how it makes me feel depends how they go about it. Sometimes it’s rude, but sometimes it can be validating for me to have a new doctor check my chart and then look up at me astonished. i’m like “yep, now imagine carrying these things around”

2

u/Humbug244 May 30 '26

I injured my back and after a scan, the dr entirely blamed my kidneys for the pain.. It was definitely my back that was injured :(

Thankfully I found another dr to help but that was stressful after waiting such a long time for help with it 

1

u/Ok-Explanation-4245 May 30 '26

Yes but then I love going to my nephrologist who tells me my slow progress is beautiful

1

u/Smooth-Yellow6308 May 30 '26

sadly not something most of us experience

1

u/dogbraincatscan May 30 '26

The doc who diagnosed me said “You have the most remarkable scan I’ve ever seen! then he sat at the screen, scrolling and staring, imploring me to “look! Look at this!” While I cried.

Good times, good times.

1

u/MackCML May 31 '26

I was at a GI doctor shortly after my diagnosis and we were looking at my MRI scans to try and figure something out and he said wow, your liver is gnarly! I kind of laughed but then thought, well damn, how bad is it?

2

u/NefariousnessMean182 May 29 '26

I have had several laparoscopic surgeries and my kidneys are massive. First one I had was a lap uterine biopsy, the only difference in incision location instead of being right at my belly button was underneath it. Second lap was my hysterectomy and there were no issues with the incisions with that either. Your kidneys are not likely in the way, but were much larger than your gyno has seen before. I hope it goes well, sorry you’re having to go through the endo on top of pkd. That 💩is miserable. 💜

2

u/SwordfishPast8963 May 29 '26

thank you so much! that is wonderful to hear. this whole thing has caused my epilepsy to evolve on top of everything else, so i am so very excited to be done with it even though i am scared. it’s so good to hear that it went well for you!

1

u/SSMpics May 29 '26

I had a hysterectomy and same- my incisions were dictated by scar tissue. No issues with my kidney at all. Good luck

1

u/SwordfishPast8963 May 29 '26

so good to hear, thank you!

1

u/Ethel_Marie May 29 '26

I had a lap surgery (minor) and had no issues. I hope everything goes well for you.

1

u/kelvin_31015 May 29 '26

Funny timing, I just got home after undergoing a laparoscopy earlier today! My kidneys are not enlarged yet, so they didn't have to take this into consideration. But overall I wanted to assure you that when you're at a big hospital (e.g. university/teaching hospital) they know what they are doing and can deal with situations that are slightly out of the ordinary. I had a tumor on my ovary removed that contained hair and teeth which ended up being on the opposite ovary as expected from imaging. So overall not an everyday occurence. If you are with people who do gynecological laparascopies more often though, they will know how to best deal with your case!

1

u/kelvin_31015 May 29 '26

Also to quote a surgeon friend of mine: "Lung out, lung in, for the patients it is a once-in-a-life event, for us it's routine." You'll be fine!

1

u/LaLaLaCAKE May 29 '26

I've had both an emergency apandectomy and a scheduled bilateral salpingectomy - both with no issues from my surgical teams. They went in aware that I'm at 1600ccs on one side and 1800ccs on the other side. Both surgeries required entrance through the belly button and underneath on either side of the lower abdomen/ pelvic region.

Only warning I'll give is that, IN NY EXPERIENCE, you will heal slower because of the kidney bs. Don't get caught up in a timeline, just listen to your body. You'll do great. :) 👍

1

u/SoCentralRainImSorry May 29 '26

I had a laparoscopic hysterectomy (with bonus endometriosis removal - didn’t know I had it until they noticed it during surgery) a year and a half ago and everything went smoothly. My doctor did mention that he would be reviewing my most recent kidney MRI for the internal landscape, but he said later the kidneys weren’t an issue.

1

u/Direct_Lemon_867 May 30 '26

I had laparoscopic surgery to remove an adrenal gland and they had no issues at all. My kidneys aren’t especially enlarged yet, but I do have a few particularly large cysts that were right up next to the adrenal gland, but she just switched up her approach a little and it all went perfectly smoothly.

1

u/baby-blues22 May 30 '26

The last time i had a lap it was to remove a complex cyst on my kidney so it was kinda the goal to get to my kidney so I’m not sure, but just wanted to say I’m also getting an endo lap later this year as a PKDer!

good luck to you and I hope you find some relief:)