One size does not fit all
Excision is step one, and not all pain is resolved in one step.
By Nancy Petersen
One size does not fit all: by that I mean excision surgery will address endometriosis, assuming the surgeon is truly trained in disease recognition, distribution, and removal (not many gynecologists are in fact trained for this level of surgery). That is one aspect of pelvic pain, and it has to be expertly addressed to eliminate endometriosis as a cause. Other pelvic pain generators need to be addressed when pain persists after EXPERT excision. It is common for the disease to be missed by general gynecology at surgery, or for the disease to be intentionally left when the surgeon does not have the skills or training or when they believe they can “clean up” endo with medication (medication/hormonal treatments may seek to alleviate symptoms but do NOT stop the progression of the disease).
Other pelvic pain generators need to be identified, and a treatment plan devised for each. You cannot remove endometriosis and expect pelvic floor dysfunction to fully resolve. Nor does the removal of endometriosis address a painful uterus with adenomyosis, nor does excision resolve ovarian cysts which can return by pushing up from the body of the ovary with cycles. Bladder issues, such as interstitial cystitis, will also need its own treatment plan if present. Wellness is a journey, while some will feel well with endometriosis excised, others will have other issues that need attention.
Likewise, having been in chronic pain for years, you may need some emotional support to get past the impact of treatment failures, anger at the system (which did not fail you on purpose, rather did not know what it did not know, so did what they thought would help). It can be useful to seek help, even after resolution of symptoms, in learning to let go of the anger and victimization one can sometimes feel from being chronically ill and losing out on many aspects of life for many years. The nature of relationships also changes after the disease is resolved. Family members roles will change as you become healthier, and your role will as well. This can cause conflict and counseling can help. There is a sense of victimization patients can feel when the system fails them, but you can get past it rather than continue in that mode. It’s a decision you make.
An often used treatment for endometriosis is to lower the estrogen in a woman’s body via hormonal suppression. Birth control can mimic a pregnancy state, while other treatments, such as gonadotrophin-releasing hormone agonists (GnRHa), can mimic a menopausal state.
I had never heard of pelvic physical therapy prior to beginning my doctoral program at Duke University. I remember very clearly when I first learned that some physical therapists did “that.”
Endometriosis is intimately linked to mental health. While depression and anxiety together impact 10-20% of the general population, metanalyses (studies looking at the results of other studies to find trends) show higher rates of depression and anxiety in people with endometriosis
Find the right therapist can be just as difficult as finding an endometriosis specialist. There are many different types of therapists providing many different types of therapy out there, and “fit” between you and your therapist is very important. I’ve included some helpful information and tips below to help you find a good therapist if you’d like some support along your Endo journey.