My response to Natalie's message....
From: Helen Dynda (email@example.com)
Mon Jun 19 17:09:22 2000
Dear Natalie, I have responded to your message to me within your letter:
Maybe my first Dr.'s lack of skill is one of the reasons why my pain is so bad, I found out AFTER my surgery to remove my left ovary due to cysts and endo, that my surgeon had NOT EVER done this procedure through a laparoscope previously to mine. He actually bragged to me post op, that my case was his first time using this equipment and about how excited he was with the result of my case! He led me to believe that he was experienced and NOT to worry. HA!
[ >>My Respone: Natalie, your experience with this doctor is very unfortunate; and is not the first one experienced by others, who post messages here on the International Adhesions Society (IAS) Message Board!! Too many of us, including myself, have accepted with "blind faith and trust" doctors/surgeons and their abilities - and as a result we have paid dearly!!!
In your message you did not say if your first doctor was an obgyn or an endometriosis specialist. There are too many obgyns who know very little about endometriosis - and yet they think that they know how "help treat" women, who come to them with endometriosis problems. Not so!! There are obgyns, who have taken the extra training necessary to become endometriosis specialists - and endometriosis is their focus...not delivering babies, etc.<< ]
I have had pain on my left side since 2 months post op! As time has passed the pain has gotten worse. I switched Dr.'s due to inappropriate bedside manner and being told that pelvic pain was part of being a woman and to just live with it.
[ >>My Response: Good for you!! A very wise decision on your part!! << ]
I decided to go to Stanford, and let Dr.'s who specialize in Endo take over. I was also suffering from pain on near the right ovary. I was put on Synarel and stayed on with fair to good results for one year without taking any estrogen.
[ >>My Response: Stanford University is highly respected medical center; but the best endometriosis specialists do not treat endometriosis with drugs such as Lupron or Snyarel. The best endometriosis specialists in the United States believe that excision therapy gives their endometriosis patient the best chance for long-term ( years of )relief! Endometriosis is still considered to be incurable.<< ]
The only trouble was that my bone density was deteriorating. As a result of other gyn findings, I soon had a complete hysterectomy done by a wonderful lady surgeon trained under Dr. Camran Nezhat at Stanford.
[ >>My Response: With the right doctor/surgeon from the very beginning, this could possibly have been avoided.<<]
I am mostly pain free on my right side but still have INTENSE pain on my left. The pain gets so bad that I cannot tolerate food because it feels like my bowel is tearing or pressing on something in the area of the pain.
[ >>My Response: I am not a medical specialist and do not profess to be a know-it-all; but my guess is that your bowel is attached possibly to your abdominal wall - or another part of your anatomy which is not meant to move freely ( like our intestines do ). "Tearing or pressing on something in the area of pain" are descriptive terms of adhesions and/or endometriosis. Endometriosis causes scar tissue (endometrial implants) much like adhesions - and it is this scar tissue which causes body organs to adhere or stick together.<< ]
I recently had a colonoscopy and also endoscopy to rule out any obstruction etc. My Dr. concluded that the pain was from abdominal adhesions and sent me back to my gyn. My gyn agreed and sent me back to my primary care and general surgeon, as she (the gyn)explained that she was afraid to do further surgery for fear of further injury.
[ >>My Response: I am not sure if these two tests will "completely rule out" an obstruction. Both adhesions and endometriosis are very difficult for a doctor to diagnose - because it is a known fact that a diagnostic laparoscopy is the ONLY WAY in which they can be diagnosed! In fact, did you know that when a doctor orders a diagnostic laparoscopy, that this may be all that he/she does - even if the patient has been diagnosed as having a surgical problem? Keep this in mind if a diagnostic laparoscopy is suggested to you. Ask questions - ask alot of questions!!<< ]
It was also brought to my attention that during my surgery there was a strong possibility that the bowel was nicked in that area and scar tissue there may be part of the problem. My primary care Dr. has now recommended me to have a CT scan to rule out any other possibilities. I am soon scheduled for this, and am still unable to eat other than liquids without being in a great amount of pain.
[ >>My Response: A nicked bowel can cause severe adhesion problems which are capable of causing the intestines to adhere together and to stationary parts of the abdominal/pelvic cavity. My husband developed a similar problem as a result of cancer surgery - not a nicked bowel - but his bowel developed a leak following the surgery in which the surgeon re-connected the segments of his bowel following removal of most of his colon. The result? He had to have emergency surgery; and as a result the contaminated material ( from the leak ) caused him to develop severe adhesions and pain everytime he needs to go to the bathroom...for the last 11 years!<< ]
My primary care Dr. said she felt that if my pain continues, I may need another surgery to remove the adhesions on the abdominal wall and bowel, but warned me that they would likely reoccur.
[ >>My Response: Your primary care Dr. is right - "they would likely reoccur"...UNLESS you seek a surgeon who specializes in doing surgeries for adhesions!!!!!!! You would make a BIG mistake to have just any surgeon do this for you!!<< ]
As far as abdominal surgery goes, I have had 5 laparoscopies, 2 c-sections, left oopherectomy and finally the complete hysterectomy. My pain symptoms include the tearing-ripping sensation on my left side as well as a feeling of stabbing pain when I eat solid foods. I have noticed the more active I am, the more I feel this tearing sensation.
[ >>My Response: As I mentioned in my message on the IAS Message Board, as a result of adhesions you have been the victim of too many unnecessary surgeries - which have also caused you to lose body parts. Since it is known that endometriosis and adhesions are your problems, your best chance for success is with a surgeon who is very skilled and very experienced in doing surgery for both endometriosis and adhesions.<< ]
The last suggestion from my Dr. was to have another lap to see if I really did have adhesions causing my troubles. At this point, I am really sick of going from Dr. to Dr, and not interested in more surgery.............I have also recently had a golf ball size lesion removed from my left breast.
[ >>My Response: I don't blame you for "not being interested in more surgery!!" I do not believe that it is in your best interests to follow your Dr.'s suggestion "to have another lap TO SEE IF I really did have adhesions causing my troubles." You apparently need more than "to see if you have adhesions." Both you and I are sure that adhesions are involved; because it is normal for adhesions to develop following a surgical procedure!! Adhesions are the way our body heals itself!! Adhesions start forming within hours of surgery. Not every ( about 90% )surgical patients develops chronic pain as a result of adhesions! You and I, plus all of the people who post messages on the IAS Message Board, just happen to be among about 10% of surgical patients who have developed chronic pain as a result of adhesions.<< ]
I just want to get healthy and get on with my life. My question to you is this: Isn't there any other way to diagnose adhesions<<NO<< ]...and could adhesions on the abdominal wall and bowel cause pain that goes all the way around my side to my back.<<YES<< ] Also could adhesions cause episodes of difficulty and mucus in bowel elimination?<<difficulty? Yes<< ] mucous?<<I really don't know<< ]
Living in pain is stressful and frustrating, I do not want to take pain meds...I need to be very alert in my job.
[ >>My Response: Management of pain, especially at a pain management center which treats the whole person, is the best that medical science offers for people who suffer from adhesions ....UNLESS you seek a surgeon who is very skilled, very experienced , very dedicated to trying to help patients with severe adhesion problems. These surgeons, who specialize in doing surgery for adhesions, will be able to give you your BEST CHANCE for success....but EVEN THEY cannot guarantee that they will be able to CURE every patient; because there are NO guarantees with surgery - for both endometriosis and adhesions. THE BEST SURGEON is a positive step in the right direction to doing whatever is necessary to become pain-free as well as adhesion/endometriosis-free.<< ]
I pray alot and my faith in Christ gets me through each day, but my pain is ongoing. Please let me know if you have any suggestions, and thank you for being there and for this site. Natalie