May 14, 2020, is a date that I will never forget. It’s the day that I received my excision surgery by a skilled expert after winning a battle with insurance to pay for it. That day was so meaningful to me, yet I can look back now and agree with the experts who say excision is just the beginning.
Going into surgery, I “knew” that my excision was the first step to recovery and healing with endometriosis. Though it’s not a cure, I fully expected my life to change dramatically . . . and it did.
Unfortunately, as any chronic illness warrior knows, there is always “something else” and the road to a better quality of life is continuous. Let me tell you, it’s called chronic illness for a reason.
So, today I’m sharing the many things I have learned since having skilled expert excision. I will warn you now, excision recovery is not always butterflies and rainbows. My goal on Eighty-Six the Endo is to always share the raw reality of what it means to live with endo.
Zero Pain Post Excision is Unrealistic
Laparoscopic excision of endometriosis is only the first step to addressing endometriosis properly. The reality is that endometriosis can cause a cascade of other problems. Oftentimes, people experience debilitating endo pain for years or decades. This continued experience of chronic pain can cause problems with the pelvic floor muscles that are constantly in a state of tension from pain, leading to pelvic floor dysfunction. Unfortunately, excision surgery does not fix or treat pelvic floor dysfunction. This is why working with a pelvic floor physical therapist is an important part of post-surgical recovery.
Another problem that can oftentimes develop with years of debilitating pain is central sensitization, which is a complex condition that is best explained in this post. But ultimately, desensitization is an important part of addressing other pain generators.
Lastly, many endometriosis patients (myself included) have several other conditions; many of which can cause pain and are also incurable. Fibromyalgia, Interstitial Cystitis, Ehlers-Danlos Syndrome, etc. All this to say excision of endometriosis does not mean other pain generators will be fixed.
Emotional Healing Is Its Own Beast
So often I have found myself in the depth of depression because I know that I continue to have pain symptoms from other diagnosed conditions, as well as suspected conditions. On the other hand, I have had amazing pain free days in which I was able to complete large home projects on my own and end the day blissfully.
Other than my own physical pains, I also battle(-ed) feelings of self-doubt and worthlessness. It’s strange. I have always had a healthy self-esteem, but after 6 years of infertility, my self-image has shifted.
I know I am not alone. But I also know, ultimately, I am worthy of love and all the things I desire. Despite this, the roller coaster with chronic illness is very real and seeking professional counseling is important and necessary.
While I am on the topic, I want to be sure to provide you with resources to support groups, mental health professionals, and suicide prevention hotlines. You are worthy and loved. Please seek help when you need it.
Suicide Hotline and Prevention:
- US National Suicide Prevention Lifeline: 800-273-8255 or 9-1-1
- List of International prevention hotlines: https://www.opencounseling.com/suicide-hotlines
- Endometriosis Crisis Connection
Facebook Education and Support groups:
- ExtrapelvicNotRare Endometriosis Education and Discussion Group
- Houston Area Endometriosis Group
- Endometriosis Crisis Connection
Virtual Mental Health Professionals
- BetterHelp
- Check to see if your employer has a EAP (employee assistance program). They oftentimes will provide free mental health and family health services to employees.
Mobility-Aides Are Nothing To Be Ashamed Of
During my immediate surgical recovery, I had no shame in using a walker or shower chair. I knew it was part of safe surgical recovery. But over the past years, my hypermobile connective tissue disorder (hEDS) has become increasingly worse.
Recently I have NEEDED to use a cane to get around on my bad hypermobile days, which are becoming more frequent and severe. I also have received a handicap parking placard by doctors’ orders. It’s very difficult to wrap my head around the fact that my mobility is now being affected by my health.
However, as a nurse, I know the importance of using mobility aides when necessary. Falls could be detrimental in some cases, and still cause other impairments in the case of severe injury. With my long list of daily battles, I do not want a severe injury to be added to the list.
All this to say, disabilities and mobility-aides do not define you as a person. If you need them, use them; and know that it is not okay for people to discriminate you or question your need for a mobility-aide.
Another Surgery May Still Be Necessary
I hate to admit it, but it’s true. Expert excision with even the top experts may still result in the need for another surgery. Though, I will also admit, that every person’s case is different, and most cases do not require multiple surgeries if done the right way.
In my case, another surgery is in my future because I have suspected adenomyosis and an endometrioma. To add, I knowingly did not address possible thoracic endometriosis at my last surgery because of the risks and lack of skill available to me locally.
My excision expert did an incredible job. I do not doubt that. At the time of my surgery, there were no visible signs of adenomyosis (boggy or enlarged uterus) and I still had goals of conceiving post-surgery. That being said, my uterus looked good, and fertility was promising.
Likewise, my ovaries did not have any endometriosis, per my surgeon. So, I do not blame my surgeon and just attribute this to the chronic nature of endometriosis; though I always know there is a possibility that I am wrong and there was endo left behind.
Update March 2024: On November 4, 2021, I consented to a total hysterectomy, laparoscopic excision (if need), and a video-assisted thoracic surgery (VATS) at the Center for Endometriosis Care. That surgery confirmed that my previous excision was done properly, as no endometriosis was found on the suspicious tissue that was excised by Dr. Sinervo. It also confirmed that I had adenomyosis. Thankfully, no thoracic endo was found.
Excision Is Just The Beginning…
In the end, the gold standard of care is still skilled expert excision. Though my quality of life did improve with excision; I still battle other pain generators. With the new development of suspected adenomyosis and an endometrioma seen on ultrasound, I have decided to pursue surgery with Dr. Sinervo at the Center for Endometriosis Care. I am optimistic and continue to fight for a better quality of life.
I hope that this post does not deter you from seeking an expert in laparoscopic excision of endometriosis. My goal is to only bring awareness and inform you of the possibilities post excision surgery. This is my own experience and mine alone; your experience may be very different.
As always, the best thing to do is to educate yourself and advocate for the care you deserve.
