“Managing Expectations”
by Susan Pierce-Richards, MSN, ARNP, ANP-BC, FNP-BC

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 women 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 women 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 don’t yield all of its blooms the first year…

Timeframe: Symptom onset to Pre-Op for Expert Excision

Women 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.
  • Women can develop pain from this muscle tension; can develop bladder pain syndromes, 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 women with endometriosis and pelvic pain have more than 1 source of peripheral and/or visceral nociceptive (generally interpreted as painful or unpleasant) signals.

Many women 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 women 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/GI symptoms.

  • Can result in depression and/or anxiety symptoms
  • Maladaptive habits
  • Hopelessness
  • 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.   First sex was painful and was painful until I was 45 years old post excision.
  • By 20’s I had pain throughout the month, pain with bowel movements regardless of time of month, pain with passing gas. I had a “small bladder” and urinated a lot, and frequent night awakenings.
  • I had several years of infertility, was diagnosed with PCOS but the symptoms of endometriosis were never elicited and signs of endometriosis (complex cysts, cul-de-sac nodularity) were not explored by my providers. I did get pregnant and have a 10yo biological daughter. I also have an 8yo adopted son. I would honestly live through ever 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. I was just ignored anyway.
  • At 44 I underwent a hysterectomy for bleeding daily x 3 years (slowed down my Mirena IUD). Again, I did not report pain because providers never addressed it.
  • At diagnosis during the hysterectomy, I had a fixed pelvis, extensive dense adhesions, obliterated cul-de-sac, bilateral very large endometriomas, bowel endometriosis, widespread peritoneal disease.   The surgeon was unable to remove the endometriosis but did biopsy.
  • I then did a 6 month course of Lupron so that I could buy some time. I did very poorly on Lupron. I ultimately had upper GI bleeding which expedited my need for a higher level of care.
  • Throughout this time I worked like a dog – and exercised. Though this sounds counter intuitive, it was my drug. I could not tolerate narcotics and a few years before surgeries I could not tolerate NSAIDs either so distraction was my only tool. I withdrew from friends, family, 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, and 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 it just preparing the garden properly to plant the bulbs….

My story:   I was weirdly giddy. I dared to hope. I had given up any chance for any kind of normalcy. Hope scared me, excited me. I was also in total denial about how big of a procedure I was having.   I was fortunate – I had a fantastic surgeons and nurses who prepared me for what was going to happen, what I might expect post op and what the next steps were….

 Timeframe: Post-op

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
  • 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 women 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 set backs and get your healthcare team to help you through it.

  • Surgical recovery: The body needs to heal from surgery. Surgical recover 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, can worsen IC symptoms
  • IC/Painful Bladder Syndrome: Bladder symptoms can be masked or blamed on endometriosis. Persistent bladder symptoms can be Interstitial Cystitis/Painful Bladder Syndrome. Guidelines for diagnosis and treatment changed significantly in 2011 and not all providers are up to speed on them. It is very manageable. Diet is critical as is management of pelvic floor muscle spasm and tension (see above). Women can be taught to self-catheterize and instill medications into their bladder providing tools for self-management.
  • Adenomyosis: This is a tough one. Some surgeons will perform a presacral neurectomy. This can reduce the uterine pain for many women (not all). Some women do go on hormonal suppression (such as continuous birth control pills) until they are ready to have children.
  • Diet: You cannot expect to put garbage in and feel great. Many women 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, inflammatory fats are good starting places.
  • Exercise: It is important to set goals to restore physical strength, flexibility, endurance. This can start early post operatively with slow gentle walking which is critical to prevention of 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. I heard one surgeon talk about using medications to quiet the pain processing pre-op and saw better outcomes post 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 it sometimes 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 was extensive – nearly my entire pelvic peritoneum, endometriomas on my remaining ovary which were removed, fallopian tubes which were removed, appendix which was removed and was stuck down on my psoas muscle, bowel was adhered to the pelvic wall, freed and I underwent a low anterior bowel resection (about ½ my rectum and some sigmoid colon), fibrotic endometriosis on my ureters, some blood vessels and other pelvic structures. My first words waking up were “I’m not nauseous” 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 at about the 2 week mark that the endometriosis pain was gone. Wow.   Amazing. But it was also clear I was peeing over 30 times per day and 8 times at night and maybe I did have this IC thing (which 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 but 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 on my part, and my provider team’s part to make this happen. It has been 4 years since my excision. What has 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. The next few months every other day, then twice per week… then weekly for a couple of years. Now I do them monthly.

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 PCP, ortho x 2 missed the diagnosis. Physiatrist noted unilateral weakness in 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 4 years.

  • Diet has been very important as has pelvic floor rehab
  • Recent improvement after L5 microdiscectomy.

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, having dinner parties.
  • For years I avoided sex, it has to be well timed and isn’t 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.

My story is not intended to frighten or overwhelm anyone – rather to provide hope and encouragement:

  1. With commitment and dedication – healing, improved quality of life is ongoing. I am 4 years out and continue to improve! And I celebrate each and every gain.
  2. All pelvic pain is not endometriosis
  3. Pelvic floor muscles are a highly underappreciated and common source of pain, bladder and bowel dysfunction. These neuromuscular behaviors can be rehabilitated but it takes time.
  4. IC/PBS is very common. It is very manageable but requires an investment of time and energy to identify triggers and commitment to your management plan.
  5. 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.
  6. Sometimes you have to address a new or stubborn issue. Advocate for the “next steps” in your care.

(c) Copyright Susan Pierce-Richards, MSN, ARNP, ANP-BC, FNP-BC. Used with permission.