You asked for true accounts from us who suffer from adhesions. Adhesions are REAL! And the pain associated with them are also REAL! I hope that my story will help you on your journey and help others know that Endometriosis, as well as Adhesions, can cause real pain. We are not drug addicts, we just want relief and a permanent fix to our problems. How long will it be before the medical society takes a woman's pain as for real?!
This is a quote from http://www.endocenter.org "If 7 million men in the USA suffered unbearable pain with sex and exercise and were offered pregnancy, castration or hormones mimicking either as treatment, Endometriosis would be a national emergency to which we would transfer the defense budget to find a cure."
My Story: After the birth of my forth child in 2002, I was having excruciating pain in my abdomen. My OB/GYN did all sorts of tests: CAT/ sonogram/ blood work several urine and blood tests and several rounds of strong antibiotics before telling me that "pain is relative" and prescribed an antidepressant! Needless to say, we went for another opinion. The 2nd doctor said that it was possible that I may have endometriosis, but highly doubts it because I ve had children. He did a diagnostic lap and it reveled severe stage IV endometriosis with adhesions. He "said" a total, radical hysterectomy will cure" me. So I had an abdominal hysterectomy in 2003 with EVERYTHING removed-cervix, ovaries, tubes, uterus and my appendix "just in case". They did not remove ANY endometriosis or adhesions unless it was to cut out the organs they were removing.
Well, after a horrible 6 month recovery, my pain was back-with a vengeance! I went back to the surgeon and he said it was IMPOSSIBLE that I had endo because a hysterectomy is supposed to cure it. By this time I had done some research, so when he suggested Lupron and an antidepressant, I knew he didn t know what he was talking about. On to third doctor.
This time, I had done my homework, borrowed money from my family because he wasn't covered on our insurance and found Dr. Albee at the Center for Endometriosis Care(CEC) who actually believed my pain was real. I had laparoscopic surgery done by him in 2005 where he found Stage IV endometriosis and adhesions on my bowels, bladder, pelvic wall, culdesac and actually invading one of my ureters. He carefully excised every single bit of it, floated organs in saline and used an adhesion barrier. Here is an article written my Dr.Sinervo- Dr. Albee's associate about adhesions:
Adhesions: An Update By Ken Sinervo, MD "Since the previous newsletter on Adhesions, there have been many promising products to reach the market, with mixed results. While many of our ideas regarding adhesion formation remain unchanged, we are continuously examining other new ancillary therapies to help reduce the incidence of adhesions.
The incidence of adhesion formation depends on many factors. Patients with advanced stages of endometriosis (stage III and IV) often have a significant amount of adhesions prior to any surgery because endometriosis itself can cause adhesions to form. The amount of raw peritoneal surfaces left following excision surgery may help us anticipate the likelihood of adhesion formation. The use of adhesion barriers often helps to reduce this risk.
Prevention There remains no substitute for excellent surgical technique. Adhesions can be separated sharply or bluntly, however, an approach that minimizes tissue injury and excessive use of cautery is preferable. This includes minimizing injury to tissues through the careful use of atraumatic instruments that do not crush tissue or leave denuded surfaces. Preventing blood loss is important as intra-abdominal blood can increase the chances of adhesion formation, When bleeding cannot be prevented, bipolar cautery is used to control it. Copious irrigation helps to remove any remaining intra-abdominal blood. Finally, the judicious of carefully selected sutures may help prevent foreign body reactions.
Products A number of products have been used to help minimize the formation of adhesions. Barrier agents include non-absorbable barriers, absorbable barriers and fluids. These agents prevent adhesions by physically separating damaged tissues during peritoneal healing, the time during which adhesions form. This healing period is usually considered to be a few days to a few weeks.
Non-Absorbable Barriers Non-absorbable agents include GoreTex and Shelhigh No-React. These agents were initially used during heart surgery. They must be sutured into place, and because they do not dissolve, must theoretically be removed at a later date to prevent fistula formation. The need for a second surgery has limited their widespread use in gyn surgery.
Absorbable Barriers Absorbable barriers include Interceed and Seprafilm. Interceed in derived from oxidized regenerated cellulose. It is a mesh that is draped over injured tissue and does not require suturing. Within eight hours, it forms a gelatinous protective layer that is absorbed within two weeks. There are numerous studies that have demonstrated a reduction in adhesion formation when Interceed has been used. In general, a 50% reduction in the incidence of adhesions occurs with the use of Interceed. One potential disadvantage of Interceed is the requirement of complete hemostasis. If bleeding is not completely stopped, this may increase the risk of adhesions.
Seprafilm is a bio-absorbable membrane derived from sodium hyaluronate and carboxymethylcellulose. Within 24 hours of placement, the film becomes a hydrated gel that is absorbed by the body within seven days. It has been shown to reduce the incidence of adhesions during gynecological and bowel surgery. These studies have been limited to laparotomy and the stiff nature of Seprafilm likely prevents its use during laparoscopy.
Fluids Absorbable fluid adjuvants have many advantages to barrier agents such as Interceed and Seprafilm because they coat all surfaces, whereas barrier agents are placed over areas considered to be most likely to form adhesions. Intergel, an 0.5% form of ferric-coated hyaluronic acid (hyaluronic acid is a component of body tissues and fluids such as peritoneal fluid), was shown in a number of studies to reduce the risk of adhesion formation by 40 - 50%. Unfortunately, Intergel was withdrawn from the market following reports of adverse reactions including post-operative pain, possible foreign-body reaction and adhesion formation.
Spraygel is a new product that is currently in clinical trials in the United States. Two polyethylene glycol (PEG)-based liquids are mixed during spraying and form an adherent absorbable hydrogel. It adheres to the tissues that it is sprayed to and remains intact for 5-7 days, the critical period of healing, and then degrades into an absorbable and easily excreted by-product. The frequency and amount of adhesions were decreased in initial studies by about 70%. Spraygel will likely not be available in America for a few years.
Conclusion In conclusion, the use of barrier agents likely helps to decrease the incidence of adhesion formation. When used in conjunction with excellent surgical technique, meticulous hemostasis and careful tissue handling, the risk of adhesion formation is reduced, but not completely eliminated. In our experience, the risk of adhesions resulting in a need for a subsequent surgery is approximately 10-15%. Repeat surgery for adhesions in these cases is usually less extensive and does not usually involve the same amount of dissection that led to their formation in the first place, namely, moderate or severe endometriosis."
Anyway, I had so much relief for a long while but issues from the unnecessary hysterectomy crept up. My organs were starting to prolapse because there was nothing inside to hold them up anymore. Also, because of the opened abdomenal surgery and because of the Stage IV endometriosis, there was a very high chance of more adhesions. So, I found a laparoscopic uro/gynocologist that specialized in prolapse who worked with my Endometriosis specialist in 2008 to snip apart any adhessions (which they found) and look for any other endo. They did everything laparoscopically , floated pelvic area and organs with saline and used Interceed to help prevent more adhessions from forming. I'm praying and keeping my fingers crossed. And Alie, you are in my heart and prayers.
Much Grace and Healing to You, Christi McDonald