Endometriosis Awareness Month
March 7, 2022
As March arrives and we begin to help bring more support to endometriosis, I like to think back to what got me to the point that I would be writing an article about endometriosis, but I want it to be brief because this blog really isn’t about me, it’s about the patients. Although I do feel this intro is important, as I’m an excellent example of the problem with endometriosis care.
I’m a male gynecologist that ended up specializing in minimally invasive gynecologic surgery with a fellowship after residency. I don’t know anyone in my family or close to me with endometriosis. As a medical student I learned about endometriosis on my gynecology rotation and was told that it is a diagnosis of exclusion. The “proper procedure” was to rule out other possible causes, including gastrointestinal, musculoskeletal, or psychological causes. Once you had done that, patients should be started on NSAIDs. If those didn’t work, birth control, and if that didn’t work, they need to try Lupron. Only after you have done that entire workup should you then consider surgical management for endometriosis and that was only if they had some benefit from Lupron suggesting they have disease. I graduated medical school in 2011, this was not that long ago.
It was in 2012-13 when a fellowship-trained minimally invasive gynecologic surgeon joined our residency department. When this surgeon joined, they quickly started seeing a significant number of endometriosis patients. There were then grumblings about how this surgeon would operate on anyone and instead of listening to gossip and rumors, I decided to learn from this surgeon. As it turns out, this surgeon not only had extensive experience with endometriosis, but was very close to someone with endometriosis. What I have since learned is what I feel is important to share with the world.
Endometriosis occurs in 10% of women. Everyone in this world knows at least 10 women, which means that it is extremely likely that everyone in this world knows someone with endometriosis. I mentioned earlier that no one close to me has endometriosis. The fallacy in that statement is that it is statistically more likely that someone close to me does have endometriosis, I am just not aware of the diagnosis. This should be a HUGE sign of how important it is to talk about endometriosis. This is affecting our mothers, our sisters, our wives, our daughters and it is extremely common.
This brings me to the next problem with endometriosis. The most obvious sign of endometriosis is pain. The women I mentioned a few sentences ago are suffering in pain and at least once a week a patient will come to the office and say that she had been told that her painful periods are normal. First off. THAT IS NOT NORMAL! I can’t stress that enough. Pain with sex IS NOT NORMAL. The average time to diagnosis of endometriosis is nine to ten years. That’s many years of suffering, while being told it’s normal. That is not ok. What can be easily assumed is that if a man had so much pain every month that they’d crawl up in a ball, spend all day in bed, miss work, school, etc., it would not be regarded as normal. If a man had extreme pain during sex, it would not be regarded as normal. We should not accept any of this as normal.
If you are still not convinced and feel pain is subjective, the other main concern for endometriosis is fertility and those with endometriosis can struggle to get pregnant. Not every woman with endometriosis wants to get pregnant but for those that do, the disease can make it very challenging. These families deserve to be heard and deserve help. One patient taught me that if I put endometriosis as a diagnosis, insurance companies will reject any requests and claim it as infertility. That is not ok. Physicians and patients need to fight this practice so those who do desire pregnancy, can get the treatment they need and deserve.
This then leads me to treatment. Although there are multiple options for treatment, physicians need to counsel appropriately on all these options and patients need to empower themselves with knowledge about the treatment options so they can make the decision that is best for them. Treatment options range from NSAIDs to surgery.
NSAIDs can decrease inflammation in the body and help some tolerate the pain with endometriosis. If they aren’t effective for some that doesn’t make that patient weak, that means there needs to be more done to help her. Other ways to reduce inflammation would be improving diet and avoiding processed/inflammatory foods.
Birth control is an option for patients as well. Sometimes suppression of the reproductive cycle can help reduce the pain patients experience. It can suppress the abnormally located endometrial tissue. It is not wrong to offer this to patients, although they need to be aware that hormones don’t get rid of the disease, but act to keep it from flaring up. It also isn’t wrong for patients to not want to use any form of birth control. This needs to be a discussion between patients and providers.
There are newer (and older) medications available and although they have some promising results regarding pain, they come with side effects that may not be appropriate or worth the risk for some patients and comprehensive counseling regarding these medications should be completed before starting.
Lastly comes surgery for management. Surgery can provide significant benefit for patients with typically minimal risk. Previously mentioned medical options can help mask symptoms of endometriosis and help with pain. They may be a good option for some but very rarely do those medical options actually help cure the disease. This is where surgery comes in. Although it may not be necessary for all, it should still be discussed as an option. If you think of endometriosis like a cancer, yes there are medical options that can help, but at this point in our knowledge of endometriosis, the best way to get rid of the disease is to cut it out. Especially before it becomes more widespread and more difficult to manage. There is some debate over this course but some of the top endometriosis surgeons have shown excellent results with skilled, optimal excision of all the disease.
This leads to a more in-depth surgical discussion. There are two main types of surgery performed, excision and ablation. Ablation surgery is easier to perform and requires less skill. This also was the way early teaching of endometriosis surgery was performed. The concern with ablation is it’s only treating surface disease and for patients with deeper, more involved disease, ablation is ineffective. A recent meta-analysis demonstrated superiority of excision.
The problem with excision is it can be difficult and many surgeons aren’t trained or lack the skill to provide effective excision. Luckily, that fellowship trained surgeon that joined our residency had learned these skills and knowledge and passed them onto myself and my co-residents.
I have over the past 10 years witnessed first-hand the benefits taught to me by that surgeon and improved my skill with excision surgery through fellowship and my early career. Thus, I have focused a significant amount of my practice on taking care of patients with endometriosis and spend every week training future young physicians the skills and knowledge imparted on me early in my career.
My hope is that we can continue to change the narrative around endometriosis. We can start talking to our loved ones who are suffering and give them options and hope. Let’s spend March spreading knowledge and hope to our mothers, sisters, daughters and wives. Pain is not normal.
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