Let’s talk about “Managing Expectations”
by Susan Pierce-Richards, DNP, ARNP, ANP-BC, FNP-BC, June 2020 (updated)
The average time from symptom onset to diagnosis is 7-12 years. You cannot un-do this in a few hours of surgery. This does not mean individuals with endometriosis and pelvic pain cannot get well. They absolutely can but it is not like appendicitis where you have acute pain, surgery, surgical recovery and back to normal in a few weeks.
I hear from many individuals who become frustrated when 3, 6, 12 weeks or a few months post expert excision they are not completely symptom free.
Excision surgery is a crucial step – and the value of this step cannot be overstated. But it is the beginning. Remember – even perfectly prepared ground with perfectly healthy bulbs do not yield all of its blooms the first year.
Timeframe: Symptom onset to Pre-Op for Expert Excision
Individuals with endometriosis most often have pain for many years prior to undergoing expert excision.
– When we perceive pain, we often involuntarily contract muscles – with endometriosis it is often pelvic muscles.
– Over time these pelvic muscles stay tense and/or spasm, become weak and imbalanced, and can irritate nearby nerves.
– Individuals can develop pain from this muscle tension. They can develop bladder pain syndrome and hip/back/leg musculoskeletal pain.
– You can have changes in how your nervous system processes pain. Think 1+1+1 does not equal 3… it equals 10. This is particularly true when the symptoms interrupt sleep and other activities that would be restorative. Most individuals with endometriosis and pelvic pain have more than 1 source of peripheral and/or visceral nociceptive (generally interpreted as painful or unpleasant) signals.
Many individuals have anatomic distortion by the time they have excision surgery.
– Adhesions from endometriosis, adhesions from prior surgeries, endometriomas, deep fibrotic endometriosis, prior organ removal.
Many individuals have a reduced quality of life due to years of invalidation, poor sleep quality, infertility, relationship difficulties, and social isolation from the pain and bowel/bladder/gastrointestinal symptoms.
– Can result in depression and/or anxiety symptoms
– Maladaptive habits
– Relationships change – when we cannot contribute as much physically or emotionally in our chosen families, dynamics change in the relationships
My pre-op story:
– I was symptomatic from tweens. My periods were always horrible. I had pain with bowel movements
and in high school I would take Kaopectate so I would not move my bowels during my period. Sex was painful from the first time until I was 45 years old (post excision surgery). – By my 20’s I had pain throughout the month, pain with bowel movements regardless of time of month,
and pain with passing gas. I had a “small bladder” and urinated a lot with frequent night awakenings. – I had several years of infertility and was diagnosed with polycystic ovarian syndrome (PCOS).
Providers did not elicit the symptoms of endometriosis and did not explore signs of endometriosis (complex cysts, cul-de-sac nodularity). I did get pregnant and have a biological daughter who is now 16. I also have a 14-year-old son through adoption. I would live through every excruciating moment of my life to have these 2 children in my life. – I eventually sought care for persistent vaginal bleeding because I stopped reporting pain in my 20’s.
The repeated dismissal of symptoms silenced me. – At 44 I underwent a hysterectomy for bleeding daily x 3 years (slowed down by a Mirena IUD). Again, I
did not report pain because providers in the past did not address it. – I was diagnosed during a hysterectomy and had a fixed pelvis with extensive dense adhesions,
obliterated cul-de-sac, bilateral very large endometriomas, bowel endometriosis, and widespread peritoneal disease. My surgeon was unable to remove the endometriosis. – I then did a 6-month course of leuprolide (Lupron®) hoping for a reprieve from the pain. I did very poorly on leuprolide. I ultimately had upper gastrointestinal bleeding that expedited my need for a higher level of care. – Throughout this time I worked like a dog – and exercised. Though this sounds counter-intuitive,
exercise was my drug. I could not tolerate narcotics, and for few years before the surgeries I could not tolerate NSAIDs either, so distraction was my only tool. I withdrew from friends, family, and my husband. We did not have sex for 3 years before my excision surgery 16 months later. I never missed work and have a successful career. I always managed a smile in public. But I was a shell…
Timeframe: Getting ready for Expert Excision
Nervousness. Hopefulness. Excitement. There is a lot of pressure placed on both the surgical team and ourselves – this is the golden ticket, right? The magic bullet… or is excision just preparing the garden properly to plant the bulbs….
My story: I was weirdly giddy. I dared to hope. I had given up a chance for any semblance of a normal life. Hope both scared and excited me. I was also in total denial about how big of a procedure I was having. I was fortunate – I had fantastic surgeons and nurses who prepared me for what was going to happen, what I might expect post-op, and what the next steps would be.
This is not the end… This is the beginning!
– Post-op healing takes time
– Menses (if you still have a uterus) and ovulation can be more painful the first few cycles after excision surgery
– The pelvic muscles can worsen initially during the healing phase
– Pre-op pain may have been masking or mixed with bladder, pelvic floor, uterine, nerve pain
Undoing the years of damage
This will not happen overnight for most individuals and may take months to years of gradual improvement. Be grateful for the incremental improvements in quality of life. Each gain in quality of life is a huge victory. And understand you may have setbacks and get your healthcare team to help you through it.
– Surgical recovery: The body needs to heal from surgery. Surgical recovery is your job. You need to breathe, move, eat, sleep, and rebuild strength. Take the time to do this. Accept help. Let dust accumulate.
– Pelvic Floor: The pelvic floor needs rehab – pelvic floor physical therapy. Pelvic muscle imbalance and tension can cause pain, bowel and bladder frequency, constipation, a sense of incomplete emptying, and can worsen interstitial cystitis/bladder pain syndrome (IC/BPS) symptoms.
– IC/BPS: Endometriosis can mask or be mistaken for bladder pain. IC/BPS can cause persistent bladder symptoms. Guidelines for diagnosis and treatment of IC/BPS changed significantly in 2011 and are evolving. It is manageable but requires commitment. Diet can play a significant role for some people with IC/BPS as can the management of pelvic floor muscle spasm and tension (see above). Individuals can learn to self-catheterize and instill medications into their bladder for self-management.
– Adenomyosis: This is a tough one. Some surgeons will perform a presacral neurectomy. This can reduce the uterine pain for many individuals (not all). Some individuals do go on hormonal suppression (such as continuous birth control pills) if they wish to retain their uterus or until they choose to have a hysterectomy.
– Diet: You cannot expect to put garbage in and feel great. Many individuals with endometriosis, even after excision, have food sensitivities that make them feel unwell. Choosing whole organic (when possible) foods that are free from additives, and avoiding gluten, added sugars, and inflammatory fats are good starting places.
– Exercise: It is important to set goals to restore physical strength, flexibility, and endurance. This can start early post-operatively with slow gentle walking which is critical to preventing post-operative complications. Work with your providers and physical therapists to help set realistic goals.
– Relationships and mental wellness: This can take time as well. Consider counseling, yoga, and other restorative work.
– Pain that persists with no obvious reason: Some people can have pain signals continue to fire despite having the source of tissue trauma, inflammation, or injury removed and healed. For some, their pain processing can take time to settle down. Pain management with medications that address pain processing can help for some patients with ongoing pain. Some surgeons may begin treatment to quiet the pain processing pre-op. Some pain processing problems can be reversed so it is important that all of the peripheral pain sources are addressed. Some patients are sent exclusively for pain management for pain processing treatment and management of the peripheral pain sources are abandoned. This is not very effective.
Remember the 1+1+1 equals 10? Reversing chronic pain often requires additional work on the peripheral and central processing using physical therapy, medications, yoga and other modalities.
My story: I had extensive excision with 2 surgeons. Endometriosis required removal of nearly my entire pelvic peritoneum, endometriomas on my remaining ovary, fallopian tubes, appendix that was stuck down on my psoas muscle, freeing bowel from the pelvic wall and included a low anterior bowel resection (about 1⁄2 my rectum and some sigmoid colon), careful excision of fibrotic endometriosis from my ureters, blood vessels, and other pelvic structures. My first words waking up were “I’m not nauseated” as I had profound and relentless 24/7 nausea for the 16 months prior to this surgery – from the moment I woke up from my hysterectomy. It was very painful early in my recovery but I am pretty tough – a marathon runner. I was really surprised at just how painful that first week was.
It was clear about 2 weeks post-op that the endometriosis pain was gone. Wow. Amazing. But I was still urinating over 30 times per day and 8 times at night. I had to admit that maybe I did have this IC thing. This was more devastating for me than endometriosis because despite having symptoms for over 30 years, I never considered myself with any “chronic” health conditions. At my follow up, I had a bladder instillation. I cried – not because it hurt – because for 2 hours I had no pain at all. I had not experienced a moment with zero pain in my memory. I had real hope for the very first time.
So I sailed off into my perfect life… Not so fast. My life gets better every day but it has taken commitment by me and my provider team to make this happen. It has been over 9 years since my excision.
What my recovery process looked like after I healed from surgery:
- Get the IC under control: I was very symptomatic with IC and Pelvic Floor Dysfunction. To get control: – I did meticulous food journaling for 9 months after making sweeping changes in order to identify triggers. – I catheterized myself daily and instilled meds for the first month. Then every other day, then twice per week, then weekly… Now I do them monthly. – After very strict diet for 5 years, I can eat more liberally now – but foods that would make me sick for 3 weeks now might make me uncomfortable for a few hours or a day. – I still have flares, but I now know how to manage them.
- The pelvic floor – my nemesis: My pelvic floor has been very stubborn and over time we have learned it was triggered by multiple issues. – Pelvic Botox® x 2 – I did this a year apart and also had pelvic floor PT. – Pelvic surgeon identified a left labrum tear. This improved over time, with PT as well. – Pelvic surgeon (again) and pelvic PT suspected spinal nerve root irritation. Long story but my primary care provider and 2 orthopedists missed the diagnosis (understandable when a working marathon runner comes in with posterior thigh pain and they attributed the pain to hamstring and piriformis which made sense to me). A physical medicine physician noted one-sided weakness in my foot/great toe and confirmed nerve root compression at L5. I underwent lumbar microdiscectomy to relieve the pressure. A bonus effect has been a noticeable reduction in bowel and bladder frequency!
- Low anterior resection syndrome: I had the expected bowel frequency post-op, but mine has persisted for the past 9 years. – Diet has been very important as has pelvic floor rehab. – Although I have to organize my life around the symptoms, I have learned to manage. And the hours of daily incapacitating pain are gone. So the trade-off has been worth it.
- Restoring relationships and balance: For years I ran to control the pain, in spite of the pain, TO spite the pain. Now I run for the joy and camaraderie. – For years I avoided social situations. Now I enjoy spending time with friends, going to concerts (when we are not in a pandemic), having dinner parties, and participating in my faith community. For years I avoided sex, it has to be well timed and is not as frequent as we would like (see pelvic floor – it’s a tricky balance) but it is so nice to have that part of my relationship back. –For years I kept insanely busy to avoid any quiet time – running from the pain. Now I enjoy yoga, both its power and its stillness.
- Getting back to goals and aspirations: In 2018 after 3.5 long years I completed my doctorate in nursing. There is no way I could have done this before excision and all the work since.
- 2020 update – Surgery for adhesions: I developed symptomatic adhesions that progressively worsened. – Adhesions (scar tissue) is a normal process of healing and often cause no symptoms at all. But they can if they restrict movement of, restrict, or deform organs. – For me, adhesions caused acute distention of my abdomen, bouts of severe pain and bowel urgency, and occasional incontinence of bowels. – I underwent surgery in 2020 to free the bowel from the pelvic side wall and abdominal wall. The good news – there was only one tiny spot of endosalpingiosis and no endometriosis found during this surgery!
My story is not intended to frighten or overwhelm anyone – rather to provide hope and encouragement:
- With commitment and dedication – healing and improved quality of life is ongoing. I am 9 years out and continue to improve! And I celebrate each and every gain.
- All pelvic pain is not endometriosis.
- Pelvic floor muscles are a highly under-appreciated and common source of pain and bladder/bowel dysfunction. These neuromuscular behaviors can be rehabilitated but it takes time.
- IC/BPS is very common. It is very manageable but requires an investment of time and energy to identify triggers and commitment to your management plan.
- Pelvic floor physical therapy – a critical partner in your rehabilitation. Physical therapy plays a role in managing endometriosis, pelvic floor dysfunction, interstitial cystitis, pudendal neuralgia, adhesions, hip and back issues and more.
- Sometimes you have to address a new or stubborn issue. Advocate for the “next steps” in your care.
(c) Copyright Susan Pierce-Richards, DNP, ARNP, ANP-BC, FNP-BC, June 2020