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Re: Adhesions? Let me tell you about mine......(PART 2)-HelenFrom: Christine (anonymous@obgyn.net)Wed Mar 24 11:48:23 1999
At Wed, 24 Mar 1999, Helen wrote: > >At Wed, 24 Mar 1999, Christine wrote: > >>Hi Helen: >>One thing I am curious about, I know you are waiting for the gel barrier >>to be approved by the FDA, but why haven't you followed up on the return >>of the pain? Just because it feels just like the pain you had before you >>had the lap in 1997 that confirmed it was adhesions, does not mean it is >>necessarily the same thing! >```````````````````` > >Dear Christine and others who suffer from adhesions: > >There is no way that I can tell you about everything I have done in >order to try to find the *correct diagnosis* for the chronic pain I have >endured on a daily basis since that nightmare of a laparotomy surgery in >1970!!!!!! I was 38 years old at the time and had 4 children to try to >be a mother to at that time...ages six, eight, thirteen, and sixteen. My >husband was a teacher and respected member of the community where we >live. > >>From 1970 to 1997....I had been to every clinic I could find within a >250 mile radius from where I live...including the famous Mayo Clinic at >Rochester. I had been to the Mayo Clinic five times over the span of 27 >years....always feeling that I had not been heard!!! > >In 1980 at the Mayo Clinic I endured 4 different nerve blocks over a >span of 4 days....which were all unsuccessful. I completed at least >four Minnesota Multiphasic Personality Tests during those 27 >years...which was standard procedure at the Mayo Clinic. I was x-rayed >to death...and far too much blood was drawn...not only at the Mayo >Clinic but at all the various clinics and hospitals I had been to. No >doctor or surgeon believed me! > >I was continually told that that my chronic pain was functional in >origin...all tests were negative! Basically, all of the doctors and >surgeons, whom I had seen, were telling me that my chronic pain was NOT >REAL...that it was "all in my head"...implying that I was a >hypochondriac. > >I was told that perhaps a food allergy was responsible for my pain...so >I was put on various diets for food allergies. One doctor told me that >I had Fibromyalgia. Several times I was told that Irritable Bowel >Syndrome (IBS) was the reason for my chronic pain....even though I did >not have the classic IBS symptoms of alternating constipation and >diarrhea. These symptoms are just a partial list of the diagnoses, >which I had been given over that span of 27 years. > >Everytime when all of these doctors told me that everything was >norma...that there was nothing wrong....I felt humiliated! I felt >shamed! I felt defeated! My faith in doctors had been shattered! > >I felt sure that even my family and friends, who were trying to be >supportive to me, did not believe me. Do any of you know what it is >like to be continually told that there is nothing wrong with you? Even >my faith in myself was "wearing thin." > >So, Christine, to repeat what you said: >".....but why haven't you followed up on the return of the pain? Just >because it feels just like the pain you had before your had the lap in >1997 that confirmed it was adhesions, does not mean it is necessarily >the same thing!" > >I know that what I have written today does not touch on the diagnostic >laparoscopy which I had in 1997...but perhaps it is helpful to know >something about my previous experience with doctors and the many >incorrect diagnoses they had given me in previous years....in order to >put everything into context. > >Christine, I am glad that you responded to "Adhesions? Let me tell you >about mine..." Your response will help me as I continue to make sense of >my personal saga with post-surgical adhesions. > >I have much more to add to what I have already written today...but my >message here has gotten to be far too long...so I will simply say: > > **TO BE CONTINUED** Hi Helen: You don't have to tell me what it feels like to get the medical runaround! I have been there! Not with the adhesion problems but other problems in the past, including one I went to the Leahy Clinic for (the east coast equivalent of the Mayo Clinic) I really do understand your frustration that you experienced. With a surgical history it is hard to understand why no one thought of adhesions. In my own case, I find it hard to understand why I was given imipramine for four years (by a neurologist) for something (leg pain) that turned out to be easily treated with Lupron. The fact that endo could be causing this pain was never addressed by the neurologist. After ruling out serious neurological disease, he was treating me for a chronic virus. In fairness to him, I had apparently suffered from a persistent virus (one of my runarounds) at one time. I still think he should have ruled out anything gynecological, since pelvic problems can cause leg pain. However, what you experienced then has nothing to do with what you are experiencing now.(same for me) If you let your anger at the medical profession rule, you could be in for a nasty surprise, hopefully not. It may be that you have followed up on the return of the pain but from your posts it sounds as if you have not. I kind of got the impression that you are waiting for the gel to get FDA approval before proceeding. My opinion on that is that is not a wise thing to do. I do not plan to let them dismiss chronic lower abdominal pain as my adhesion problem, when disorders such as colon cancer and ovarian cancer often present themselves the same way. Just because it feels like the adhesions does not mean it is the adhesions. It is my understanding that pelvic pain can be fairly nonspecific. This is all I meant by my question. If you have followed up on the return of the pain, I'm sorry. I was serious when I said I felt lucky that my doctors have taken my adhesion problem seriously. As I said, I have never gotten the impression that they doubted that was my problem, after the other tests etc. (colonoscopy etc) came back negative. Adhesions weren't the first thing they suggested, but they did seriously consider them. They were also very clear about how dfficult it can be to treat adhesions. Chris S.
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