I can tell you the recovery was much easier with the complete hysterectomy with excising (avoiding laser burning) versus than it was with the emergency laporotomy the previous year, where I believe they cut and laser burned & left my organs in. I didn't know I had severe endometriosis and asked them to save my reproductive organs if possible with that earlier surgery. I was on an emotional roller coaster after that surgery, since they messed with the ovary with the torqued hemorrhagic cyst.
My bladder I believe was one of the hardest things to deal with post hysterectomy, because she had to cut about a 2 cm chunk out of the wall of bladder dome, where the sticky endometriosis was causing it to be folded and stuck to my uterus.
I have been through 2 already in less than 10 months. Depending on how my next u/s goes on the 6th I could need another to remove some more cysts. We'll see how that goes.
Aww thank you and you're welcome!!! I've been a member of this forum for a few years, and I posted on and off, but with my journey and my age - I feel I can offer tons of advice and experience with this..
I kept both ovaries and I hope my suregery 3wks ago was my last, but I do know that there is a chance I'll have to have both of them removed somewhere down the road. But for now, especially with my age, I'll keep them ;P
How many surgeries have you gone through?
I think I have pretty much made the decision already, I am going to do it. It is kind of nice though to have this extra time to really think about it! =) Like you said, I think I really owe it to myself and my family to get this done. I mean with every surgery I go through my husband seems to just worry more and more. It would be nice to have one final (hopefully) surgery and get it taken care of. I know that in a few years I might have to go back to have that 2nd ovary removed but at least it would not be every few months like it has been. I mean heck, my scars from the last lap are finally healing and now I have all this going on?!? The nice thing is that since I will most likely be getting the hysterectomy, I should be able to wait on any cyst/endo removal until then! I just have to talk to my doctor about ways to deal with the pain until that time comes. Thanks so much for all the help hun, you have been a HUGE help with most if not all of my posts!!!
I've been on Ortho Tri Cyclin too - but then again no BCP really worked for me. I don't deal well with hormones anyways. I seem to get aweful migraines.
I guess the way I think about the surgery (and why I had mine done) was that after all these years of putting up with pain, endo, cysts ect. I owed it to myself and my family to try to be as pain free as possible. While there is no cure for endo, excision of it has the best long term success rate...I know you have a lot to think about already, but if it were me that had the chance to be "normal", I would take it :/ At least you have a bit to think it all over and weigh out your decisions instead of having to make it immediately. Good Luck and let me know if you have any questions :-)
Thanks for the messages and all of the great suggestions. As of now I will not be doing a hysterectomy until at least October. If I did it any time soon I would be at risk of losing my job because I have not been here for a year yet. So I have plenty of time to weigh out the good and bad with it all. I know that there is no cure for Endo and although that is part of the reason I would be getting the hysterectomy, multiple cysts, bleeding and severe pain are bigger factors. I have a lot to think about over the next few months.
I had irregular bleeding issues too. Please see private message for some of the info I was looking at when contemplating hysterectomy.
dnikki - I'm not sure of the dosage my pill is, it's the generic form of Ortho Tricycline. If I end up getting the hysterectomy then she will also remove any and all Endo that she can find. I am still trying to decide which route to go right now since I would have to take 4-6 weeks off work and we may not be able to afford that.
Surgi - I do have Endo and the cysts that I have are causing me serious pain. That is the whole reason I went in to have them checked out. I also have some irregular bleeding issues and a bunch of other junk going on in there! My doctor is amazing and would have never suggested the hysterectomy if there were anything else we could do that we haven't done yet. I am still undecided as to what to do and have 5+ weeks to figure it out. Thank you for the concern and advice!!!
Also, has the dr. done any FSH testing even though you are on BCPs, given your cysts?
I recommend you research leaving a lone ovary in. I had a complete hysterectomy at barely 34 years of age for severe endometriosis. I read that usually, the remaining ovary will have to be removed within 5 years, if I remember correctly, so an extra surgery could be in the future that way.
Also, if you don't already know you have endometriosis (seeing as how you are posting on this forum, guessing you might?) and it turned out you have endometriosis (which they almost always don't know until they are in surgery), that remaining ovary producing estrogen will cause stimulation of the endometrial implants they miss (they can't get them all because some are microscopic and also, they might just not see all).
And you are vulnerable still to ovarian cancer when you leave an ovary in. Weigh that against hot flashes, sped up bone loss, etc. when making that decision. I was very blessed not to get a ton of hot flashes after my hysterectomy. I did get osteopenia and have small bones.
Are you in a tremendous amount of pain? If you don't have to have a hysterectomy, please, please, do not do it!
The only reason I did was severe pain issues- I had an endometrioma (which can destroy an ovary) inside my left ovary putting pressure on it, and the dome of my bladder was folded and stuck to my uterus with endometriosis, causing major bladder issues.
If you are just having non-painful cysts or hemorrhagic cysts and they aren't torquing (had one do that the previous year, when I had emergency surgery for that and also, had a 7 cm benign tumor pressing in on my bladder... they also found severe endometriosis) .... anyway, if they aren't torquing on you, hold off as long as possible is what I recommend. If your doctor recommends it and doesn't give you strong reasons as to why do it now, please get a second opinion.
I also learned post laser burning of endometriosis I didn't know I have, that excision is better, because the body views burned material as foreign and more scarring and potential adhesions can develop with burning versus excision.
So glad to hear the lump is gone :-) Did she say how big the cysts were? What dosage of BCP's are you on?
I'm 25 and just had a supracervical hyster, excision of endo, lysis of adhesions, enterolysis and an appendectomy (I know lol...) but left my ovaries - I'm 3wks 1day post-op now. I just have 3 little scars from it.
If you opt for the hyster are they going to take care of the endo that's in there? See if she can excise them since any remnants left over can still produce the estrogen themelves. Good Luck!