ENDO Messages for February, 2004: Re: scared and need advice

Re: scared and need advice

From: anonymous (anonymous@obgyn.net)
Thu Feb 12 08:34:49 2004

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My first piece of advice would be to stop trying to hide your pain from your mother. It is ok to need support and love, especially when you are hurting. You shouldn't feel guilty. Instead, be as open and honest as you can, and don't try to shield your parents, it is their job to shield you! Secondly, I would stay as far away from Lupron as you possibly can. Let me put it this way, there is no cure for endometriosis. Lupron was explained to me by my doctor in this way: you take the shots for six months during which time your endo pain may or may not subside, however you must endure a whole new set of symptoms. Then, after six months of treatment, you stop the shots because they cause such severe bone density loss(even if you are taking massive doses of calcium) and you hope that your endo pain does not return again for another six months. He said that he would never ever ever put anyone on Lupron for longer than six months in a life time because of all the known and unknown side effects, so taking a second round of Lupron is not a good option. So, a year from now, you will be in the same boat you are in now as far as pain, only you may be suffering from osteopenia (early osteoperosis), too. How does that seem like a good option to anyone?? My suggestion would be to start the continuous bcp, and keep trying different kinds and doses until you find one that stops your period completely. It took me two years and I had to take a high dosage pill before I found one that worked for me. Then, I would find an endo specialist who takes your insurance, and schedule a surgery. The surgery that regular obgyns can do is not enough. They are simply not skilled enough to make any impact on the endo. Think about it for a second...they make their money from the ob portion, delivering babies...not the gyn portion, so why would they study things like endo enough so that they could actually make a difference in the disease when that is not where they get their money from. My last piece of advice is probably the most important: learn what you can do and focus on that instead of focusing on what you can't do!! I had to give up a dream of dancing which I had been pursuing since the age of 2, but that is life. I didn't let that get me down and I didn't let that stop me. Now I have a college degree, which took me 5 and 1/2 years to earn due to the endo. We all have our burdens to bear, but if you focus on what you can do instead of what you can't do, you will find that life is much more pleasant. I wish you the best and pray that you learn to deal with this disease in a constructive and inspiring way!!

At Thu, 12 Feb 2004, Softball wrote: >
>I was diagnosed with Stage IV endo on 1/23. Since then I had been
>pretty much pain free until now. When I went to the doctor for my post
>op visit we discussed the treatments at this point. He said I had
>constant birth control or Lupron, but he said he doesn't like putting 19
>year olds on it. Therefore we chose the constant birth control. Well
>starting this week, my pain is back and everyday it's getting worse. I'm
>at the point that I'm doing all my homework and everything in my bedroom
>in order to use the heat pad without my mother knowing. I'm trying to
>keep it from her as much as possible. I am scared to death. I don't
>really want to do Lupron, but I feel like I may not have much of a
>choice because I have tried soo many things already and nothing seems to
>work. If anyone has some advice I would really appreciate it. I don't
>go back to the doctor until April, and I don't know whether to call him
>or not. Feel free to email me anytime.
>
>--
>Softball
>

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