Post # 1
So I have been having weird health problems for a few years and nobody could figure out what caused the low grade fevers, pain in my right side/down my right leg, back soreness, bloody stools etc. I went through all the gastro testing and my entire GI tract is fine. They thought it was my appendix once when I was very ill but it wasn’t. Now my doctors think it’s likely to be endometriosis (based on how I feel on/off birth control, heavy long periods, short cycles).
I originally thought birth control was causing my issues (especially the mirena IUD) so I went off of everything and got much worse. I was okay on taking Yaz continously but still had a lot of pain during sex. I am on LoEstrin continously for 5 months now. I do feel way better than before I was on birth control and I was feeling pretty alright for a few weeks but now the pain is back despite not having a period in months.
I am really against going on the Lupron shots to put me into menopause for 6 months because of huge issues I’ve had with side effects from birth control in the past. I am thinking about getting laparoscopic surgery to get a confirmed diagnosis and maybe get rid of scar tissue if possible.
Has anyone with endo had the surgery? How bad was the pain after and were there any complications? I know that the ablations can come back, so what were the longterm improvements?
Thanks so much!
Post # 3
I had this done last year. I had been experiencing very, very severe cramping and heavy bleeding for a few years prior. I went to my gyno seeking sterilization surgery, and when she was in there, she found a large amount of endometrium where there shouldn’t have been any, and removed it, along with the endometrium inside my uterus. Since my surgery, I don’t get my period anymore, but still have very light cramping for maybe an hour around the time when I would normally be ovulating.
I know my situation is probably different from yours (I’m guessing you don’t want a full ablation?), but I can most definitely tell you that my pain has stopped and I am not miserable for 10 days out of every month anymore. Sex is no longer painful either, which has increased my quality of life by a HUGE amount. I used to not even be able to walk or move around because the pain was so bad; the only medication that helped was Percocet, and I didn’t want to have to take that all the time.
My surgery was slightly more complicated than a regular laproscopic one to help with endo, but I was up and around in 2 days, and so far, it’s been WONDERFUL!
Post # 4
I had this 8 years ago, when it wasn’t really normal to have this done. It has started to come back, but it’s nothing like it used to be. A few years ago I went on Seasonale birth control so I was only having my period 4 times a year which obviously makes it easier to deal with. I was out of work for about 3 days and had some light bleeding for a couple days after that. All in all it was way worth it.
Post # 5
Thanks so much! I do find it hard to walk around when it is really bad (like now, which is the first time since I got settled on birth control again). I cannot exercise really at the moment which sucks! I plan on going back on birth control after the surgery. I would be fine if the surgery left me infertile because I do not want children. I find myself laying in a ball constantly when it is bad and not breathing deeply because I don’t want to use any of my ab muscles! I am thinking about scheduling the surgery once my semester ends (I’m a grad student and can’t get a few days off until late May or June).
Post # 6
I’ve had the surgery twice.
Once my SR in highschool and also my SR year in college. I’ve found the pain goes away for aroun 9-12 months and slowly, but surely comes back. Be prepared to spend a few days lounging around. Make sure to walk around and that will make you feel better.
This past time I had problems with my shoulder (gas settling) hurting really bad and nosebleeds. Also, I had a mild allergic reaction to the pain meds. Make sure you have someone available to drive you places because driving/riding in a car can be very painful and you aren’t supposed to drive until your doctor clears you.
I’d be happy to answer an specific questions you have. Feel free to PM me
Post # 7
I had the lap surgery in December…4 days after I graduated nursing school…me personally..I had a horrible experience with the surgery just because they had a hard time putting me under..I kept waking up and remember everything, so they had to double dose me which made my bladder stay “asleep” for a LONG time once I was out of surgery, so they had to send me home with a catheter (which i took out myself at home with a 10cc syringe because it SUCKED). The surgery itself though, healing wise, wasn’t bad at ALL. I actually went to the mall 48 hours later…yeah, bad mistake, because 15 minutes into being there I almost passed out…I didn’t realize how much your body actually does go through when you have surgery…but I’m also the type that hates to lay around…but after that happened I ended up forcing myself to relax at home…it only took a week for me, to fully be ok, but I think that was also because I pushed myself too much in the beginning, otherwise it would have been quicker.
That being said…2 weeks after having my surgery I would cramp all.the.time….just as bad, if not worse then what I had before the surgery…one morning it hit me so hard and SO fast that I screamed for my dad and saw him at the top of the stairs and that’s all I remember..I passed out..thankfully he caught me before I fell down the stairs…but thats how bad my cramps are…SO, my OB doc finally said, no excuses, you’re going on the lupron depot shot…and I’ve been on it since Jan 5th…so far, I’m still cramping…like clock work..around 2 or 3am every morning…bad..I have tramadol (muscle relaxer) that he prescribed me that I take that works WONDERS! Since then, I’ve talked to my doc…unfortunately, the shot is not to be used ANY MORE than for 2 treatments (2 treatments meaning 6 months each time, so 12 months altogether) because it causes bone loss…and unfortunately, he’s already talking about me having to go through a second treatment…now mind you…we found out that I have stage 3 endometriosis…