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Post by kari56 on May 8, 2012 18:43:12 GMT -5
Hey Ladies! First time poster, but looonnngg time reader After 3 laser laps and horrible doctors, I finally had surgery with a specialist (Dr. Orbuch in NYC) in April. Everything went great, she was able to excise 9 spots of endo (including bladder), removed my appendix and diagnosed me with IC as well. So my question is, now what? Did you go back to your previous gyn? Seek a new Dr? Continue with the specialist? As much as I love Dr. Orbuch, she doesn't take insurance and I just can't pay $400 a vist to see her- plus she is about 2 hours away from me. I got my period yesterday and its as bad as it's ever been, but of course I'm only 3 weeks post op. I'm just getting really anxious about the possibility of the pain not stopping- and not knowing if it's endo or IC. Anyone have/had a similar situation? Thanks for listening!
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Post by semicolon on May 8, 2012 19:21:03 GMT -5
Welcome! I am still in contact with my specialist but after my surgeries I got a regular ob/gyn. He knows a bit about endo, but his main thing is the ob side of things. The way I figure it, I already have an expert if I need one but this guy can handle the other stuff (so far I haven't needed much).
Good luck with recovery, the first period after can be bad so take it with a grain of salt!
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Post by Karen on May 8, 2012 19:50:38 GMT -5
Another lurker, eh? Welcome! Feel free to post an intro thread! I'm afraid I can't comment much about your question other than to suggest you find someone that insurance covers AND you trust to cover some of the basics, and if you have the need to see a specialist again, you know you have the option. Just my two cents!
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Post by omaklackey on May 8, 2012 21:28:51 GMT -5
Hi, I had the same situation with the specialist vs. home doctor. My primary care doctor is not the best either so I'm still looking for a "better one". I keep in touch with my specialist by phone. I'm planning a trip to see her maybe once a year unless I feel good enough to put it off. As for the pain from IC or Endo, its all the same so it doesn't change what you do for it. (it hurts either way...) I would suggest checking out www.ic-network.com/forum/ for some great IC information. I highly recommend the home instillation's which is a bladder cocktail that you put into your bladder to help heal the ulcerations and for whenever you have pain. Its the top of the line treatment right now for IC. I also have IC and find the home instills the best treatment. The very good news about IC is that it CAN go into remission, especially with sticking to the DIET and using the home instills. (Unlike ENDO which seems to just keep coming... ) . I've been in remission since January with my IC and it can last several years depending on how careful you are etc. Any questions don't hesitate to PM me. (I'm stage IV endometriosis and severe IC)
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Post by kari56 on May 9, 2012 5:35:43 GMT -5
Thank you all SO much! It really helps to have people who understand!
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Post by semicolon on May 9, 2012 6:27:39 GMT -5
Oh yeah, Omak has a good point that a good primary care doc can be very helpful. I have a good one who will refer me wherever I want/need which has been very helpful from before my diagnosis to now (and he was a new doc right before all my problems started less than 2 years ago- what an introduction!!).
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jtean
Full Member
Posts: 119
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Post by jtean on May 9, 2012 19:46:12 GMT -5
Maybe you can find a pelvic pain specialist? They take insurance and should be well versed in endo. The doctor that did my lap/ excision is also my normal obgyn now. She's a pelvic pain specialist who also specialists in endo, so i'm sure there are others out there like her.
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