Continued Pain and Symptoms Post-Excision

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Remember, the information on my website, podcast, Instagram, and any other ways I communicate and/or produce content is educational information only and not medical advice. Always check with your qualified medical professional before making any changes to your treatment plan for endometriosis or any other health problems. See my full disclaimer here.

What we need is individual

Here are some questions 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. Continued pain post excision is not your 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?

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. 

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?

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.

If a person continues to have pain post excision, many surgeons will look for other pain generators to see if they can be treated through a non-invasive way, to avoid surgical risk and trauma for the patient before operating on them 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, it’s often very overwhelming to figure out our next steps post-excision: What do we need? What specialists should we see?

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. See some ideas on my page Full Body Approach.

Additionally, some people choose to continue taking hormonal suppression post excision, especially if they are looking for a form of birth control. In terms of symptoms recurrence post surgery, there are various studies which show that hormonal suppression may help with additional pain relief post excision, or may extend the time a patient is pain free post excision. 

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). 

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 endometriosis 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
  
  
• they don’t excise deep enough or with wide enough margins

Excision surgery is highly operator dependent. Surgeon’s 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.

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.

How long has passed since my excision?

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 you just had extensive excision, you could be dealing with post surgical pain, as 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 post surgical pain for 4 months post excision, 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.

What are my expectations of excision?

This is a question I explored for myself post-excision. I had originally thought that excision would make me feel like I no longer have a disease, but it definitely didn’t in my case. I also no longer think this is a very realistic expectation, since endometriosis is an incurable, chronic, full body disease. I’ve had huge improvements from excision, and can do so much more post-excision than I could pre-excision, but my body still has a disease which affects me often. I’m not incapacitated like before, but I still have symptoms and can’t do whatever I want when I want. 

Be gentle with yourself

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. We may have waited years for treatment, had to travel out of our country to get excision, or went into debt. Surgery is a big undertaking physically, emotionally and financially. If we don’t get the relief we wanted 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.

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 to find more relief. You deserve it.