Complete Hysterectomy Due to Endometriosis (Page 1)

I am 3 weeks into recovering from a complete hyst. Due to endometriosis. I had a completely frozen pelvis: uterus, tubes ovaries, appendix & colon were all stuck together. The pain was unbelieveable. I am 30 years old and have no children. I had no choice but to have the surgery. Nothing was able to be saved. The surgery went a lot smoother than I thought it would. Recovery, however, has not been that great. I;m pretty much bored and tired of being in pain. My abdominal muscles are sore and the incision is killing me. I had to have a vertical incision due to the extent of my endo. It took over 20 stables to close me up. I can't bend over, lay down flat, or lift anything. Sex is the absolute last thing on my mind. I have no clothes that fit comfortably, not that I am dressing to go anywhere, I haven't been given the okay to drive yet. My friends and family have been great, visiting me and taking me out for as much as I can stand. I haven't started any hrt yet, my Dr. Wants to wait for 6 months to make sure any endo doesn't grow back (estrogen makes endo grow) my advise to anyway about to go through this surgery, prepare yourself mentally! You will be limited as to what you can do. And remember, it won't last forever. Everyday I feel a little better. I hear 4 weeks is the major marker, after that it is smoother sailing!!!

Hi im sorry to hear that you have been having such a bad time of it,the zoladex implants have helped alot with my endo pain all though they are only a short term answer,i did have alot of bleeding and discharge but after my second implant it has stopped completely which is good for me because I was constantly using pads which made me sore.Well I go for my pre-op assessment on wednesday and I will mention the patches to my Dr.I was under the impression that once I had a complete hysterectomy all my troubles would be over and that I would not get endo again as there was nothing there. Are you dissapointed about the no children thing or was that a concious decision? I do have 2 boys but its part of being a woman and it feels odd that I cant have any more kids even if I dont have the op as im in such a mess I still cant have them. Im glad I found this site I have spoken to some one else who is due to have a hysterectomy 3 days before me its good to talk about it. Im also suposed to start my patches a week after my op they do things so differently in different places, where are you from? Im in lincolnshire in england. Was your tummy very swollen after your op? They are going through my c-section scar, I was going to ask to see it after but ive seen some pictures on the internet and they made me feel ill,so I ve changed my mind.Please keep in touch and let me know how you get on. Thanks for getting in touch lorraine

I am glad to hear that you are getting some relief from the patches. It is interesting to hear how differently they treat the same disease in different places. I am from new jersey, usa. I didn't use any medication before or after my surgery. I won't start hormones for awhile. It was a very difficult decision for me and my husband. We always wanted to have children. But as my husband so wonderfully put it, my health was more important. We believe that there is a different path meant for us to follow. If we are truly meant to be parents, then there is a baby out there for us somewhere. When the time is right, we will find him/her! For me, the pain from the endo took over to much of my life. I couldn't live with it. What it all came down to is that my quality of life was more important to me than my organs! As for my stomach after the surgery, it was swollen and very sore but everyday it feels better and better! Good luck to you. Let me know how it goes at the Dr. -- sam

Hi, ladies. I have been reading about your endo, and the choice... Or decision to have a hysterectomy.
I also have endometriosis, and I have been thinking about an hysterectomy. I was wondering if I could get some advice from the both of you.
I was diagnosed only two months ago with stage one. But like everyone else that is suffering with this disease I still have a great deal of pain, even after the lap. My options like everyone else is either the lupron injections, cbcp, or hysterectomy.
I know that someone with stage one wouldn't generally consider something as drastic as a hysterectomy, but I tryed the birth control, and they made me very depressed, and have horrible migraines. Not to mention that I have to have a considerably strong dose to keep from having breakthrough bleeding which in turn causes me to have a constant bladder infection.
The lupron injections scare me because of all the side effects, and from what research I have done there isn't a great chance of it actually helping for any length of time.
The other reason that I would consider this is because, I have four children, and have had my tubes tied. I would only consider a partial (or whatever it is when you keep the ovaries) if only to avoid the extreamly painful periods that keep me bed ridden for three to eight days a month.
I don't intend to make this decision lightly, and would be greatful or any advice/opinions/support.
Thanks,

wendy

Etredwr8: I also agonized over a hysterectomy and after over 15 years of battling endometriosis, and long discussions with my gynecologist, I have opted for complete removal. My disease when first diagnosed, was classified as moderate. It caused total infertility after my first child (who is now almost 19). I underwent hormone therapy (synarel) for 6 months which did work for quite a few years until the inevitable regrowth came back. Due to my young age at the time and desperately still hoping to become pregnant, my doctor advised against hysterectomy. We tried every procedure and method to conceive again but to no avail. While I no longer desire to have any more children, I did agonize over the finality of losing my reproductive organs (i would feel less of a woman, etc.) but through lots of soul-searching, and conversations with my very supportive husband, I know that the temporary discomfort from surgery will far outweigh the unbearable pain I have endured these years and more so for the past 10 months, being briefly alleviated by a recent d&c. You know your body best, and you are the only one who can make the right decision for you. I just know for myself, that I want to get back those 2 or three days every month that I lie in a fetal position for hours in pain until my motrin kicks in and I can semi-function. I finally ended up asking myself, "why would I want to continue to keep something that number one, knowing that I no longer want children at this stage in my life (41)(and couldn't conceive anyway), and two, having something in my body that is of no use to me other than causing me incomprehensible pain???" I have made my peace with my body, and embrace the opportunity to enjoy life hopefully, and finally, pain-free. My best to you.

I am being booked now for a laparoscopy and feeling like I wil just do a hysterectomy based on experience of friends. I feel like I wil have no more kids and why do I wnat to keep having this pain monthly daily...Bring it on. I find most peoples expeirnces are pretty good.. It also depends on your outlook too. I am just strugglinh with the surgery aspect of it now... And who is gonna take care of my critters and place ? Etc janice I also tried bith control and they did not make me feel good at all !!! Lupron I had a friend go on and I wil never touch that stuff.. So waht's left ? This or hysterectomy and relief?

Longears: I am 9 weeks post-op from my total hysterectomy and I can tell you that I feel so much better after the hyst. Than having to deal with the excrutiating pain from the endo. In fact, my Dr. Told me that he does not know how I endured it for all these years, that's how bad it was; it also had started to attach and fuse together other internal organs. The only thing I would do over again would be to have the hyst years ago, but for awhile was hoping to conceive again but found out that wasn't possible so why keep something in your body that is causing you so much pain. You will be laid up for about 4-6 weeks, depending on what type of surgery you have. Hospital stay will be about 3-4 days, if you have family/neighbors, maybe they could help out with your critters/place. I felt pretty good after about 2 weeks, you just have to be careful about heavy lifting and stairs (if you have abdominal hyst.) I can only speak from personal experience and mine was definitely positive. Any questions, please feel free to ask, but I really believe you will feel much better for it.

You do know that you can still get endometriosis after you have a hysterectomy.

I had a complete abdominal hysterectomy but my situation was a little different as I had cancer and let me tell you that I never have any regrets, yes, their was pain and some stiffness @ 1st for a couple of weeks but do remember that you do go thru menopause, heck, I did not have any problems there either, please do not get me wrong, I am not trying to scare you. I have had a lot of surgeries and my hysterectomy was the best by far.
I do realize this post wa started back in june, sure hope all is doing well!
Happy new year
sandy

All of my organs are stuck together also, I was wondering if any of you experience lower back pain so bad its better to stand than to lie down. It seems when I go to bed at night I am back up after 3-4 hours of sleep, because my back and hips hurt so bad I can not sleep ,i have to be on my feet. Once I am on my feet for a while the pain goes away. But the problem is no sleep. I take muscle relaxers and rub lower back with biofreeze just to get a few hours sleep. Is anyone else as miserable as I am. I have been going through this a year and a half.I was suppose to have a complete hysterectomy 16 mos ago. I am a chicken when it come to surgery. Please reply.


Sincerely ,cindy

:oops:

Hi ladies I have been reading your messages regarding hysterectomy
and I am very concerned about it. I have had edometriosis for approximately 10 years and the pain gets worse and worse as months pass by they suggested a hysterectomy is the only thing I can have now because I already went through 6 months of lupron about 5 years ago and the pains went away for maybe 1-2 years but then they came back.
I am afraid the even if I have the surgery the pains are still not going to go away. And howabout when you have sex do you still feel the same or is there no more pleasure. :( :cry: :( :oops:

I am like some of you out there who after having had a total hysterectomy 7 weeks ago am back to having terrible back pain yet again! I was put on hormones the week after my surgery (which was done because of endometriosis) I had to start the hormones right away as I was having such terrible migraines from not having the hormones in my system. The doctor had hoped that I could go for a short while without them to make sure all the endo was killed.

I had an appointment last week with my family doctor he said I had a kidney infection is treating me for that, it's been 7 days on antibiotics and no relief so far. I phoned him this morning and have another appointment this afternoon to see where we go from here *sigh*....I thought this surgery was supposed to take care of it all!

I know this is a little late for this post, but I have been reading all these posts and have been reading a lot of the same thing, the surgery was "suppose" to help, i'm with all of you when I say, as for possibly helping only part of the problem i've had a lot more add on since the hyst..I only had a partial, but my whole way of living has changed..I think the only thing "good that has come from this is no more periods..Doesn't say a whole lot..I'm only 29, life is hard enough already w/o the other complications.. I feel for everyone on here, truely sorry...Hope things look up, good luck..;)
terri..

Hey ladies- i have had stage 4 endo for about 4 years - in feb 07 after my 4th laperodomy I had lost my battle with endometriosis with a total hysterectomy. Now 6 months later I am starting to show signs of lower back pain coming back with full steam. I am not sure what to think as of this point. wondering if anyone has had this situation. i am scheduled to have tests this week to check it out. if anyone has feedback that would be great - thanks stephanie

I see that some ladies actually take hormones after a hysterectomy due to endometriosis! i've been told that I don't need to take them. I had endo all over my insides...if they left behind any endo at all...the estrogen can make it grow again. I hadn't noticed a big problem with my attitude until recently and I was debating on taking hormones...after reading and remember how much pain I was in I don't think I will.

Also, my hyst was the best decision I ever made, BUT it did not get rid of the endometriosis. I have had surgeries since removing endometrial mases, adhesions, and endometriosis...it just moved...but it's not nearly as bad as it use to be.

Each woman I know with Endo...is also sick in other ways. GI problems, Pain all the time, unexplained odd symtoms or illness...anyone else notice a pattern of endo patients?

I had a TOTAL hysterectomy for endometriosis 20 years ago. About a month ago I started having pain in lower abdomen and right side similar to what I had 20 years ago. I had urine checked for bladder infection and also went to gastroenterologist to check that I didn't have my ulcerative colitis acting up again. Both negative. I have heard that endometriosis can pop up again after hysterectomy. Does anyone have any information on this? I'm scheduled for a c-scan this week. Also, could this happen after 20 years?

I was just reading the post from Settler and am surprised to hear you can get endo after a total hysterectomy. I had a total 20 years ago when I was 31 yrs old for endo and severe dysplasia. I had no choice....was in severe pain since I started having my period at age 14. I tried all the treatments and nothing worked. The only thing I regret about having the hysterectomy is I never had children but the pain was gone finally The problem I'm having now is severe pain when I have sex. I spoke with my gyn about it a couple years ago and he said it was from scar tissue and the only thing I could do is reconstruction of my vagina!! I haven't been back to a gyn since then and very seldom have sex because of the pain. Luckily I have a very understanding husband but its not fair to him and I'm really depressed.
I feel like my life is over at age 51..I'm on antidepressants now and pretty much just give up on everything. I am curious if anyone else is having probs with scar tissue ?

I have had endo for 15 years , I had my tubes removed and 1 ovary in 1999 ..The doctor then cleaned out as much as he could he stated my organs were glued together back then. Since then I have been dealing with the pain getting tumors and cysts that have been removed several times . I am gettin tired I am 35 and do have one child and asked my doc to just do a hysterectomy and he said due to all the organs glued together it would be a very dangerous surgery to attach without damage . My doc has been researching this for years trying to find a cure and I have faith in all he says .. Plus he says a hysterectomy is not for sure to take away the pain ... I am going in again for a removal of a tumor this month oon my uterus and he will try to remove some of the endo again .. I have had my gall bladder removed as well... that was a task I was suppose to go home that day but stayed for 3 days in the hospital due to complications. all these surgerys seem simple but you never know what can go wrong especially with everything glued together which is the mosty scariest part. During that surgery with the gall bladder they removed the last cyst at the same time ..
Well I hope this helps ..

Hi there my name is Heather.. i had a fullhysterectomuy 3 years ago.. I am only 27 now i was 24 at the time.. I had endometriosis.. I had one child thankfully. I named her Heavenly Anjel cause she is my anjel from god.. Anyway,, I am here wondnering why? My endo hasn't came back yet thankfilly. But i sitll have pain. I can't have sex with my husband hardley because well it hurts to much. I have went back and back to my gyn and they keep on saying it's just scar tissue and the onyl way to remove it is another Laproscopy and i am so sick of doing that. I have alot o fscar tissue built up. But i just had one last ear around this same time and i am just wondering if there is anyone else having to go threw this. I had the hysterectomy and thought that all of this was behind me and now i guess that i have to worry about vaginal cancer now.. There telling me that i have so many chances to get it now.. I am just tired of going to the doctor and them telling me that there is anothere surgery in my furutre.. whoa whoa ... i am excited for this one..lol not!.. i am young i think and i just am wondering why? why do we have to go threw this..Any of us.. And i am also wondering well i went to the doc tor and they were trying to get me on a program for insurance for young women who have had hysterectomies and there telling me that i am too young. i have to be 35 years of age. Well no offense to you women that are 35 or abvove, But they need some sort of insurance for young women or some sort of programs out there for us.. I didn't chose this.. Do you think that i wanted this. NO. But i have it.. So i wanna know where the help is for us.. well i know that this is alot. But i am just frustrated. if there is anyone that can help i would appreciate this alot. I am just at a standstill.. My hormones are going crazy today i guess.. Thanks everone who reads this.. Give me some insight please..heather27