By Nancy Petersen, RN retired, March 2016, Reviewed 2020
When do you stop pursuing care with the local GYN and think about finding greater expertise?
I know about financial constraints, but I see folks all of the time having 3-4-6-7 surgeries and still in pain, all of those generating substantial costs and debt.
If a gyn has not been able to alleviate your pain in two surgeries and other factors such as the uterus, ovaries, bladder and pelvic floor are not issues, then likely your disease outstrips the local gyn’s ability to deal with it effectively.
What worries me is then I see folks saying ok, I am done, I am going to have it all out. Well great but if there is nothing wrong with the uterus, tubes and ovaries and you have it all out you still have endo and the subsequent pain it causes. I know about this from long personal experience having had substantial pain for some 22 yrs after my total hyst, followed 6 weeks later by a Lam and fusion of my spine which did not work either. So for that 22 years, I slept less than 2 hrs a night in 20 minute segments, thinking that was my lot in life. Bowel pain, bladder pain, low back pain, white hot leg pain, continuous. No one mentioned that endo might be an issue until I did after listening to patients talk about their experiences when I was lecturing across the US and Canada. So my revolving OR door was a total hyst, appendectomy and laminectomy and fusion of my low back, NONE of which relieved symptoms. In those days, 1960’s, no one had a clue.
Still today most are clueless as to what we need. For me, finding greater expertise brought dramatic relief, I did not need to explore pelvic floor therapy, bladder care and my uterus tubes and ovaries were already eliminated as a source of pain in 1969. Endo however was not completely removed at that time.
So consider if you have already had 2 or more surgeries and pain persists, you may need greater expertise in your evaluations as to the source of your pain and to more effective care, as it is doubtful that more surgery or care with the same person will move you ahead. Out of the 40,000 gyn’s in the US less than 200 have been identified as doing effective surgery for endo, yet most consider themselves experts in the management. I think you deserve better and encourage you to move heaven and earth if possible to look for better options. The only way you gain control of this disease is to educate yourself so that you understand which of the treatments offered are likely to help, and to leave those more likely to do harm.