Sometimes the holiday season causes us to feel more reflective than usual. As I was on my way home from my work holiday party, I was struck by the difference between this year’s holiday party and last year’s. Last year I spent the party surreptitiously downing painkillers and trying to look happy. I was barely recovered from the two surgeries I’d had for endometriosis a few months prior, and the complications that ensued, and I was already starting to suffer from the problems that I would eventually realize were caused by adhesions as a result of the surgeries.
This year I spent the evening enjoying the party, socializing, eating and dancing, without any pain at all. It was actually the first time I’d been able to enjoy a holiday party in several years, because somehow every year my endometriosis always seemed to spoil the fun. It still feels a bit unusual to me to be without pain—it’s like being shoved from the middle of a noisy crowd into a soundproofed room—the absence of sound/pain becomes extremely noticeable. Although I’m not completely free of pain every day, or even most days, it’s remarkable to me that it can happen at all, after many years of daily pain to some degree.
They say it takes a village to raise a child, and I think the same is true for a patient with chronic disease: it takes a team of people, health professionals and support people, to help make the patient’s disease manageable. I have been helped by so many amazing people along my journey, and I am quite sure that I would not be at the point I am at today, if not for the help of all of them together.
For me, one of the first steps in getting better was laparoscopic excision surgery, to treat my endometriosis. In addition to being an extremely skilled surgeon, the doctor who did my excision surgery was truly an unusually dedicated and compassionate doctor. When I experienced surgical complications due to an undiagnosed bleeding disorder, he was at the hospital morning and night, and calling me to check in several times per day. After a fainting incident late one night, he was at the hospital 20 minutes later, at 11 pm. When a technician couldn’t take my blood within the time frame he wanted one weekend day, he came to the hospital to do it himself. He always had a reassuring smile and a hand on my shoulder, saying, “hang in there, you’ll get through this.” I’m not sure what would have happened if I’d been in the hands of someone less experienced and committed.
Although the excision surgery had provided me with a lot of relief from endometriosis pain, adhesions caused by that surgery, and a subsequent surgery to remove a hematoma caused by my bleeding disorder, began to cause as many problems, if not more, than I’d had before the surgeries. I had severe pain in my left lower pelvic area, severe pain and nausea after eating, left chest and rib pain, and eventually severe bladder pain. Simple, basic activities like walking and eating were too painful, and I was in the ER multiple times because of pain and gastrointestinal problems.
The problems with adhesions led me to seek treatment with a physical therapist who also ended up exceeding my expectations for her level of skill, commitment and caring. After being told by my doctors that the only treatment they could offer for my adhesions was more surgery, which might actually make the problems worse, I traveled to Miami for a specialized form of manual physical therapy that treats adhesions non-surgically (Clear Passage physical therapy). This treatment was very successful and reduced all my pain tremendously, restored my ability to eat, and reduced my constant nausea to merely occasional. I was very lucky that my physical therapist was extremely compassionate and sensitive, and through many hours of conversation during treatment she helped me make sense of the emotional consequences of so many years of pain. She also provided an invaluable self-treatment program that I continue to do at home to help maintain the benefits of treatment, and continues to be an ongoing long-distance resource when I have questions or problems.
Finally, the support of family and friends, coworkers, and online and in-person support groups is also invaluable to me as I continue to navigate through the journey of chronic illness. Everyone with chronic illness has felt those moments where they feel isolated and lose hope that things will get better. In those moments a shoulder to cry on, or a message that we are strong and can move forward despite obstacles, or even an offer to keep the faith for us when we can’t, are what keep us afloat.
My reflection on holiday parties past and present helped me realize how fortunate I have been to have a team of skilled and compassionate healthcare professionals, and caring support people, to help me through this difficult journey. To anyone reading this who also suffers from a chronic disease, I wish you the best in assembling your own team, and many happy holiday parties for the future.
Hi Alex, I had Dr. Leslie Wakefield in Miami. Her clinic is now in Hollywood, Florida. She is absolutely amazing. She has an article on this site about PT for endo. Hope it helps you as much as it did me!
Hi Philippa, I’ve been on the internet searching for answers for hours now and finally, thank you God, came across your article on your positive experience with Clear Passage physical therapy. I am going to call in the morning to try and schedule a consultation and appointment. I live close to Miami (a few hours), which is the location you said you visited. Do you recall the name of the therapist you had? Or have any recommendations as to who I could request? thank you for posting these articles. thank you!!!! God, Love + Light, Alex
Hi Chandra, I had Dr. Kay Lie but sadly he is not practicing any more. If you contact The Endometriosis Network Canada we can put you in touch with other excision docs. http://endometriosisnetwork.com/
Anne, I am sorry to hear of your problems. It is possible that another laparoscopy can help you, at least temporarily. But the problem is that surgery can sometimes cause more adhesions to form. I would get another medical opinion or two, definitely from the best surgeons you can find. And perhaps contact Clear Passage? They will give you a free 30 minute phone consult with one of their PTs. Since what they do is a little different than other PTs, you might be able to get additional relief from their therapy.
I found your articles to be helpful to what is going on with me. I don’t have endometriosis, but have been suffering from excruciating pelvic pain for over a year. Going from dr to dr, not getting answers, and finally found relief with a pelvic therapist. However since the beginning of the year, I seemed to stop making progress and have no good days. I just had a diagnostic laperoscopy and they told me the problem all along was that I was filled with scar tissue and adhesions. On my colon and my bladder sticking to colon . They said I need another surgery with a skilled general surgeon. My fear is that this wont take away the pain. The pain in right my groin area, so severe, sometimes like electrical shocks, sometimes burning like acid, always changing. Its like I am an invalid lately. Do you think the laperoscopy will help me? I am nervous as can be about the bleeding. I bled a lot from my hysterectomy (for fibroids) six years ago. I am so depressed.
You are brave and amazing!! Thanks for telling your story!
Can you please share the name of your skilled
Excision doctor?!? I am in Toronto and looking…
Thank you in advance 🙂