icnmgrjill
10-08-2009, 12:51 PM
(By Jill Osborne MA - 10/8/09)
Spend any time in an IC support group and you will eventually hear the story of a patient who has undergone an unnecessary surgery because the physicians either missed a diagnosis of IC or did not believe that IC could cause severe pain. Case in point is one of my oldest IC friends, Linda. One day her IC flare was so severe that she went to a local emergency room for help with the pain. Despite her long standing diagnosis of IC and her insistence that she was having bladder pain, the physicians on duty believed that she needed to have an appendectomy. Just a few hours later, she was whisked into an emergency surgery and had a healthy, normal appendix removed.
It's a fact of life that some physicians will not know what IC is or, worse, believe that IC isn't real or can cause severe pain. I know that there are many of you today who can share similar stories of blank looks from emergency room personnel and accusations of symptoms being all in your heads. But if you feel that you've been harmed, fighting back might be the right thing to do.
Consider the story of Marine wife Angela Burch. She had pelvic pain for several years. Her urologist believed that it was the result of interstitial cystitis while her internist and OB-GYN suspected that she had endometriosis. Despite her urologists report, her other doctors insisted that hysterectomy was needed and removed her perfectly healthy uterus. She became the first IC patient that we're aware of who was awarded a two million dollar judgement for medical malpractice.
Some physicians are also trying to prevent this tragedy by raising awareness among their peers. This month, the Journal of the Society of Laparoendoscopic Surgeons published yet another paper (Early identification of interstitial cystitis may avoid unnecessary hysterectomy) strongly encouraging physicians to rule out IC before considering hysterectomy. Drs Chung and Jarnigan (Midwest Regional Center for Chronic Pelvic Pain, Ohio) conducted a literature search for articles dating back to 1990 that covered interstitial cystitis and hysterectomy. The literature review found that hysterectomy is performed more often in patients with undiagnosed interstitial cystitis than in patients with a confirmed diagnosis. In these patients, the pelvic pain did not lesson after hysterectomy and, sadly, further supported the case that the bladder was the source of the pain. Tragic indeed.
You, the IC patient, must be extremely proactive when surgery is considered. You should be asking many questions, such as:* Why is this surgery recommended? What evidence is there that proves that I need this surgery? What will the surgery involve? How many of these surgeries has the physician done?What is the success rate? What complications, if any, has the physician encountered? How long will the recovery take? Is it covered by your insurance?
Bringing a family member or friend along with you to any appointments discussing surgery is ideal. They can help you ask questions and, after the appointment, help you review what the doctor said and be a sounding board. I firmly believe that if Linda had had a family member along, the emergency room might have been more receptive to her history of IC and bladder pain.
Second opinions are also vital. If you have any doubts about a surgical recommendation, getting a second opinion from another medical professional is vital. ICN member Carol was scheduled to have her bladder removed. Luckily, her physician suggested that she get a second opinion from a major IC research center. The second urologist discovered that her bladder was actually in fairly good shape and certainly not needing removal. Her pelvic pain was coming from severe pelvic floor dysfunction. Her surgery was cancelled and physical therapy was scheduled shortly thereafter.
It can be very helpful to talk with other patients who have had the same surgery. You want to hear not only success stories, but also difficulties that patients may have faced in their recovery. The ICN also has several discussion boards in our support forum dedicated to sacral neuromodulation, bladder removal, botox and other therapies where you can reach out to patients for their real life experience with a procedure.
Take some time to educate yourself about the proposed surgery not only with literature or videos that your physician might provide but also on the web. There are several websites online that offer extensive discussions of surgeries, including some videos for those of you not faint of heart.*I particularly like our US government websites, including the National Institutes of Health, the National Library of Medicine (PubMed) and the FDA.
If, for example, you are considering a bladder suspension surgery, you can research the various slings and their surgical results via PubMed.* The FDA has a record of complications (the MAUDE database) experienced by patients who are having medical devices implanted, such as sacral neuromodulation. These are worth browsing through. MRSA infections are consistently found in those reports relating to Interstim thus, as a patient, you might want to ask the surgeon if he has seen MRSA infections in his hospital or clinic.
I want you to be informed, strong, confident and proactive when you seek medical care. Stand up straight. Look your physician in the eyes. Don't be afraid to ask "Is this surgery necessary??" If yes, then ask "Why?" As always, if you have any questions, comments or ideas, please send them to me directly at: jill@ic-network.com.
Spend any time in an IC support group and you will eventually hear the story of a patient who has undergone an unnecessary surgery because the physicians either missed a diagnosis of IC or did not believe that IC could cause severe pain. Case in point is one of my oldest IC friends, Linda. One day her IC flare was so severe that she went to a local emergency room for help with the pain. Despite her long standing diagnosis of IC and her insistence that she was having bladder pain, the physicians on duty believed that she needed to have an appendectomy. Just a few hours later, she was whisked into an emergency surgery and had a healthy, normal appendix removed.
It's a fact of life that some physicians will not know what IC is or, worse, believe that IC isn't real or can cause severe pain. I know that there are many of you today who can share similar stories of blank looks from emergency room personnel and accusations of symptoms being all in your heads. But if you feel that you've been harmed, fighting back might be the right thing to do.
Consider the story of Marine wife Angela Burch. She had pelvic pain for several years. Her urologist believed that it was the result of interstitial cystitis while her internist and OB-GYN suspected that she had endometriosis. Despite her urologists report, her other doctors insisted that hysterectomy was needed and removed her perfectly healthy uterus. She became the first IC patient that we're aware of who was awarded a two million dollar judgement for medical malpractice.
Some physicians are also trying to prevent this tragedy by raising awareness among their peers. This month, the Journal of the Society of Laparoendoscopic Surgeons published yet another paper (Early identification of interstitial cystitis may avoid unnecessary hysterectomy) strongly encouraging physicians to rule out IC before considering hysterectomy. Drs Chung and Jarnigan (Midwest Regional Center for Chronic Pelvic Pain, Ohio) conducted a literature search for articles dating back to 1990 that covered interstitial cystitis and hysterectomy. The literature review found that hysterectomy is performed more often in patients with undiagnosed interstitial cystitis than in patients with a confirmed diagnosis. In these patients, the pelvic pain did not lesson after hysterectomy and, sadly, further supported the case that the bladder was the source of the pain. Tragic indeed.
You, the IC patient, must be extremely proactive when surgery is considered. You should be asking many questions, such as:* Why is this surgery recommended? What evidence is there that proves that I need this surgery? What will the surgery involve? How many of these surgeries has the physician done?What is the success rate? What complications, if any, has the physician encountered? How long will the recovery take? Is it covered by your insurance?
Bringing a family member or friend along with you to any appointments discussing surgery is ideal. They can help you ask questions and, after the appointment, help you review what the doctor said and be a sounding board. I firmly believe that if Linda had had a family member along, the emergency room might have been more receptive to her history of IC and bladder pain.
Second opinions are also vital. If you have any doubts about a surgical recommendation, getting a second opinion from another medical professional is vital. ICN member Carol was scheduled to have her bladder removed. Luckily, her physician suggested that she get a second opinion from a major IC research center. The second urologist discovered that her bladder was actually in fairly good shape and certainly not needing removal. Her pelvic pain was coming from severe pelvic floor dysfunction. Her surgery was cancelled and physical therapy was scheduled shortly thereafter.
It can be very helpful to talk with other patients who have had the same surgery. You want to hear not only success stories, but also difficulties that patients may have faced in their recovery. The ICN also has several discussion boards in our support forum dedicated to sacral neuromodulation, bladder removal, botox and other therapies where you can reach out to patients for their real life experience with a procedure.
Take some time to educate yourself about the proposed surgery not only with literature or videos that your physician might provide but also on the web. There are several websites online that offer extensive discussions of surgeries, including some videos for those of you not faint of heart.*I particularly like our US government websites, including the National Institutes of Health, the National Library of Medicine (PubMed) and the FDA.
If, for example, you are considering a bladder suspension surgery, you can research the various slings and their surgical results via PubMed.* The FDA has a record of complications (the MAUDE database) experienced by patients who are having medical devices implanted, such as sacral neuromodulation. These are worth browsing through. MRSA infections are consistently found in those reports relating to Interstim thus, as a patient, you might want to ask the surgeon if he has seen MRSA infections in his hospital or clinic.
I want you to be informed, strong, confident and proactive when you seek medical care. Stand up straight. Look your physician in the eyes. Don't be afraid to ask "Is this surgery necessary??" If yes, then ask "Why?" As always, if you have any questions, comments or ideas, please send them to me directly at: jill@ic-network.com.