Endometriosis after complete hysterectomy

I had a partial hysterectomy in 1996, I was left with just my overies, I had ahesions that had spread to my intestines and bladder.The doctor had to take a small portion of my bladder during surgery.In september of last year I had my overies removed to make my hysterectomy complete.On oct. 5th I went to the ER they thought that I had appendicitis, but after all the test were done everything came back negitive.The ER doctor said to go back to my OBGYN, he is almost possitive that my endometriosis has come back. How can that be possible since I had a complete hyterectomy to remove my endometriosis.

Hi!

I've moved your post here to the Post-Op forum where you're likely to get input from women with experiences to share, whether the pain be from endometriosis or some other cause.

I'm sorry you are having problems this far past your surgeries. Unfortunately, there are some other women who have had endo return after surgery. Microscopic bits of endo can be hard to detect and will feed on estrogen, whether it is from the ovaries or from estrogen therapy. Did you start estrogen therapy right after surgery or did your doctor wait for a while before starting? There's no one set way it's done. Some doctors never allow hormone therapy and others will allow it after a waiting period, or will prescribe estrogen along with progesterone or progestin as that can help counteract the effects of estrogen on endo.

I hope your doctor can figure out the cause of your symptoms and that you get relief soon!

s

I too would like to know more about what happens with endo after hysterectomy. My doctor did my surgery vaginally - and took out one ovary because it was covered with endo and had an endo related cyst. Now I wonder - do I have endo in other places - I am still mad at my doctor for not switching to a TAH to check it out - I still have pains in my stomach - that are unexplained. Good Luck to you.

I just had a TAH and Dr. had to stop surgery after 4 hrs.because I was going to need a blood transfusion if he continued. I was filled with endo, adhesions, fibroids and rt. ovary was wrapped around ureter (which is why the surgery took so long). Dr. wasn't able to get all endo or bladder lift. i am now taking injections of Lupron to eat the remaining endo and will have a bladder lift in about six months. I have been reading about Lupron and the side effects don't sound very good. Has any one else taken Lupron and how did it affect you?

I am sorry you are having these problems. You might ask your Dr. about Lupron.

dixieo

I took Lupron for six months before my LAVH, the mood swings where bad. I sometimes had to hide away from my family to spare them. My Dr. prescibed norethindrone acetate along with the Lupron and it really helped with the hot flashes. Asking for support from family and friends really helped me to get through. Best of luck to you!

Endometriosis can come back for some people even without taking estrogen from what I hear. Yikes! You body produces it in small amounts even without the ovaries. I took Lupron for 6 months a few years ago and I had hot flashes and insomnia just the symptoms I have now after my hyster. I have read horror stories on it though. I hope it is not the endo that has returned. Good luck to you and hope you feel better real soon. Tiffany

For those of you discussing Lupron, there are several threads at this site. I know I started one myself!

Five years ago, I had a LAVH, keeping my ovaries, because of endo. I am currently experiencing pain we believe is endo related. As endo is microscopic in its early stages, it can not always be detected. During my lap, my dr cauterized all the endo he could see and that was safe to cauterize. He would not touch what was on my bowel walls as the chances of puncturing the bowel was too high. Also, he could not cauterize what was on my uterus because it was literally covered and cauterizing that much in one spot would have caused my other organs to adhere to my uterus. Thus, I had a hyst a few weeks later.

My current pain is probably endo, but even if I have another lap, only what has grown beyond the microscopic stage could be seen. And my dr stated that often times, the pain is worse when endo is the smallest. As it grows, the nerves die so you don't feel it anymore. This is not true for everyone and of course the scar tissue is another matter. (Note: Due to complications, my dr is going to error totally on the side of caution and ONLY do surgery if it is an ABSOLUTE necessity! My body and surgery do NOT get along well! So, since my pain is tolerable, we are playing the waiting game.)

Having my ovaries means they are producing estrogen and feeding the endo. But we felt this risk was worth keeping my ovaries because they were healthy and I was only 25. Eventually, I will have to have them removed to control the endo.

Having a hyst does not necessarily cure you of endo. For my sister-in-law, it seems to have been a cure. She had her hyst over 13 yrs ago and has no problems with endo to this day. As a matter of fact, when I started having pain, I questioned her and she reminded me she had a complete hyst so she has no endo. I had to inform her that having a complete hyst does not necessarily mean you have no endo as any microscopic stuff is still there! But she had her ovaries out and with her HRT, there is no estrogen feeding her endo.

I have endo on my bowel walls, besides whatever is there in microscopic form, so my estrogen is feeding all of that. If you have endo, and you have one or both ovaries, they will feed whatever endo you have, whether you can see it so you know where it is, or whether it is microscopic.

Best wishes to those of you with endo. There are various threads on this site about endo if you need more info about endo specifically. I have read that if you can, it is best to find an endometriosis specialist, but there are not very many of them and you must live in their area. I have not found one in my area, but my dr is an excellent surgeon and OB/GYN who deals with endo.

Be very careful with Lurpon. I had 6 months of injections 5 years ago to shrink fibroids and treat endo. After 3 months I felt great & except for hot flashes and a small amount of bleeding all the time, the pain was temporarily gone and I lost weight. After 6 months I had severe short term memory loss and strange behavioral changes as well as drastic mood swings (I got angry and really agressive easily). At 9 months (3 months after last injection) I continued with the memory loss problem, had hair loss and problems with motor functions leading to several falls, one of which left me with a pretty big scar on my knee. Overall, it is only a temporary solution to what is possibly a long term problem. I would ask your doctor about being on it as short of a cycle as possible to avoid any possible side affects. When I decided to do it, I knew about the risks but the pain and bleeding that I was dealing with were so bad that I thought is was worth it. Part of it was worth it but but knowing what I do now, I would never do it again.