So here I am again.... I had a surgery done on dec 11th where they were supposed to have gone in to look around and also take away some of the scar tissue to ease some of my pain. To my surprise the dr only looked around and closed me up. He later explained to me that it was a mess in there and there was nothing he could do. He wants and says i need to get a hysterectomy :(
Reason behind it is because I am on Lupron and have been for 2 yrs straight and he doesnt want me on it any longer. But stopping the Lupron would mean my period comes back and my period causes me to have kidney failure because the endo has attached to my kidneys. So the only way around this is to have my uterus removed. Only problem with that is that I do not have children. :( Always wanted one, Im great with them but now it seems that dream is drifting farther and farther away.
Today I went back to the dr and he said hes ready when I am ... to do the surgery. he explained he has to open me up for this he can not do it thru my belly button cuz its too dangerous. the endo is attached to my reproductive system, my kidneys, my ribcage, my gall bladder, my intestines and god only knows where else. Its completely taking over my body as well as my life. I cant sleep, I eat cuz i have to, I cry ALOT, I dont work anymore, this is the longest I have concentrated in a long time, and now I have all these meds I have to take.
Speaking of meds, I have been taking vicodin for the chronic pain for years straight. Today I was told that i can keep taking the vicodin but they are also trying something more long term . its called oxymorphone also known as OPANA. I know nothing regarding this medication only that it is another controlled substance and it is an opiate. I was wondering if anyone that reads this knows anything about that med? Got any good stories to tell me? bad stories? side effects? opinion on if I should try this or not? anything would help me right now since i cant really concentrate, or even work on this myself.
Sisters... my heart hearts. The emptiness I feel inside is scaring me. I dont understand why everyone keeps telling me that God never gives u more than u can handle and yet I am here feeling like I cant fight anymore. I feel like my mind is ready to shut down. So I think that God may not have forgotten me but I think he threw this at me and went on to take care of the world and it has been overlooked that I can NOT deal with this. This cross is harder and harder for me to carry on my own. So I ask my sisters to help me at this time. I dont want to give up the fight. I dont want to lose my will to live but it is slowly fading. I know someone out there has felt like this or feels like this. Please someone i ask you to save me or at least try. I am sinking fast and cant take the emotional strain this has on me. I hope you are all well... and i also hope u all have a pain free new year... thanks for listening sisters!!!
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If I were you I would do a lot of research before you agree to the hysterectomy. If your endo is as widespread as your gall bladder and kidneys removing the uterus will not help. The reason for this is that the endo lesions have their own estrogen and will continue to feed themselves. If you have your uterus removed you also need radical excision of ALL of the endo to stop the disease. Of course with endo even when a doctor believes they have removed everything there is still a chance of recurrence. I follow blogs of two endo sisters who have had hysterectomies and still continue to suffer, one of which is having surgery in the next week.
ReplyDeletehttp://myendometriosisandinfertilityjourney.blogspot.com/
I promise to update my blog soon. The doctors already did my hysterectomy and you are absolutely right. In a scam to make more money and not care about my health they removed my uterus but left my ovaries, who are releasing estrogen so the endo is being fed more n more every day. The pains I feel are horrific. I will check out the 2 endo sisters and follow them as well. Thank you for reading my info and for leaving a comment. Its nice to see that someone actually pays attention n cares. ttyl
ReplyDeleteI am sorry you were pushed to get a partial hyst. I was hoping I could get to you before it happened. While our circumstances are not the same. I would nof have kidney failure if I got off depro luoron. I was told after having my uterus removed and both ovaries all in different surgeries. I can not have another surgery unless emergancy. They damaged my bowels and after five surg I now have to live with whatever endo I have which there was still alot on bowels. I know I am jumping around, but due to an ovarian remenant it was like I never had my ovaries out. I guess what I am trying to say is find another doc. Even yours should have known before taking your uterus out it would not stop ovarian production. I am so sorry you are going through this and was robbed from your life. I do do not know if I helped or hindered. I guess I just wanted to say every story is different, but the same in some ways. I also wanted to let you know I felt the same hoplesness alot.
ReplyDeleteI feel your pain and will keep you in my prayers. Only someone who is going through this can completely understand the severity. My heart goes out to you and your husband. I am scheduled for my 4th Lap on Thursday since last February when I was diagnosed. I am scared of what I am going to wake up to because this is exploratory surgery. Please continue to blog because you have some very good material. God Bless & Yellow Hugs!!!
ReplyDeleteteresa thank you for reading and posting your experience. i am so sorry that you have had so many surgeries. The pain with the bowels i know exactly how that feels i go thru it everyday. Are your kidneys ok? The hopelessness was and still is alot to deal with. I will share what the aftermath of the hysterectomy did to me. Im not proud of what happened but i will share my story hoping that it will make some type of difference to someone out there feeling as we do. thank you for the support and for following my blog. it means alot to me.
ReplyDeleteLM.
ReplyDeletethank you for the prayers, support and for reading my blog. Good luck with your laporoscopy. I will pray for you and hope that its not as bad as some of us. when you get the test done ask what stage you are on and what it has attached itself to. God bless you on this journey we can all tell you its not an easy one for you or for your loved ones. Please keep us posted and I will blog as much as i can and keep putting things up as i get them. Yellow hugs to you as well endo sister.
sincerely,
Elsie aka fallen angel