Can Too Many Surgeries Make Endo Worse?
A couple of months ago, I was surprised to see someone posting on a social media group I am a part of for people with endometriosis. In particular, the person posted a link to a recent piece published in a reputable media outlet about whether or not surgeries, and especially multiple surgeries, actually benefited endometriosis.1 It caused quite a stir on the social media page, with some firmly agreeing with the premise of the piece and others emphatically disagreeing.
Where do I stand? Somewhere in the middle.
Key takeaways from the article
First, the article explained that certain types of endo may be more likely to benefit from surgery - namely, deeply penetrating endo and those that form chocolate cysts on the ovaries (which I have had).1 It noted that many people, when they have pain for too long, they become more a maladaptive tic of the central nervous system than about the initial source of the pain. Some of the doctors stated that if the pain is neuropathic, severing more nerves during repeated surgeries could make it worse, or not help at all because it's not addressing the nerve pain part more directly.1
Those who have had multiple surgeries
I do agree with some of these ideas. I have met many other people with endo who had so many surgeries that I was shocked. It seemed it could often be counter-productive and caused more trauma and hurt in the body. When people would tell me they had four or five or seven surgeries, I would cringe. I never recall them saying "And now I am great." Of course, this is all anecdotal.
Up until 2019, I had only had one other surgery for endo and it was in 2002 to diagnose and remove a bunch of it. The surgery took a lot out of me and it was months before I really fully felt the improvement I had hoped for.
Surgery is needed for diagnosis
I do think that pain can become an amplification effect of the nervous system despite where it originated from. But it can be from the source too. The problem is, surgery is needed for an official diagnosis of endo as well as to determine what kind of endo one has. Even though the article teased perhaps MRIs and ultrasounds could get us there one day without a knife1, we're not there yet. And in the meantime, even for disability-related stuff, I needed a formal diagnosis and I am sure others do too.
Things left out of the article
Strangely, the article didn't even mention adenomyosis in passing, or the differences in surgery types - such as a radical excision versus just a general lap with some removal.1 There's a vast difference and it should matter. Many gynos are not as knowledgeable about endo and from what I have read, excising most or all of endo has better results than leaving a lot behind.
Handle with great care and best interests
Ultimately, for me, I needed a hysterectomy for sustained relief. This is because I had adenomyosis (confirmed by a high contrast MRI) and other treatments failed. I don't think any other type of treatment would help dampen that pain when my periods came.
And so, I think that surgeries still do serve a very important role and shouldn't be dismissed. At the same time, I think surgeries should be minimal and very targeted to the individual's needs and situation. I think at a certain point, if one is undergoing surgery after surgery for endo, it may cause more harm than good and I would worry doctors are not really acting in the best interest of the patient. But that's just my opinion, based on my personal experiences.
What do you think? Have you had multiple surgeries? Did they help or hurt? Were some more beneficial than others? Please feel free to share your experiences in the comments!
Do you know someone that has made a difference with endometriosis advocacy?