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Re: Daughter with endoFrom: anonymous@obgyn.netWed Apr 20 12:21:30 2005
At Wed, 20 Apr 2005, Patti wrote: > >Hello out there. I am a mother of a 15 year pld with endo. She had her >1st lap in Jan. 05. The surgeon was unable to remove a lesio that was >on her left ureter and on a nerve ending (controls her left leg). She >started Lupron the end of January. Her pain is slightly better but >certainly not gone. She has so many side effects it's scary. Her life >is so difficult by any standard but she's only 15. My question is >this...she is now starting to bleed and she is not due for her next >Lupron shot for a couple of weeks. Has anyone else had this side >effect? Should I call her doctor? hi Patti. My name is Danielle and i am 22. I have had stage four enod since i was 13. I have been on every drug and have had every procedure you can think of (including a complete hysterectomy). I even went to see one of the top docotors in Atlanta, GA two years ago. I have never joined a chat group because it is hard to relive, but maybe my experiences will help you and your daughter, and maybe i can start to heal myself. When I was 15 i was put on Lupron. it didn't work, in fact, in my case it made my symptoms more severe. Lupron is not for everyone!! Lupron is known for it's scary side effects. It is very hard on the body especially one so young because what it basically does is throw you into menopause. It did not work for me. My pain increased, my spontaneous and heavy bleeding increased, and i didn't have control over my body or my emotions. When i did research a few years ago on the drug i found very mixed reviews. I would suggest getting on goggle and try to find some case studies. Maybe they have made advancements in the last few years. But i do know this. The reason some doctors prescribe Lupron is because that has been the "way" to treat endo. A patient comes in with endo, they do a lap. and burn out what endo they can then they prescribe Lupron. It is okay to question your doctor. Make him/her do research. Find out any advances, because there are many. They might not be directly available in your area but your doctor can find out about it. Get several opinions! I love love my doctor, and he told me, "Danielle, I feel that my level of capability is not advanced enough to treat your case. I have done research, and for as young as you are and how advanced the disease is, we need to find someone more specialized." And he was a wonderful obgyn. Trust me I know, i am going to be a doctor myself ( a dentist but I have done extensive research on this topic and have given two speeches at the school). The articles are sometimes hard to follow, unless you are a scientist, but it might help. What other medication is she taking? When i was younger i found that depo shots worked for a while. Everyone is different which makes this disease frustrating to both the patient and the doctor. I am very happy to see that you are treating this aggressivly and taking it seriously. My first doctor did not and i am now getting ready to have my ninth surgery, even after the hysterectomy. My prayers are with you and your daughter. My sister is 15 and it has come to our attention that she too has the same symptoms. Right now she is taking depo and is doing okay, not great, but okay. I need to ask a question as well. My mom and i went to the doctor yesterday and found out that i have to have another surgery. I have endo and intersitial cystitis. I am trying to save my bladder as well as control my endo. My mom is a very strong woman but now that she has two daughters consumed by pain it is taking its toll. I am scared for her and i am having a harder time trying to reach her because i know she is blaming herself. Next month my sister and i both might have to have surgery. i am at a loss of words right now on how to comfort my mother. She has been my pillar for so long and now i need to be hers. She is even helping me pay for dental school. She is an amazing woman and she has raised amazing daughters but we are all starting to slip into this stressful, dark, pain filled world. What can i say or do to keep us afloat? I still have three years until i graduate and maybe several more surgeries and now my baby sister is ravaged by this disease? Please moms out there that are dealing with this or have dealt with this, how did you do it?!? Thank you so much for your time and hopefully, patti, you and your daughter can find the medication that will work for you. Sometimes its trial and error and it is a frustrating fight. I pray that you both have strength and God bless.
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