Questions and Answers are provided as a service to the many people who are in pain and desperately searching for someone who will listen and who understands. Following are some frequently asked questions. Questions and Answers are provided as a service, not for medical advice. Information provided in this section is based on our own personal experience, as well as those of other sufferers. Please consult a physician for any needed medical advice.
Q: How do I know if I may have adhesions? A: People who suffer from adhesions often complain of abdominal pain, nausea, vomiting, gagging, bloating, tender stomach, complete bowel obstructions, back pain, internal pulling, ripping, stabbing or tearing sensation, pain upon movement, difficulty standing in an upright position, migraines, fatigue (often severe), constipation, intermittent diarrhea with constipation, hunger yet an inability to stomach food, difficulty breathing, difficulty climbing stairs (pain may worsen), infertility, pain with sexual intercourse. *Please note: this is only a partial list of symptoms, other symptoms may also be present.
Q: Why doesn't my doctor believe me when I say I am in pain? A: A common thread seems to run through the adhesions world, binding all sufferers together in complete frustration: doctors who simply do not believe the sufferer. #1. Because adhesions elude the eye of standard medical tests such as x-rays, CT scans, etc., and are not detected via lab work, many physicians who rely on these tests quickly toss the suffering person in the IBS (irritable bowel syndrome) bin, or assume the person is "depressed"- (all complaint of symptoms are quickly determined to be psychosomatic). #2. Surgery is the number one cause of adhesions. Many physicians may suspect adhesions, yet may not be politically motivated to share that suspicion with the sufferer. #3. Some physicians boldly proclaim adhesions do not cause pain, thus his or her mind is closed to the subject.
Q: I had surgery (hernia repair, appendectomy, c-section, etc.) and now I have "new" pain, yet my doctor says it is nothing. Is this the pain of adhesions? A: Many people may return to his or her doctor post surgery with valid complaints of pain, only to find the doctor off-putting. Your doctor may suggest you have typical heartburn, or the all-time-reliable: IBS. Your doctor may send you out for tests, only to phone you later with the "nothing wrong" results. And, he or she may be right-there is nothing wrong. However, he or she may be wrong. 93% of patients who undergo major abdominal or pelvic surgery will develop adhesions, with 53% from that group developing problematic symptoms due to adhesion formation. The only method by which adhesions can be identified is diagnostic laparoscopy.
Q: Do you know an adhesion doctor in New York? New Jersey? Oklahoma? Texas? Colorado? Oregon? Canada? Louisiana? etc., etc., etc. A: Adhesiolysis, the taking down of adhesions, is a painstaking, time-consuming, tedious, and risky surgical procedure. This is an area of medicine that calls for an expert physician who is well-versed in adhesiolysis. Hindsight is 20-20, and we all usually learn this the hard way. It is unfortunate to learn you needed an expert after suffering through the attempt(s) of a surgeon(s) who did not have the skill or the product(s) to complete a successful surgery.
Q: I want to know: how many times has your daughter gone to Germany for surgery? A: One time. Melissa and I went to Germany in April, 2003. She has now been well 10 years! :-)
Q: Are you paid for your advocacy work? What is your motivation? A: No. I receive no compensation from anyone for the work I do to promote ARD awareness. My daughter was ill fourteen years. From age 13 until age 27. It was an injustice that should not happen to anyone. Our family suffered right alongside Melissa. We all wanted to take her pain away. We never gave up faith, always believing God had an answer. Of course, when we pray, we all want the answer within the hour, or at least by the next day. But, as the scripture says, "When you have done all to stand...Stand!" (Ephesians 6:13, 14). Anyone who has ever wrestled with God can understand the bargaining prayer. I did a lot of bargaining. Each day I made a vow to God that I intended to keep: if you will show me what is wrong with my baby and show us how to get her back to health, I will tell the world. This is my motivation. The joy at witnessing my daughter able to rise from a bed of crippling illness and able to live her life again was such a gripping moment in time; there are no words to describe. From that very moment, I wanted everyone in the world to know there is an illness called ADHESIONS. No one should be left to suffer horrid pain, be misdiagnosed, and treated for an illness that is incorrect. No parent should have to endure the taunts from doctors' when he or she is simply fighting to find an answer for a child who suffers. No siblings, no family, should be forced to stand by helplessly, years upon years, as a loved one suffers in horrid pain, while doctors' dismiss, accuse, and belittle the sufferer and parent. Finally, no physician should conceal information about an illness, even when the physician himself may be responsible for that illness. Every ill person deserves a proper diagnosis, as this is the only way the ill can path a course of action. Simply put: my passion is that no other person lose precious years of life due to the medical silence that surrounds this debilitating illness.
Q: I have had six surgeries for adhesions and am preparing for a seventh in October. I was told I shouldn't keep having surgery, but this is how I get relief from the pain! I don't understand. A: Since surgery is the number one cause of adhesions, repeat surgeries to take down adhesions can lead to a condition known as frozen abdomen. Sadly, many people only learn of this condition when they go back for another surgery only to have the doctor inform them that he is dismissing them as a patient. Yes, simple as that. He refuses to touch them again due to the dense, concrete-like adhesions. *Surgery for adhesions without a proper barrier is useless.
Q: Why did you take your daughter to Europe for adhesions surgery? A: In 2002, a US doctor agreed to perform laparoscopy surgery, as Melissa and I had decided her problem must be endometriosis. Based on her symptoms, this doctor agreed with our suspicions. That surgery, however, proved us all wrong. The surgeon found her organs fused together by dense, thick adhesions. (Images from this surgery are in the book). She became worse after that surgery. Months later, Melissa underwent surgery with another US surgeon. Again, the surgery failed. Heeding the previous advice from yet another US surgeon, I began looking for a surgeon in Europe. After researching the benefits of SprayGel (now SprayShield) and a concept of gasless laparoscopy, my husband and I decided this was the best option. After informing Melissa of our findings, we were soon on our way to Europe. *Note: We are very thankful to Dr. John Dulemba for being open and honest concerning adhesions surgery in the USA sorely lagging behind Europe. He put our daughter's best interest first. For that, we are very grateful.
Q: I had an appendectomy several years ago. Since that surgery, I have a lot of pain with movement. It is like something is pulling inside. I also have nausea, bloating, and constipation. Recently, I had a bowel obstruction and had to be hospitalized. My doctor refuses to acknowledge my misery and tells me only to eat a soft diet! I asked him if I might have adhesions. His reply? "Adhesions are a natural occurrence after surgery and do not cause problems. You could have a hereditary problem with digestive issues." Strange! I had no "digestive issues" prior to surgery! My life is limited because of this ongoing problem. My husband is no help at all, as he believes anything the doctor says! Do you think I have adhesions? A: Perhaps the greatest insult to people who suffer from adhesions is the lack of help from the medical community. Doctor after doctor will refuse to mention adhesions as a probable cause of ongoing pain and symptoms. When a patient asks if adhesions could be the problem, many physicians are taken aback simply because they do not know how to answer a patient who is aware this medical complication can arise after a surgical procedure. While a physician can quickly attempt to dismiss your question with a "natural occurrence" reply, these are the facts: While this "natural occurrence" will not cause pain in some people, others are completely debilitated by adhesions that begin to fuse internal organs together. The statistics tell the true story: 93% of patients who undergo major abdominal or pelvic surgery will develop adhesions. 53% from this group will develop pain and problems that warrant the need for medical intervention. Postoperative adhesions account for 64-79% of hospital admissions due to small bowel obstruction. You can read more HERE. Statistics show the average adhesion sufferer will search 7-10 years for an answer to pain.
Q: Can adhesions cause death? A: Unfortunately, adhesions most definitely can cause death, though we rarely hear about death due to adhesions. It stands to reason that an illness that is not even acknowledged by the medical profession at large is rarely being recorded as a cause of death. Undoubtedly, adhesions are largely responsible in cases of death due to bowel obstruction, though bowel obstruction is likely the recorded cause of death. In the case of frozen abdomen, one's life can be shortened since internal organs are not functioning properly due to being matted in concrete-like adhesions, yet again, I doubt we would find adhesions noted as cause of death. County singer, Tammy Wynette, was said to have died from "natural causes," while another story claims she died from a blood clot. In the book by Jimmy McDonough, he states that Tammy Wynette suffered from adhesions due to repeat surgeries, which only caused her to suffer more bowel obstructions. Tammy Wynette's story was one of continuing abdominal pain/abdominal surgery. Edith Rodriguez made headlines after she was ignored at the ER. Sadly, she died due to a perforated bowel. In Edith's case, we may ask if adhesions were responsible for the bowel perforation. However, perhaps a more apt inquiry would be why the cause of her death was noted as a bowel perforation when the actual cause of death was medical negligence? Certainly, language plays a huge role when we leave this world. More recently, ARD sufferer, Robin Leeling was publicly noted as passing away due to adhesion related disorder. Perhaps this notation came about as the result of her own effort to promote awareness of this debilitating disorder. More onRobin.
Q: How do you make doctors listen?! Shortly after giving birth to my now 2- year old daughter via emergency c-section, I became crippled with upper abdominal pain, sometimes cramp-like and other times a tearing, stabbing pain. I know that I'm going to die if this doesn't get taken care of. I can't even find a doctor willing to listen, much less perform surgery. It sickens me to go to work each day, not just due to pain, but because I work in the medical profession! My question to you is my first comment, how do you make doctors listen? How do you make them care? To them if CT's can't give a definitive diagnosis, the sufferer must be a depressed, anxious, stupid mess! What words can I say? A. This is why ARD awareness is vital. The inquiry comes from a woman who works in the medical field, yet even her complaint of pain has fallen on deaf ears. Though the writer must believe she has adhesions, she will need diagnostic laparoscopy to confirm her theory. When CT scans, x-rays, lab work, etc. (standard tests) provide no answers, the sufferer should not be dismissed as "depressed, anxious, a stupid mess," however, as the writer speaks for all sufferers, this is exactly what happens. Those who suffer from adhesions are all too often ignored, dismissed, insulted, medicated, labeled a "problem patient," or one who is suffering "imagined pain." (Yes, it is all in your head.)
Because adhesions form in 93% of cases of major abdominal or pelvic surgery and most likely the surgeon did not discuss the risk of adhesions prior to surgery, there is a reluctance from the medical profession to acknowledge debilitating pain that occurs after a surgical procedure. When standard tests provide no answers, the doctor has two options: consider (and suggest) the pain may be caused by adhesions or ignore the patient's suffering. Sadly, most physicians choose the latter.
1. Liability. To acknowledge pain and suffering has resulted from the surgical procedure itself can be likened to a person who stops running so a charging dog can bite. Most people would rather attempt to out run a charging dog than to simply offer up a leg. Likewise, what physician will offer up his own leg to a patient who may bite?
2. A medically agreed gag order? Adhesions were first recognized in 1872 as a problem resulting from surgery. After that time, medical literature recorded numerous cases involving adhesions as a result of surgery. Today, adhesions are said to be a widely discussed subject among physicians, however, it is one that is rarely broached physician to patient. (Statistics show the average sufferer will search 7-10 years for an correct answer to debilitating pain).
3. No answer for the illness. Let's say the physician should decide to acknowledge your pain might actually be caused by adhesions; then what? In the USA and many other countries, the physician is all too aware of the problems/challenges that surround this condition. Adhesions that affect the bowel and/or other major organs would be a high-risk surgical procedure for the patient, as well as the surgeon. In addition, the surgical procedure is time-consuming, tedious, and requires a surgeon who is well versed in dealing with this challenging dilemma. Further still, the surgeon must have an adequate barrier to place between the separated tissues to prevent adherence of the tissues once again! Finally, the surgeon who takes on an adhesions sufferer without all these factors lined up in his corner is a surgeon who has just taken on a patient who will soon be back complaining of the same pain all over again.
Hindsight is 20-20. I now know my own daughter suffered fourteen-long-excruciatingly-painful-years because of some--if not all--of the aforementioned reasons. It is much easier to dismiss a patient than say: "You probably have adhesions."
The patient must be her own best advocate. This means searching for a doctor who not only acknowledges adhesions, but also acknowledges adhesions may be the culprit behind unexplained pain. The patient who suffers pain and has made all the medical test runs--only to be told nothing has been found--must be direct with the doctor and explain that she believes she has developed adhesions. The doctor should also be one who will agree to perform diagnostic laparoscopy to confirm or rule out adhesions. (To continue to go in and out of countless doctor's offices with the hope that you will be lucky enough to find a doctor who will listen is not only costly and extremely frustrating, it is an effort in futility). In addition, sufferers should be aware that some insurance companies do not want to pay for diagnostic laparoscopy. Some insurance companies may refuse to pay for adhesiolysis. A person who suspects adhesions should call their insurance company to learn if the procedures are covered. If so, the insurance company may assist you in finding a doctor to help.
Further, keep in mind: when and if adhesions are found, the surgeon must be an expert in adhesiolysis and have the proper products available to ensure a positive outcome--this means an adequate barrier that will prevent the tissues from adhering once again after surgery, as has already been mentioned above.
Q: I have had one surgery for adhesion removal. It lasted for seven hours. I have pictures. Adhesions have attacked my colon, liver, intestines, and yanked my bladder through my pelvis and attached my bladder to my pelvis bone on the otherside. Three years later, I am hurting again. My regular doctor, not my surgeon, is treating me with high doses of Gabapentin. After all, surgery is what caused these. My question is: has anyone else used this medicine and does it work? A: You might address the question of usage at this forum: ARD When you ask if this medicine works, Gabapentin, it appears the medication is designed to treat pain. While most pain medications will help reduce some discomfort caused by adhesions, surgery is the only method to remove adhesions that have encased internal organs.
Unfortunately, the failure rate for adhesiolysis seems to be more common than the rate of success. Speaking from our own experience, my daughter had two failed surgeries in the USA. (Failed meaning her pain was the same-perhaps worse-after the first surgery, and pain definitely increased after the second surgery.) After making a trip to Germany in 2003 to seek the help of Dr. Kruschinski, my daughter was finally freed from her painful-debilitating-condition. Dr. Kruschinski is adamant that CO2, which is commonly used in surgery to create the necessary viewing field for the surgeon, is a major co-factor in adhesion formation, thus he performs gasless laparoscopy. In addition, Dr. Kruschinski believes in scissor adhesiolysis-not laser-followed with the barrier SprayShield, and in some cases a combination of Adept and SprayShield. Lastly, and perhaps most importantly, Dr. Kruschinski is thorough. Seven days after the initial surgery, he performs a second-look. If any new adhesions have started to grow, they are easily swept down and SprayShield applied.
Q: The biggest cause for adhesions is previous surgical procedures. I just underwent a laparascopy to see if I had endometriosis, and adhesions were found instead. I have never had surgery before. Any other thoughts on what caused this? I am going on 10 months of severe chronic pelvic pain.. A: While surgery is the number one cause of adhesions, inflammation, infection, an injury, even radiation therapy can also cause adhesions. In my daughter's case, she too had never had surgery. Though we will never know for sure, her adhesions may have come about as a consequence of ovarian cysts. More information can be found here: Adhesions
Q: I had surgery for endometriosis. My surgeon said it took a long time to separate the adhesions, which caused my surgery to be much longer than anticipated. He said adhesions are part of healing and not to be concerned with them, as they are more of a problem for the surgeon than for the patient. Since that surgery, I have had more pelvic and abdominal pain than I had before. In addition, I have this huge belly that is tender to the touch. I am also dealing with nausea! This was not happening prior to surgery! I went back to my doctor and he said endometriosis can cause these issues. I pressed about adhesions, but he said adhesions are hardly ever the cause of pain and nausea. I have been reading your blog and what I read is contrary to what my doctor is telling me. Honestly, I am scared. I think I am dealing with issues from adhesions! Can you shed some light? I know you are not a doctor, but I would still like your opinion. A: What you describe most certainly points to adhesions. Surgery is the number on cause of adhesions, so number one, you had surgery. Secondly, separating adhesions without the use of a barrier to prevent reformation of adhesions is like pulling a weed and leaving the root. In most instances, the darn thing will be sprouting again by morning! Unfortunately, most barriers approved for use in the USA are inferior to the product being used with success in Europe (SprayShield). My opinion: it sounds as though your doctor prefers to steer you toward endometriosis and deny that new issues could be adhesion related. Sadly, this medical attitude is a very common one. Pain, bloating, nausea, tenderness....these are common terms used by ARD sufferers. Does that mean you have adhesions? I cannot answer that, but most women know their bodies; and what you are experiencing is different than what you experienced before surgery. Now, you may be wondering if he removed adhesions, why weren't they causing you problems like this before? It is possible the adhesions removed were filmy ones, not really causing great problems. Now that surgery was performed, adhesions could be more dense than they were prior. You can join us at the facebook forum where many who suffer from adhesions (as well as endo) share their experiences: Click here: I'm Not Crazy After All!