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    Tuesday, July 06, 2010

    Tango Endo Hyst

    Since I had my first OBGYN appointment (and maybe earlier), I have had every symptom of Endo, and not known about the disease, never even heard of it except in passing. I never did any research to find out anything about it, because it didn't effect anyone that I knew. Not that I knew of anyway.

    My doctor never spoke to me about Endo, risk factors, or anything else, except for when I asked him about having a hysterectomy. Hysto was the only option I knew of that might finally relieve my debilitating pain and excessive bleeding. I would no longer have to worry about when my cycle was going to start, and my bowels wouldn't act up so much if I didn't have a uterus and thus, didn't have periods that, of course, were the only possible thing I could think of that might be causing all of the problems.

    Pretty logical thought pattern, especially if you've no idea what Endo is, or that you might have it...

    Throughout the years, I have been to the ER repeatedly for severe menstrual pain, and even spent 6yrs on Depo at one point to prevent periods and the pain that went along with them. Unfortunately for me, another side effect was severe weight gain, elevating my genetic risk of diabetes, heart disease, high blood pressure, and degenerative arthritis, so I had to stop getting the shot that improved my quality of life so much.

    The only mention my doctor made about Endo, was during our surgical consultation, he mentioned off-hand that he'd like to leave my ovaries, but if there were an unforeseen problem, like endometriosis or something, he might need to take them too. That's it. No other mention of it, and I thought nothing of it. My OB had always given me very complete information about everything, so when he just shot past that possibility, I assumed that there was very little risk of any such a thing being the case or being necessary. I also assumed that the only way to take care of Endo, was to remove the parts effected. That's the way he said it anyway, and I could always trust him, so I had no questions.

    So when we went into surgery, and he told me during the procedure (I was awake for it, spinal block) that he was going to have to take my ovaries and tubes because they were covered in Endo, I thought that was my only choice, the only option available to me, and I agreed to their removal.

    Now, 6wks later, I come to the Endo forum on my beloved HysterSisters to discover that there were several options available to me. Options that I had never heard of and that had never been discussed with me?! I could have KEPT my ovaries?!? No arguments with my DR over HRT vs NHRT/bio-identical, no menopause at 34. No late-night marathon reading sessions to get up to date on information I shouldn't have needed until at least 10 years from now. No weakness or frailty due to lack of hormones, no crying jags, no emotional trauma...

    I feel cheated and lied to. I feel like my DR just did what was most convenient for him, instead of actually doing the work necessary to give me the proper and complete medical care that I deserved.

    Just because I didn't know, doesn't mean that I should have been taken advantage of like this. I should have been informed, even if it was right there on the operating table! Even if it was just a quick "hey, you have endo, that's why you've been hurting so bad all of these years. I'm going to go ahead and take your uterus because you don't want it anyway, but there are methods we can try to maybe save your ovaries. Do you want to try those first, and risk surgery again if they don't work, or would you like me to take them now and start you on hormone replacements to prevent menopause, that you'll have to take for years until you hit a "normal" age for menopause?"

    Really, would those few short sentences have taken so very freaking long to spit out instead of just ripping out everything that made me the strong and capable woman I once was? I have a doctor's appointment again tomorrow to talk to him about these issues.

    For some odd reason, my Dr also seems to think that I only need one type of estrogen, no progesterone, and no T, even though my body was producing three estrogens, P, & T 6 weeks ago. Until earlier today (my 6wk post-op appt.), when I set him right, he didn't think anything of giving me concentrated horse urine to mimic my missing estrogens instead of something that is biochemically identical to what my body, until very recently, produced on it's own.

    I think I'm going to try to find an Endo specialist or an endocrinologist if I can't get my OBGYN to do the job correctly. Heck, I might do that anyway. I will likely be talking to my GP as well, to see if I can maybe get him to comply with my insistence on receiving complete and proper health care; especially if my OBGYN refuses my needs. 


    Lila said...

    I've read that male docs would not so readily "remove" their own two organs that produce hormones for them....but it has just somehow been "accepted" through the years that the organs women need for similar purposes are "dispensable".
    So sorry to hear you were not given the opportunity to make an informed decision!

    Anonymous said...

    great post thanks