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Continued Pain and Symptoms Post-Excision

It can be really heartbreaking to have continued pain and symptoms post excision surgery, especially if we didn’t get the outcome we were hoping for, especially if we waited years for treatment, or had to travel out of our country to get excision, or went into debt, or we quit our jobs or were fired because they don’t give us the PTO we needed to recover post surgery. There are many ways in which surgery can be a big decision and undertaking physically, emotionally and financially. If we don’t get relief from our pain or symptoms, it can feel hopeless and one can wonder where to go from here, especially if our excision surgeon only does excision and doesn’t have recommendations or referrals for post-excision management of endometriosis.

Excision surgery is not a cure, but rather it’s the surgical cornerstone of a multidisciplinary approach to endometriosis. Endometriosis is a complex inflammatory condition that often needs a full-body approach. Excision is a very important step, but it’s just one step to try to reduce pain and symptoms and have a better quality of life. Sometimes, depending on the location of our endometriosis, excision can provide noticeable relief quite quickly post-surgery from certain symptoms. For example, if our bowel was narrowed making it painful to pass stool and the surgeon restored this distorted anatomy. Or if our endometriosis was irritating a nearby nerve and now was excised, eliminating that direct nerve irritation. Or if we had a rectovaginal lesion removed which was causing pain upon penetrative sex. Hearing stories like these can fill us with hope that we too will have immediate relief upon waking from our surgery, but depending on our body, our medical history (have we had other surgeries or hormone injections etc that have caused us long term side effects?) our co-conditions, and more, we may need to keep addressing different factors to our pain and symptoms.

Every person is different and needs an individualized approach. Here are some questions to explore.

Important: These questions can be helpful explorations to try and discover how we can continue to improve our quality of life and what we need as individuals in our own unique situation. Post-excision pain is not a patient’s fault, no matter the circumstance, and these questions aren’t intended to blame or shame anyone.

Do I need to treat other pain generators and co-conditions?

It was only post excision that I’ve been able to tease apart which symptoms were endometriosis vs another condition, and this has allowed me to start addressing my co-conditions and see progress with reducing them. See some ideas on my page Common Co-Conditions.

Will I find more relief using a full body approach?

See some ideas on my page Full Body Approach. For me, while I was able to find relief from my painful sex, menstruation, and bowel movements post excision, it was only once I addressed my gut health, hormone health, mental health, and tendency to be in a heightened state of alert that I was finally able to get out of chronic pain.

Did I actually have excision surgery or was it ablation?

The post op report, or clarifying with your doctor, can help confirm the type of surgery you had. Some surgeons do ablation instead of excision, or a combination of ablation and excision. For example, the surgeon excises your endometrioma, but ablates your superficial peritoneal lesions.

With ablation surgery, many patients find their pain returns within just months after surgery. This is because with ablation, endometriosis isn’t removed at the root and is left behind (so your symptoms continue). This is called persistence. Recurrence is when endometriosis is removed but comes back; persistence is when it wasn’t removed in the first place. Ablation can also cause more damage by leaving behind carbon and thermal damage, which can stimulate a foreign body giant cell reaction which can be its own cause of pain.

Did I have a complete excision or was endometriosis left behind?

Ideally, excision really should be complete excision on all areas where there is endometriosis.

However, some surgeons leave endometriosis behind intentionally because:

  • they believe it’s too “risky” to remove

  • they believe the endo they left is inconsequential (“inactive” they might say – although there is no way to know which lesions are causing a person pain and symptoms and which aren’t. All lesions should be removed.)

  • they believe that Lupron will clean it up (it won’t!).

Some leave endometriosis behind unintentionally because they don’t have the skills to recognize subtle appearances of endometriosis; or they don’t excise deep enough or with wide enough margins.

Excision surgery is highly operator dependent. Unfortunately, there are only a few hundred excision surgeons worldwide, and their skills vary, their experience varies, the number of surgeries they do a year varies, and so excision is not the same among all of us. If you haven’t already, it’s never too late to ask your surgeon questions to judge their skill level and experience with recognizing and excising endometriosis. You can also ask for your surgery pictures – or video if they have it – and get a second opinion with another excision surgeon.

Endometriosis left behind can be a continued source of pain. If you’ve had 2 or more excision surgeries with the same surgeon and are not getting relief from these surgeries, it’s a good idea to get a second opinion from another excision surgeon. Some of the top excision surgeons will also refer you to a trusted colleague of theirs if they’ve done 2 excisions but you still have recurrence or pain.

Do I have true recurrence of endometriosis?

Recurrence/persistence rates vary per surgeon, but many experts have rates around 7-20%. All surgeons have persistence and recurrence, even the top tier surgeons.

Some people do need another complete excision for their endometriosis after some time. Unfortunately, some will even need multiple complete excisions – even if they see high volume, expert surgeons. In cases when endo is found at reoperation, often there is much less endometriosis than there was at the first excision. When there is recurrence of endometriosis, it typically tends to involve less areas than seen in the prior surgery. Endometriosis recurrence also tends to be superficial, not deep nor surrounded by fibrosis.

Note: Endometriomas can have high rates of recurrence, even when excised by an expert, but an endometrioma recurring doesn’t mean that your superficial or deeply infiltrative endometriosis has also recurred in other areas.

Generally speaking, studies suggest that if endometriosis recurs in a person, it usually happens within 3-5 years in about 50% of people with recurrence. While for some patients endometriosis could recur quite quickly, such as 6 months post surgery, data suggests that this would be the case in a very low percentage of individuals. If your surgery was just a few months ago however, and you have continued symptoms and pain, this may point to any of the following:

  • true recurrence of endometriosis

  • endometriosis persistence and not recurrence, meaning that your endometriosis wasn’t fully removed in the first place.

  • post-surgical pain. If you just had extensive excision, it can take the body months to recover. While many surgeons tell their patients “you’ll be back to work in 2 weeks”, this is far from reality for most. I had a lot of post surgical pain for 4 months post excision, and weird pains here and there for several months after that. Not to mention fatigue for months while I healed. Give yourself time to recover, but of course, definitely bring up anything alarming with your doctor.

  • you may need to work on your other pain generators and co-conditions, because not all pain is from endometriosis. Sometimes people reoperate because they are sure their endometriosis is back, but there is no endometriosis found on pathology but rather adhesions, adenomyosis, fibroids, or other something else. And unfortunately, after years of systemic inflammation and this disease ravaging your body, it can have an effect on your pelvic floor, central nervous system, gut health, and more. 

If a patient continues to have pain post excision, many surgeons will look for other pain generators (especially if their symptoms seem to indicate something other than endometriosis) to see if they can be treated through a non-invasive way, to avoid surgical risk and trauma for the patient before operating on the patient again. Many surgeons only specialize in excision surgery, and typically aren’t able to guide the patient through dietary changes, hormone replacement therapy, pelvic floor therapy, etc, although they may suggest these practices. Because of this, patients can sometimes feel lost or overwhelmed about their next steps post-excision as they figure out what practitioners they need to see.

Asking questions after your surgery

Here’s a list of some questions I put together to ask after your surgery, typically during the post-op appointment, but you can always ask at any time afterwards.

Be gentle with yourself

If you are still having pain and symptoms post-excision, I’m so sorry to hear that and I see you. Please don’t judge yourself if you didn’t have the outcome you were hoping for, because it’s not your fault. Being a full body disease and having a full body impact makes it so complex to treat. Deciphering your personal puzzles to your symptoms can seem like an endless journey that can be very intimating, frustrating, and overwhelming. However, with time, many people do figure out some of their main puzzle pieces, and I hope you will be able to as well.

Endometriosis is a horrible disease, it’s under researched, misunderstood, riddled with misinformation, and the gold standard treatment is inaccessible to the majority of patients, and even for the patients who have access, they often have to wait years or make financial or personal sacrifices to access it. The medical community needs more surgeons, more training, more excision-specific fellowships, more multidisciplinary specialty centers, actual excision insurance reimbursement codes, the list goes on.

And we patients are suffering from the lack of access, doing the best we can for ourselves in the system that exists. While we are grateful to the surgeons who devote their careers to endometriosis and have learned how to properly excise it, the overall medical system is a disgrace when it comes to treating a disease that affects 200,000,000 people worldwide.

Excision is inaccessible to the majority. For those who want to have it but can’t access it, I truly hope it will become accessible to you in the future. And for those who did access it but didn’t have the outcome they’d hoped for, I’m sorry you’re in this position and I truly hope you can find relief.

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