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8 Years of Debilitating Pelvic Pain
My wife and I are looking for the best doctor to help us determine whether hernias are a factor in her eight year struggle with chronic and debilitating pelvic pain.
Late in 2009 she had an Open Roux en Y Gastric Bypass surgery at Hopkins Bayview in Baltimore. Dr. Thomas Magnuson performed the surgery. Within a few months, she started experiencing pelvic pain and was diagnosed with interstitial cystitis (IC)/painful bladder syndrome at Johns Hopkins Center for Pelvic Health. In speaking with Dr. Magnuson’s nurse at the time, we were assured that this could not be something from the surgery because they had never seen or heard of it before.
Prior to the gastric bypass, she delivered all four of our children by C-section and later had to undergo a laparoscopic appendectomy followed by an open laparotomy and 1 ½ week hospitalization for peritonitis (encapsulated –not free-flowing). Less than a year before the bypass, she underwent abdominal hernia repairs. She had more repairs less than a year after the bypass. Both involved mesh. In 2011, after the bypass and IC diagnosis, she had a laparoscopic hysterectomy. Finally, she had a VATS for a lung biopsy this past spring.
She has suffered from increasing pelvic pain over these past eight years and is housebound. Different urogynecologist have been unable to make progress with the situation. We tried an intensive and very costly treatment for Lyme disease and tick borne illness without much success. She has been left with using pain management and various pharmacological approaches to manage the pain with decreasing effectiveness. She has recently been able to conclude that the pain is nerve related and responds to gabapentin and medical cannabis, which is legal in our state. Her situation is rapidly becoming more dire. Her pain doctor has been moving toward a pain pump and has been very slowly decreasing her pain medicines. As this has been progressing, she has been getting extremely acute electric like nerve pain for 1-2 hour episodes in her vaginal area. This pain is like nothing she has experienced in this eight year struggle. The only thing that touches it is the medical cannabis. Once that was started, she has been successful for the most part by using this treatment when the spikes begin. The baseline pelvic pain has not been relieved.
When she coughs or when her bladder contractions are severe and painful, the pressure on her pelvic floor is very intense. When this occurs, it is also very hard for her to straighten out and walk. She gets a pinching sensation in different abdominal and belly areas, below the ribs above the belly button. Recently, in one episode, she felt like something large popped out, near where her appendix used to be. She massaged it back in, whatever it was. It was very painful.
We are becoming more concerned that there is something more serious going on inside her body that is being masked by the pain management. She recently read Dr. Towfigh’s NY Times article from 2011 about hidden hernias and is very interested. She is scheduled to get a Pelvic 3T Neurography MRI with contrast in a few weeks. Her current urogynecologist wants to look for possible nerve damage. This doesn’t seem like the exact MRI recommended by Dr. Towfigh, i.e. MRI anterior pelvis, no contrast, with Valsalva, and with images in all three planes. We are within driving distance of Dr. Belyansky, Dr. Bachman, and Dr. Adrales – and all three take our insurance! She has not been back to see Dr. Magnuson in many years and has been trying to schedule that as well. Her condition has been so acute for so long that we are constantly trying to prioritize doctor visits and coordinate between all the different specialists. She even developed chronic lipoid pneumonia last year that complicated this further.
We’d appreciate suggestions based on the three local doctors mentioned above and the overall situation.
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