Since my excision surgery with Dr. Sinervo at the CEC, I have received a lot of emails from women who are on the fence about having expensive surgery with an endometriosis excision specialist or a less costly surgery with an endometriosis specialist.
It doesn’t sound like it, but these two are very different. A surgeon that practices the excision technique to remove endometriosis is able to cut out the deepest layers of the disease, leaving nothing behind and a very low chance of it returning. Right now, excision is the gold standard method of treatment for endometriosis.
On the other hand, there are doctors who focus on endometriosis, but are still practicing a traditional surgical technique called ablation like any regular OB-GYN might. I am referring to practices who claim to specialize in endometriosis, but do not perform excision surgery (there happens to be one in my area). The ablation technique they often use only removes the surface layer of the disease, leaving plenty behind to continue growing and worsening. More often than not, women who undergo ablation surgery end up needing more surgeries in the future. In addition, many women only get relief from symptoms for a short period of time, or in some cases, no relief at all.
In my few years dealing with endometriosis I have learned that this disease is brutal and frighteningly persistent. After I was diagnosed with a large endometrioma in 2016, I was scheduled for a surgery right away with my regular gynecologist, who is one of the best in my hometown. He told me that he would get this taken care of and I’d be pain-free in no time. This surgery would end up being my definitive diagnosis of endometriosis. I didn’t know much about this disease beforehand, so I completely trusted that my gynecologist would rid me of my pain and make it all better. I wish I had known that while his credibility is very high in gynecological surgery, I needed a different method to successfully remove all of my endometriosis than what he was offering.
Within three short months after surgery, I was experiencing pelvic pain again. I went in for an ultrasound and learned that a few more endometrioma’s had found a home inside my pelvis. I was devastated to hear that I needed to undergo another surgery within the next month. But I wondered, how would it be any different this next time around? Feeling hopeless and desperate for answers, I started talking to women on social media who also suffered with the disease. That is when I first heard of the gold standard treatment called excision surgery. I had multiple young women tell me that excision surgery was a huge success for them, and that it was my best chance for fertility and a pain-free life.
But like many, I was still torn between seeing a local endometriosis specialist vs. an out of state endometriosis excision specialist. Truth is, a lot of information surrounding endometriosis is often misleading and inconsistent – especially since there is no known “cure”. When you think of endometriosis speciality practices, you imagine that all are performing the same technique to remove endometriosis – that being the best technique possible. But this is not the case.
Although a practice is focused on endometriosis patients, it doesn’t mean that they are using the best techniques possible. I have found that many practices primarily use aggressive drug therapy to suppress the disease – which comes with a slew of awful side effects – and is widely unsuccessful. I have also found that unlike excision surgeons, those who use the ablation technique have a goal of removing the surface of the disease to open a short-term window for fertility. In contrast, an excisionist is able to remove the deep layers of the disease, with the goal of it never returning in the long term. They do not call excision surgery a cure, but it is a cure for many women.
With excision surgery, no hormone therapy is needed to keep the disease from returning and there is less than a 5% chance it will return. This is why I chose to pay thousands of dollars for the skilled hands of an excision surgeon. Here is how I rationalized the cost of surgery:
As I said before, endometriomas were a huge problem for me. Because they are so dangerous they require surgery. I wasn’t about to take a risk with a doctor I was not 100% confident with. I mentally could not handle the idea of more endometriosis surgeries and continued pain in my future, especially with my wedding in ten months.
So here were my options:
1.) I could pay a few thousand dollars for one surgery and likely never need another again. Most importantly, I could go on living a very full life.
2.) I could see a doctor who uses the method that failed me before, and likely need countless surgeries for the rest of my life. This would end up amounting to a similar cost in the long run, assuming I’d need more drugs, treatment, therapy, etc. Not to mention, I’d be in and out of a job due to pain.
I understand that thousands of dollars is a lot for one surgery, but people are so willing to spend far more money on a college degree. Well, this is my health and entire quality of life we’re talking about. Paying off a few grand to enjoy the rest of my days on earth is honestly nothing to me when it comes to how painful this disease has been emotionally and physically. Because of excision surgery my quality of life has improved drastically. I can honestly say it was the best decision I have ever made.
I know everyone’s situation is different and that some will not agree with my opinions on this. Some of you may have a wonderful quality of life despite your endometriosis, making this decision very different for you. But chances are if you are looking into excision surgery, your quality of life is suffering. People tend to put their money towards a lot of things other than their health and I think that is terribly sad. From my experience, without health, there is not much.
Everyone, even you, deserves a pain-free life. Although there is not a lot of talk or awareness about endometriosis, our pain is real and this disease is a bitch. We may be overlooked often, but we are fighting a real battle and deserve the best treatment available.
You ARE worth it.
Throughout my journey I have been amazed with the connections I’ve made with other women and how supportive people have been. If you are in a tight spot with money, crowdfunding is a great option. Many women have used GoFundMe to share with family and friends. You’d be surprised with the response you’ll get from sharing your story.
If you want more information on my experience with excision surgery, travel tips, and post-op/pre-op advice please see this post.
If you’re looking for a credible excisionist near you (for any country), I highly recommend joining the Facebook group Nancy’s Nook Endometriosis Discussion and Education. You will find great advice and resources here. Use this group from a computer not your phone, as it is very difficult and confusing to access files from there.