Endometriosis Support Group
Endometriosis is a common medical condition where the tissue lining the uterus is found outside of the uterus, typically affecting other organs in the pelvis. The condition can lead to serious health problems, primarily pain and infertility. A major symptom of endometriosis is pain, mostly in the lower abdomen, lower back, and pelvic area.
Hi I'm new to this site and I', 17 years old and have just been diagnosed with Endo. I've tried numerous birth control pills (pill, patch, shots, etc) and nothing has worked. Appearantly, I've had this for quite a while, but it is still a mild to moderate case. The doctor mentioned putting me on Lupron, but my medical insurance wont cover it. Also, I'm a little scared about the side effects, whether or not I will be able to tolerate them. Then, I've heard from some of you that it usually doesn't work. At least not to the point of where the endo doesn't really bother you. I don't want to go back on the Pill because it didn't work, I'm scared about the Lupron because of all of the side effects, and the chance of it not working. But, I also don't want it to get worse, like to Stage 3 or 4 and it throw out my chances of having a child later. Then the doctor mentioned a hysterectomy, and that scared me to death, because what if I want to have a child later? You can't really "reverse" that surgery... So, any siggestions would be greatly appreciated...Because this is a really tough disease to cope with, I feel like I'm all by myself because nobody in my family, except for an aunt whom I don't speak with much anymore, has this disease. It makes me feel sort of by myself and it's really depressing...
BeckyK
I was on Lupron for six months when I was 24, I had to take a low dose of estrgen to lesson the side affects, but I had more problems after that and had another Laperoscopy. I haven't had any problems after having two children, so I am not sure I can tell you what you should do, but if you want children some day, hysterectomy would be the last resort.
deleted_user
Its possible to get insurance to pay for lupron treatment if it is bill correctly, well get pre-approval thru the drs office, stating that its used to treat endo and not used as birth control. Lupron worked for me, thou I took the treatment years after I was thru having children. Good luck with all.
deleted_user
Are you serious? Your Doctor actually brought up Hysterectomy before laparoscopy or something less drastic than surgery? Maybe you need to shop around for a new Doctor and find out what options you do have under your insurance.
deleted_user
No, my doctor did do an "experimental" laparoscopy to see why I was having so much pain, then she told me she found the Endo. She said it was a mild to moderate case, but would have to be closely watched. She mentioned all of my options after sugery, when I was in recovery and still "out of it." She told me what she found, then said she could put me on Lupron, or something similar that serves the same puropse, or the last resort would be to take everything out if that didn't work. So, at the moment I'm at a stand-still with all of this and don't know what to do next.
deleted_user
ok i dont understand why your doctor didn't remove it during the surgery, if she did the lap, then she should have lasered the endo out... yes it can come back, but still it would lesson the pain you are dealing with.. i will be starting lupron directly after my surgery, because it is supposed to help me get preggers... I would definatly seek another doctor though because you are way way too young to make the hysto decision, and most doctors wont even allow younger patients to even talk about it , due to the fact that it is not reversable. I know that everyone here is suffering with it..but there are plenty of other options to try before taking such a drastic step... if my doc mentioned hysto to me at the age of 17, i woulda walked out right then and found another. I would recommend you seek another opinon...honestly.
deleted_user
I was 15 when I was diagnosed, I definitely understand your confusion. I was in high school when I first tried Lupron, it worked great for me but I did have a little bit of a problem with the side effects, mostly hot flashes, the worst part for me at first was that I lost a little bit of hair (no one noticed except my mother and my hairdresser, well and i noticed of course). The first time I was on Lupron I stayed on it for 2 and a half years. I'm not sure about now, but at the time that was much longer than recommended. I had to go off of it because i started having emotional/hormonal issues, crying for no reason, depression, ect. All in all the relief it gave me was worth the side effects. Unfortunately the second time i went on Lupron it didn't work for me, I'm not sure why. The advice your getting about your Doctor sounds good, I had doctors tell me about hysterectomy as treatment when I was young, but they all mentioned that I was way to young to have that as an option. There are some great doctors out there, who understand and give good advice, shop around. Good Luck!
deleted_user
From what I can tell, the doctor did tell me about the hysterectomy, but she had also told me that that would be her absolute last resort. She had said that there were some other things she could try, and then if they didn't work, to the standards she is looking at, then she would do something like that. I go to see the doctor today, so I should know something about the medicine, pathology, and what she wants to do next. But, thank you very much for your advice/replies.
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