Bilateral Cystectomy - any advice?
Posted , 3 users are following.
25 year old here. In less than two weeks, I am having 3 large endometriomas removed laparoscopically. (Right ovary has one the size of a bell pepper, left ovary has two that equal to a little more than a lemon) I am very confident and comfortable with my surgeon and lucky to live close enough to a big hospital with the fancy advanced robots that basically do the surgery. However, I am still anxious. Just wondering if anyone else has been through this and what I can expect afterwards as far as recovery goes. The doctor says I'll be running marathons in two weeks (as if!) and that I can go back to work around then as well. Any tips as to what I can or can't do after the surgery or just words of encouragement would go a long way. My mother had endometriomas removed as well but that was in the 90's so her perspective is a bit off.
Thanks for any tips or advice!
0 likes, 8 replies
aitarg35939 lizanne4
Posted
My surgeries were quite a while ago, also, further back than your mom's when it comes to ovaries...or surgical robots, lol. Still:
I've had 9 major surgeries, 4 of which were due to endo. I still have anxiety before surgeries. This is a basic human response so try to accept the anxiety rather than let it ratchet up more anxiety. Sometimes this is beyond our control, in which case you may want to talk to your surgeon about it. If this is the first surgery you've ever had, you might ask for the kind of friendly walk-thru that is given to kids pre-surg.
In the surgery they pump gas inside of you to help them see & to make it easier to separate organs & maneuver. i think that's the same regardless of robots vs. human hands. This gas causes a lot of post-surg discomfort. Call the surgeon's ofc now & ask what s/he recomnends to deal with this. Other women will speak up about this & have suggestions -- it's been 15 years since my last laparoscopic surgery.
Yes, there will be some pain. Aside from the incision pain, some very large things will be taken out of your body, which will need time to
adjust. Yes, you should be moving quite well after 2 weeks but residual discomfort may last longer than that.
Obey what the surgeon says, especially regarding sexual activity of any kind. If he says avoid it for a month, that means avoid everything from masturbation to full-on sex, anal or vaginal. No matter how good you feel, follow the doc's rules on this & on lifting.
Surgery is scary and it's okay to feel as you do. There are no guarantees on anything in life, but most of us here have had 1 or more laparoscopies plus hysterectomies and bowel resections. You will come through this just as we have ... minus some very sucky growths.
Sending you peace & healing.
lizanne4 aitarg35939
Posted
Thank you so much for your reply and kind words. As someone who already has anxiety on a normal day I guess this has just escalated it, haha. Thank you especially for the part on sexual activity, as odd as that sounds. The post-op form they gave me said no lifting anything heavier than 2 gallons of milk for 4 weeks and no sex for 7 weeks. Thank you for clarifying that means ALL sexy stuff, saved me an awkward question the day of surgery.
Surgery is Dec. 12th, I appreciate the good vibes.
aitarg35939 lizanne4
Posted
Just FYI, 2 gallons of milk is 18-lbs or 8.2 kilos. i'm surprised that you'll be allowed to lift that much weight that soon, but i'm no doc and it's been too long since i had that kind of surgery.
Try to stay away from google as it will just make things worse. Celestial Seasonings Tension Tamer tea helps me when i'm anxious, tho i usually only experience it pre-surgery or when i'm fundraising.
Yes, i'm explicit about the sex because we've had women on here who've set their recovery back for weeks, saying "but that's not REALLY SEX!" Teehee, yeah, it is in terms of what happens both on the abdominal surface (causing tension on incisions) and what happens all around our repro organs inside when we're stimulated.
Somebody's almost always up here and we do understand that it's anxiety both about the surgery and about the future. Whether they speak up or not, there are women on at least 2 continents who are pulling for you.
lizanne4 aitarg35939
Posted
Thank you so much for all the info and kind words! surgery is exactly a week from now, maybe I'll give ya'll updates while i'm home and bored, haha
thanks again! ❤️
MadisonE lizanne4
Posted
My surgery was about 18 months ago now and I remember googling everything and I made myself super nervous about the entire thing. the one thing I will say is for me the gas pain was the worst but I bought the chewable gas x and it worked magically. I also bought an extra pillow because I'm a tummy sleeper and that helped me be more comfortable. I slept in a recliner for the first few nights home. the heating pad was also something I kept with me in bed and just on the couch. the best thing to do post surgery is to be moving. not working out or lifting anything but just walking around getting up off your butt. this for me was the hardest as i was 20 when I have my laparoscopic cystectomy. my endometrioma was only on the left ovary and it was about 10cm a little bigger than a softball. It took me about 3 weeks to be back to work full time and another month to not feel bad pain in my incision sites. i had both my ma and my spouse for the first 3 days before I felt comfortable on my own. dont over do it. the most important thing is to listen to your body. your doctor knows best when it comes to your recovery. ask questions! they will tell you everything you need to know about your recovery time and what's normal. I made a list and dressed in my surgery gown I asked all of them!!!
you got this though. I will keep you in my prayers but you'll be just fine!
lizanne4 MadisonE
Posted
I will for sure have to remember the gas x tip as my doc did mention the whole gas discomfort thing, so thank you for the tip. I'll also keep my heating pad and hot water bottle handy. My endometrioma on the right is about the size of the one you had at a whopping 12 cm (Idk why my normal OBGYN told it to me in fruit size lol) The left ones are like 8cm or so and they're like conjoined twins is how they explained it to me. I'll be sure to make a list of any remaining questions to ask the day of, that's a good idea!
I guess I'm mostly just here for support, like I said, my mom had it done but I don't live with her and she's like an hour away. My boyfriend, god love him, isn't super nurturing and hears "two weeks and back at work" and assumes I'll feel fine within a few days. And hey, maybe I will, but maybe I won't, ya know? I'm having my insides dug around in and I wish he understood that.
Thank you for your thoughts and prayers and the advice, it was def useful!!
MadisonE lizanne4
Posted
I think it's just a thing to measure in fruit. 🤣 because that's all I've ever heard them referred to when it comes to size. every recovery is different. being honest though the pain of the surgery had NOTHING on the day to day pain living with an endometrioma that size. it's more of a soreness but for me the pain everyday was debilitating and excruciating so post surgery was a cake walk. just take it day by day and dont overdo it. ask for help when you need it!! dont let anyone baby you though as that prolongs the healing process. you got this though.
lizanne4 MadisonE
Posted
Good to know that the after pain is nothing compared to the before pain lol. i'm at the point where i can barely survive the work week without missing a day or going home early to lay down with my heating pad. thank you again for the advice, i'm definitely going to take it.