Kathy: Hi Everyone, Well I guess it is time to ask some questions. Chrissie has been after to me to do this for a long time. Helen D.'s post on Ectoptic pregancies really hit home so here I go.
I had an ectoptic preg. in 1987 that was rupturing by the time I got to the hospital. My right tube was removed as a result. I then was lucky enough to have my daughter in 1990.
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My comments: You said you "had an ectopic pregnancy in 1987 that was rupturing by the time you got to the hospital." It is a well-known fact (at least by adhesion specialists - and by many, who have posted messages on the IAS Message Board) that ANY BLOOD (EVEN minute particles of blood) left in the abdominal/pelvic cavity can and will cause adhesions. Next you said: "My right tube was removed as a result." ANY SURGERY WILL cause adhesions; because our body heals itself naturally in this way. Chrissie knows all about this; because she had two of the best adhesion specialists in the world perform her surgery. She was okay for awhile BUT then her adhesion pain returned. I am sure that Chrissie knew - before her surgery at Scranton, PA - that even the best surgeons in the world cannot guarantee that adhesions will NOT reform or that de novo (new) adhesions will NOT form. But the adhesion specialists at Scranton, PA were able to give her the *best chance* for being as adhesion-free as possible.
I went to Germany in November 2000 to have my adhesiolysis by Dr. Korell, a laparoscopic surgeon who is also known to be among the best in the world; but within 7 days after my second-look laparoscopy, my pain returned!! I have no regrets about this happening because I was aware of the fact that there is NO surgeon who can guarantee that their patient will be adhesion-free. My surgery in Germany was LESS costly than it is in the United States; and I plan to return to Germany - possibly in November - to give surgery another try. This time I will definitely request that an adhesion barrier (Intergel or SprayGel) be used - because a barrier was not used in my November 2000 surgery. If anyone is interested in going to Germany to have surgery at the same time as I will, please email me. Going to Germany as a group (3-4 people) for surgery can make traveling to Germany for surgery more interesting and fun. NOW is the time to make plans such as this; because it can take about a month or more to get the necessary passport.
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Kathy: Then another ectoptic on 1992. They used metholtrexate to remove the pregnancy without surgery; but since it was a fairly new option - when my hormone count didn't stop increasing - they had to do surgery on my left side. That was successful and my tube was saved. Again, another blessing in 1995, my son was born.
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My comments: What di you mean when you said: "...my hormone count didn't stop increasing." Have you ever been diagnosed with endometriosis? For what reason did they have to do surgery on your left side? Have you requested your surgical and pathological reports from these surgeries? You may discover, like others have, that your surgeons did not tell you everything about the results of these surgeries. I did!! And this has happened to other people, who post messages here!!
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Kathy: I have had pain in my right lower abdomen that goes down my right leg to my toes since 1990. At times it is almost crippling. The pain seems to run with my cycle. Now I have alot of lower back pain 3 out of 4 wks every month and the leg pain is much worse.
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My comments: Were you experiencing any problems with pain after your ectopic pregnancy - from 1987 to 1990? To help you understand how adhesions cause pain, when adhesions attach organs - that are meant to move freely - to organs (the peritoneum is an organ) that are stationary, adhesions will cause a "pulling" on the affected organs...pulling will cause inflammation and this results in pain. Abdominal/pelvic organs have nerve endings - including the peritoneum. When adhesions are attached to organs with nerves, this could possibly affect nerves that go to a person's legs and even to a person's back.
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Kathy: The doctor says that the area of pain appears to be too low to be gynecological. I had an xray and my spine,etc is fine. Big surpirise there! Have tried Viox, Motrin, Naproxon and quite a few other over the counter meds. Nothing works.
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My comments: You said: "The doctor says that the area of pain appears to be too low to be gynecological." If adhesions are affecting nerve endings in your pelvic cavity, this IS a gynecological problem!! Have any of your doctors ever mentioned adhesions to you? Unfortunately, there are far too many doctors and surgeons, who do not believe that adhesions cause pain; and it wouldn't surprise me if your gynecologist may be one of them. Very few surgeons and doctors will even bother to discuss adhesions - as one of the risks of surgery -with their patients; because "an adhesion patient is their worst nightmare." Surgeons and doctors know that it is very difficult to help an adhesion patient; and this helps to explain why "adhesions are the best kept secret" by the medical community. If medical professionals do not mention adhesions, then they don't have to deal with them. As a result the patient is either told "it's all in your head" and then the patient is sent to a mental health professional - or they're told "You will have to live with it" - or the patient starts hopping from one doctor to another doctor - with the hope that a doctor or surgeon will believe them and try to help them. Over the counter meds are NOT adequate enough to help with pain caused by adhesions!
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Kathy: Had an ultrasound 3 mos ago & saw nothing. The doctor put me back on the pill to see if maybe things would improve. NO luck after 3 months so I am stopping them. (Chrissie is saying "told you so") I have an appt. with my OBGYN on 9/20. I guess I am going to ask for the laparoscopy.
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My comments: When all diagnostic tests are normal, adhesions may be the problem. Is this the same gynecologist, who performed your prior surgeries and delivered your children? Before you go to this appointment, I suggest that you learn as much as you can about adhesions - as well as "How to Choose a Surgeon." I think you will be able to find that article in the Archives (Scroll down to the bottom of the IAS Message Board webpage; enter that title in the Search box; click: Search adhesions.) If you can't find it, please email me direct.
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I know that after 11 yrs of pain I should want a solution but I am scared of the answer I might get. Any thoughts that you can pass on or questions that I should ask my doctor?
Thanks!!!! Kathy R
PS: Chrissie is well and unfortunately working again. I am keeping my eyes on her for all of you!