Almost a year ago, I had a surgery that was supposed to fix all of my health problems, not create a whole set of new ones. My endometriosis symptoms had become severe and debilitating—I was on medical leave from work, wasn’t much help to my family, and couldn’t go out with friends. I searched out the best endometriosis specialist in Canada and scheduled laparoscopy excision surgery, a procedure where all of the endometriosis the surgeon can find is cut out. Although excision surgery is not a cure, it is one of the only endometriosis treatments that offers many women long-lasting relief from symptoms.
My excision surgery seemed, on the surface, to have been successful. My endometriosis had been extensive. It was found on the walls of my abdomen and pelvis, on my left ovary, on my large intestine, and on my left ureter. In addition, I had extensive adhesions (bands of scar tissue) that had bound those organs together and attached my intestines to my abdominal wall. My doctor had removed all the endometriosis, cut all the adhesions, and removed my left ovary and tube, which were badly damaged by adhesions and were unsalvageable. I cried when I heard the news, out of relief. My severe symptoms were explained, and the cause of them had been treated. My doctor had characterized my surgery as long, difficult, and complicated, but ultimately successful. I felt that once I healed I would have a very good chance of feeling much better.
If someone had told me that the next year would bring another surgery, several ER visits, several hospitalizations, a new diagnosis, and a new set of chronic problems that rivaled my old symptoms in severity, I might have questioned their sanity. I went home from my surgery sore, but very relieved that it was over with. I didn’t know that my battle with adhesions was just beginning.
Adhesions are scar tissue that forms inside the body in response to injury. Some adhesions are thick bands, and some are more diffuse and filmy. They can glue organs together and to the abdominal wall, which can interfere with the function of the organs that are affected, and cause pain. Many organs need to move in order to be able to function: for example, the intestines need to be able to move to push food through, and the ovaries and Fallopian tubes need to be able to move for the ovary to release an egg and have it move down the tubes into the uterus.
Surgery is a major cause of adhesion formation. One third of patients are readmitted to the hospital an average of 2 times in the 10 years following open abdominal or pelvic surgery, for conditions related to adhesions. The most common problems caused by adhesions are chronic abdominal or pelvic pain, small bowel obstruction (where the intestines are kinked or twisted, and are partially or completely blocked), female infertility, and inadvertent bowel injury in subsequent surgeries. Although minimally invasive laparoscopic surgical methods are superior to laparotomy (open surgery) for many reasons, laparoscopic surgery does not necessarily result in fewer adhesions.
Surgeons typically underestimate the incidence and complications caused by adhesions, and information about adhesions is provided in only 9 percent of surgical informed consent forms. Adhesions occur in 70 to 95 percent of patients undergoing gynecologic surgery, and post-surgical adhesions are cited as the primary cause of bowel obstruction. Adhesions are responsible for over one billion dollars annually in health-care costs in the U.S.
After my excision surgery, I had complications due to an undiagnosed bleeding disorder (see my story here) that resulted in another surgery 7 weeks after the first. Adhesions were once again found and cut during that surgery, but despite that, about 6 weeks after the second surgery I started to experience symptoms that eventually turned out to be adhesions again. The conundrum of adhesions is that surgery is both a treatment, and a cause. Multiple surgeries can increase the number of adhesions, although there are some surgical techniques that minimize adhesion formation to the extent possible. My problem with adhesions was likely exacerbated by my undiagnosed bleeding disorder, since meticulous control of bleeding during surgery is one important way to minimize adhesion formation.
By four months after the second surgery, my symptoms were once again greatly affecting my quality of life. I had severe pain in the left lower pelvic area that prevented me from doing many activities. I had severe lower abdominal pain and nausea after eating, even when eating only small meals of food that should have been easily digested. When my intestines would get partially blocked due to bowel obstruction, the pain was intense and I couldn’t eat without throwing up.
The pain I would get after eating would come on suddenly and intensely. It was waves of sharp, stabbing, knifelike pain that would leave me doubled over. I was afraid to eat while I was out of the house because sometimes I would end up on the bathroom floor, unable to move without throwing up due to the intensity of the pain. I started to hate food and avoided eating whenever I could.
My doctors (a general practitioner, an endometriosis specialist, a gastroenterologist, and a pain management doctor) all agreed that I likely had a problem with adhesions, but they all also agreed that little could be done about it. Unanimously they said that although I might get better with another surgery to cut the adhesions, I might also get worse. I was offered the typical array of medications, including antispasmodics to decrease the intestinal pain I had, antidepressants, which can sometimes be helpful for visceral (organ) pain, and the fibromyalgia/anti-seizure drug Lyrica.
After doing some research, I decided that a specialized form of manual physical therapy that treats adhesions non-surgically (Clear Passage Physical Therapy) was probably my best hope. I travelled to Miami twice for treatment with an amazingly compassionate and skillful physical therapist. I was amazed on my first trip to notice a big difference in my symptoms fairly quickly—on my second day I was able to walk up a small hill and a set of stairs without any pain, something that hadn’t been possible since the problems with adhesions had started. I also started being able to eat a little more normally. By the end of the second trip, my symptoms had improved very significantly.
I still have to watch what I eat quite carefully, and even as I write this I am recovering from another partial bowel obstruction. I don’t think my intestines will ever be the same as they were before my surgeries; they may always be affected to some extent by adhesions. However, I have to keep in mind that the gastrointestinal symptoms I had due to endometriosis on my large intestine prior to surgery were also very unpleasant and affected my quality of life. So fear of adhesions is not a reason to avoid surgery, but it is important to be aware of the potential for problems. I was lucky that my doctors recognized the problem as adhesions very quickly, since many doctors do not. And I was also fortunate to receive physical therapy treatment that finally, a year after my excision surgery, has allowed me to feel like I am really getting my life back.
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This article was published originally on Hormones Matter on July 22, 2013.
Wow! Powerful article. I felt like someone actually knew me and what I’m struggling with at present date. It was like reading my own story. I too suffer with adhesions and had to have surgery to remove and free up my organs in the lower right abdomen. I suffered daily and was provided no relief, my life and activities were limited. I am thankful that a general surgeon finally listened to my situation and past medical history. It’s been almost 6 months and my symptoms have returned. I’m almost at tears on a daily basis not willing to have surgery again. Just coming to grips with this and hopefully able to live my life the best way possible. It’s nice to know that I’m not alone struggling with this issue.
I’m looking for Endo Specialist and physical therapist located in miami. Philippa – do you mind sharing? Thank you in advance
I don’t think there are any gynecologists trained in excision surgery in the Miami area. The best place to get information about good endo specialists is in Nancy’s Nook on Facebook: https://www.facebook.com/groups/418136991574617/. You have to apply to join, and it is a great source of information. In Miami, I would highly recommend Leslie Wakefield for physical therapy: http://www.wellspringshealth.net/
As a Director at Clear Passage, I’d like to respond to some of the questions above:
1) Adhesions form as the first step in healing; they can form anywhere in the body. Once the body has healed, the adhesions remain. Adhesions can be tiny (even microscopic) but are powerful – like the strands of a nylon rope. The body doesn’t have a way to get rid of them on its own. Acting like internal straight-jackets, adhesions can squeeze organs or nerves, causing pain or dysfunction.
2) Surgery is a major cause of adhesions formation. No matter how skilled your surgeon, s/he cannot stop adhesions from forming. They form as a natural response whenever the body heals. Post-surgical adhesion formation is a major problem in medicine.
3) Adhesion formation is a natural process; they can reoccur wherever tissue is re-traumatized or becomes inflamed – again, as the first step in healing.
4) A major part of what Clear Passage does is to decrease or eliminate adhesions.
5) Another important part we do is to teach patients how to maintain, or increase the gains we gave them, with a home program we developed to address any new adhesions that might form, later in life (after therapy).
6) In addition to the Diet Guide for People with Recurring Bowel Obstructions, there is a significant amount of free information and educational material (published studies, scientific data, testimonials, etc.) at the Clear Passage website: http://www.clearpassage.com
7) We screen every applicant for therapy to determine whether
a) you might be an appropriate candidate for the therapy (no contraindications), and
b) we might be able to help you – or not
8) There is presently no charge for this consultation
I hope this helps answer some of the questions above. We wish the best of health to you all.
Has anyone considered serrapeptase and nattokinase? They are enzymes that eat fibrin, the stuff that scars are made of. Serrapeptase was originally discovered in silk moths who used it to dissolve their cocoons; you can buy it on Amazon. I’m taking it for uterine scars, but I don’t have results yet about it’s efficacy myself, but there are quite a few successful accounts online, particularly for endometriosis. If you take it remember to abstain from food 2 hours before and 1/2 hour after taking, as the enzymes will eat food (they eat ‘dead tissue’ while leaving healthy tissue alone–so if taken with meals, they will help you digest rather than consume scars.)
Have you had any success with this? I’m about to start this protocol.
I have had pelvic pain symptoms for 1 year and like you I’m at the point of thinking that diagnostic laparoscopy and possible excision of endo (if found) is my solution to get my normal life back, however, I am strongly comparing the risks vs. benefits. I am in discomfort now (daily) and it interferes with my relationship but I don’t want to cause more. It seems like there are no guarantees. If you could go back in time would you have gone with the surgery? I am 33 with no kids but we do want them very soon, so I also worry that this surgery and adhesions could impact my fertility. However, if I do have endo I could already have adhesions correct?
I am in the same boat as you all; however I suffer from bloating and gas from adhesion. I just sleep either. I massage it everyday just to get food moving. I contacted Clear Passage but they are so expensive for treatment and it’s not even a guaranteed. Why can’t there be other therapist to do the same treatment without a high cost.
Unfortunately the options for treating adhesions are very limited. As far as I know, the only choices are to manage the symptoms using medications (that didn’t work for me at all), have surgery to cut the adhesions (with a significant risk of them reforming), or do something like Clear Passage.
I’d be curious to hear if you are still having success from your treatment with Clear Passage. They treated me and although it helped considerably, I regressed and the symptoms returned. I now have weekly physical therapy with a local therapist (who specializes in women’s pelvic issues and pelvic floor) and I’m improving considerably. It’s a long process, but I am having quite a bit of success. The problem with CP is that it’s not always a 100% cure 100% of the time. I had another bowel obstruction after therapy with CP. Now whenever I feel myself start to back up, my therapist can get things moving again and I don’t obstruct. CP was good at the time but it didn’t last. And the intensive therapy with them wears a lot of people out. I find “low and slow” to be a much better option for me. For those considering more surgery, don’t do it. It may buy you some relief but only for a short time, and it will get progressively worse with each surgery. I speak from experience.
Nothing is a 100% cure 100% of the time, unfortunately. It’s good that you have found a local therapist who can help you. For me, nothing ever got back to nearly as bad as I was before Clear Passage, but I did have some return of symptoms, and I have gone back for short rounds of maintenance therapy. They say that if you still have inflammation in your pelvis, you can continue getting adhesions. I have very severe endo, and my surgery only provided me with relief from dysmennorhea symptoms (which were severe, and the relief from that is nice, but I have a lot of other symptoms too). I suspect that there is a lot of endo in me that was never excised. For me though, the adhesions that I get from surgery are so much worse–I never want to have surgery again. I think that for people with ongoing inflammation, some sort of maintenance/continuing PT is helpful. I have tried with the best local PT available to me but I didn’t get results like I got from CP, so I decided to do the occasional short trip back to Florida.
You mentioned you are getting therapy. I have a similar issue as you.
Do you have a name or phone # to this clinic?
I know that physical therapy helped my son after his traffic accident. My wife and I found out quickly that the surgery to cut out the adhesions just created new ones! We went to Clear Passage (http://clearpassage.com) and got rid of them without using surgery.
If you go to the Clear Passage website (www.clearpassage.com), under resources, then educational ebooks, there is a “digestive health guide” that has a lot of details about diet that is helpful for small bowel obstruction patients. I used that diet myself. I’ve had more physical therapy since writing this article and I no longer have to eat a special diet. Small bowel obstructions are really miserable…I hope you can find something that helps.
I have had multiple bowel resections and therefore many adhesions. I become blocked freequently and end up in the hospital at least once a month, all they can do is give me pain relief, since it is too dangerous for surgery. I am very cautious with the food that I eat. I was sticking to diet of smoothies, soups and juicing. but I still ended up with painful obstructions. I have tried many types of diets. I was hoping you could tell me what you eat and dont eat. In the meantime I will definitely get into some physical therapy.
Yes, it did help a lot. You can see my follow up article on this site: http://www.hormonesmatter.com/endometriosis-adhesions-story-hope/. I would consider more surgery pretty carefully, as surgery itself may cause more adhesions.
It has been a few months after your post, did the physical therapy helped with the adhesions? I’ve got persistent pelvic pain after my csection and have seen 2 drs, who suggested that the pain is probably from adhesions and recommended me to go for a laproscope.