4 Possible Reasons for Pain Post Excision Surgery for Endometriosis
So you’ve had excision surgery and you’re still in pain. This blog is for you. In this blog post I share about 4 possible reasons for pain post excision surgery. I touch on the facts of excision surgery, pain pathways, as well as multiple diagnoses.
What Is Endometriosis?
Endometriosis is a full body inflammatory disease that is centered around immune dysfunction. It is a disease where inflammatory endometriosis lesions that are similar to the innermost lining of the uterus are outside of the uterus. These lesions are hormone sensitive and respond to the hormones of the menstrual cycle, but endometriosis is not caused by excess hormones or excess estrogen. Some explain the lesions as tiny blisters all over your internal organs causing immense amounts of pain. It is also listed as one of the top 20 most painful conditions in the world and unfortunately, there is no cure.
There are an estimated 200 million people worldwide that have endometriosis and the reality is that number is probably a lot higher due to the lack of understanding from our medical community and the delay in diagnosis of this disease. 1 in 10 people have endometriosis and that does not include the trans and non binary folks who have not been studied. It takes an average of 10 years to get diagnosed with endometriosis. And the most common surgery performed by a normal gyn is ablation/coagulation which leads to more pain and scar tissue, prolonging pain and suffering for many women. Click here to read more about endometriosis and click here to learn more about common endometriosis symptoms
I want to start off by saying that the pain you are feeling is real. You are not faking it or imagining it. Your pain is there for a reason. In this blog we will be discussing three possible reasons why you are still feeling pain post excision surgery.
Pain Post Excision Reason #1: Not All Excision Specialist Are Created Equal
The first possible reason is that there was endometriosis, scar tissue, adhesions left behind/missed during your surgery. Excision surgery by a trained endometriosis specialist is the gold standard of surgical treatment for endometriosis. However, not every OB/GYN is trained properly in excision surgery. And even if they do person excision surgery for endometriosis, they have not done the hundreds that are required to be considered a specialist in the area of endometriosis. It is such a delicate surgery, the lesions can be clear, they can be microscopic, and they can be hard to find. Trained and skilled endometriosis specialists can look at the configuration of blood vessels on the peritoneal wall and notice that there is something abnormal and realize that it is endometriosis, whereas a normal OB GYN without the trained eye can miss the little subtle differences that make all the difference! Excision surgery with trained endometriosis specialists is especially important if you’ve had previous ablation/coagulation surgeries, as this type of surgery can lead to more scar tissue and adhesions that can cause unfathomable amounts of pain!
Click here to learn more about excision surgery . If you are wanting to find an excision specialist, I recommend joining the Nancy’s Nook Education FB Page as there is a list of excision specialists by state and country. Here are a few other good places to learn about endometriosis surgery: The Center For Endometriosis Care & Vital Health Endometriosis Center
Pain Post Excision Reason #2: Pain Pathways
The second reason for pain post excision surgery is that there is a pain pathway that is still being stimulated causing your pain. Pain is created in the brain when neural pathways between the brain and body are stimulated and in the case of chronic pain, these pathways are over stimulated causing them to become a permanent pathway.
The best example of this that many people have heard about is “phantom hand” pain. Where someone who no longer has a hand can still feel pain and sensations in that hand even though it has been amputated. The hand is no longer there, the person should not be experiencing pain in that hand, but they do, and its because the pain isn’t in the hand, it's in the brain.
In the case of pain post excision surgery, it is similar to the phantom hand, the endometriosis lesions have been removed so they should not be able to still cause pain. So why is there still pain? Because the pain isn’t completely in the abdomen, it's in the brain too. The best way to overcome this pain is to retrain the brain, more blog posts on this to come.
Pain Post Excision Reason #3: Stress
The third possible reasons for pain post excision surgery is stress. Did you know that thoughts and emotions, whether you are aware of them or not, are major contributors to causing chronic pain signals? The pain pathways that I was discussing before can become reinforced by our reactions, thoughts, and emotions about pain. These thoughts and emotions about pain are completely normal, however, the stress that is brought on by them typically causes us more harm than good. The stress of reduced income, reduced activity, etc can reinforce these pain pathways and turn them into stress producing pathways. In situations like this the brain will continue to create pain because that is how it was taught to deal with the stress. This type of connection can cause physical symptoms in the body such as pain, diarrhea, insomnia, anxiety, etc. The best example of this kind of pathway is when you get a nervous tummy before something stressful such as a public speaking event. If this type of neural pathway can create physical upset in the stomach, why can’t it create pain?
Pain Post Excision Reason #4: Multiple Diagnosis
The fourth and last reason for pain post excision surgery is that there are other diagnoses causing your pain. The pain we experience isn’t always only endometriosis, sometimes there are other things causing the pain we experience such as GI distress, adhesions, ovarian cysts, adenomyosis, interstitial cystitis, etc. It's always possible to have more than one thing contributing to pain so if this is something you are still experiencing, please reach out to your doctor to discuss other options.
I want you to know that you are not alone! There are millions of us out here supporting each other, fighting for a diagnosis, fighting for better healthcare! United we are so much stronger! Do not hesitate to reach out to me by email at firstname.lastname@example.org, I will always be here for you <3
Chelsea Bri Blackburn | Endometriosis Blogger & Podcaster
Podcast: The Endo Babe Podcast