Hi...I'm new to these boards, and relatively new to chronic pain. By way of history, I was diagnosed with endometriosis several years ago, underwent a hysterectomy in 1/06; however, the surgeon only removed the organs and not the disease. I still suffered from the horrible pain, was in the ER every month for a long time, went to countless dr's who refused to do anything because they just didn't believe me, and finally this past Feb., after being admitted to the hospital, found a doctor who recognized that I actually was in pain and has been willing to treat what he now thinks are more likely endo adhesions. He's made it clear, though, that there is no "cure" but, rather, we simply have to manage the pain. I have an appt with a pelvic pain specialist at U-M next month and I'm hoping he'll be able to manage it a bit better than what we're doing now. I'm only 42 y/o, and realizing that I can't live my life the way I used to or want to hasn't been easy.
I don't really have any questions right now, except to maybe hear what treatments others are using to manage their CP and how everyone handles living with CP.
Thanks for reading - I hope to get to know everyone and be of some support to others living with this condition!
Very nice to meet you. I'm sorry for the reason that you found us, but you came to the right place! If you've been doing any reading here, I'm sure you've seen what a great little pain family we have here, and new members are always welcomed with open arms!
I don't share your specific pain issues, but I am chronic and have been told the same........ No cure, just pain management. I am truly blessed to have an amazing PM doc, and I have lived with this for a while, so I guess I've reached some level of acceptance. But please know that even with a certain level of acceptance, we all have our days, (sometimes weeks or months ) where we still have a hard time wrapping our brains around this crazy life of chronic pain. So don't hesitate to vent or ask for support. It really is quite a specialty here.
Again, welcome aboard! I look forward to learning more about you in the future. Take care and post often. CMP/MM
Welcome to the boards, Katie!! I, too, have been dealing with the whole endo/adhesions thing for years, and it's a rough road, but managable...with the right doc to treat your pain. I'll be praying for you, and I look forward to hearing more from you soon.
Hi Katie! Welcome to the boards. I am so sorry that we share the wrath of chronic pain together along with many other pain patients on this board but this is the perfect place to come vent and chat with others who understand what it is like to live day to day with pain.
Katie, although it is not my current problem, I suffered with endometroisis from age 9 to 24 when I had a emergency hysterectomy due to this disease. The adhesions and pain from this disease are significant and the hardest part of the disease is finding a doctor who truly understands and knows how hard this disease can be on other organs as well as the female reproductive organs. I had bowel and bladder involvement as well as female repro organs.
Anytime you want to chat about this disease I would be more than happy to share my experience. I ended up at John Hopkins in Baltimore, MD and they diagnosed my condition after many other doctors missed it.
Again welcome to the board and I look forward to chatting with in the future. I promise you that I don't chat as much as some others on the board. I am one of the quiet ones on the board.
Painaway - is the endo/adhesion issue what is causing your CP today? If so, what are they doing for you?
My doctor, who has referred me to the pain doctor at U-M suspects that he might want to put me on the fentanyl patch, and that makes me kinda nervous. Currently I'm taking Vicodin ES, anywhere from 4-6 per day, every day. While this keeps the pain manageable most of the time, I still have a ton of flare ups.
Do PM doctors usually go from orals, like the Vic ES, right to a patch or do they try other/stronger orals before making that leap?
Again, thanks for the welcomes and I look forward to reading everyone's story and gaining some insight into my new world! ~Katie
Welcome. I'm sure you'll hear opinions from others, but most consider the patch to be a very big jump from your current meds. It's more common to go w/ oxycodone or morphine before jumping up to the "big guns." You might check out a recent thread called "the progression of meds," or something along those lines to get a better idea of the different strengths.
I think most people here would say start on a low dose of long acting meds [morphine or oxycodone usually] and use your current meds for your flare-ups or break-through pain.
Last edited by Confused089; 08-23-2008 at 12:57 AM.
I too suffered from endo. from a very young age and now I see my daughter who is going through same thing. My sister and my mother have same problems.
My partial hyst. was at age 35 and full one at age 45. What hurts me? Since endo. was so bad, it attached itself to colon, ovaries, bladder and some other internal organs, even though endo is uterus's condition.I had to have laparascopy twice after both surgeries; surgeon reliesed some scar tissue for me and it helped my pain a tad...
I developed a lots of scar tissue after both surgeries and of course causing some pain, but I can handle it. Worse is when you use your bladder or colon (pain worsens), but compare to my resent problems, I really can say I am OK.