Hot tips and recommendations from experienced patients
Facing endometriosis surgery can be an overwhelming experience, but remember, you're not alone on this journey. With 176M endometriosis patients worldwide, there are thousands going through surgery every year.
In this extensive guide, we'll walk you through the steps to prepare for your surgery and the healing process that follows, offering insights, tips, product recommendations, and support to help you through every stage.
Find the Right Surgeon
Finding the right surgeon is like finding a trusted ally in your battle against endometriosis. If your surgery isn't an emergency, take the time to research and choose the right specialist.
While imaging solutions for endometriosis are still unreliable, many surgeons will order an MRI scan to try and prepare for what’s inside. The new MRI machines (T3 and up) are better at detecting deep endometriosis, and this is an excellent opportunity for surgeons to try and find out if they might need help from another specialist.
Tiffany, who underwent endometriosis surgery, shares her story: "I asked fellow endometriosis warriors for recommendations, and I found an incredible surgeon who finally listened to me, and understood my condition inside and out. My MRI showed endometriosis on the colon and ureter, so my surgeon had two other colleagues standing by in case she needed help. I felt so safe and confident going in… I knew I was in the right hands. Don't hesitate to reach out to support groups; they can be a goldmine of information."
“I wasn’t so lucky,”’ shares Jane, “I went with the wrong doctor, trying to “prove” my ob/gyn that I was right and I did have endometriosis. He found nothing. I was devastated… but when I took my surgery pictures to a specialist, he diagnosed me with endometriosis in his office, and showed me all the endo spots the first surgeon missed”.
Having a surgeon experienced in endometriosis can make a significant difference in your outcome. It's essential to feel confident in your choice.
Understand Your Surgery Options
It’s common to hear questions like “I’m having a lap in X days - how should I prepare?” - as a first step, it’s important to remember that “Lap” is short for “Laparoscopic procedure”, sometimes also referred to as “keyhole surgery”. This means your surgeon will make very minimal cuts, only enough to push a long tube in. In other words, “Lap” is just HOW they get in, not a description of WHAT is planned on being done.
Exploratory Surgery
This is usually offered by OB/GYNs who are not trained endometriosis specialists. They’re usually the doctors spending most of their time in office, but they care deeply and want to help, so they might offer exploration surgery to “see what’s happening”.
Pro: this might be a doctor you have known for a while, so your initial thought might be: “I trust this doctor”.
Cons: when it comes to surgery, you want someone who’s trained and highly experienced. Most surgeons choose this field in medicine because they love the operating room and wish to spend most of their time there, fixing problems. That’s the kind of person you want to operate on you.
In addition, “exploratory” defines the outcome in advance: we will find out and tell you, but do nothing. With endometriosis, there’s currently no other way to remove lesions but the surgical option. So while they’re at it - the issue should be handled.
Ablation
This is an outdated treatment for endometriosis: burning off the edge of a lesion. This method was proven to cause more harm than good, due to extensive scar tissue forming over the burned lesions, and the lesions coming back under the scar tissue because the root is still in.
This procedure was introduced in the 50s, and hasn’t been updated since. If a surgeon you’re chatting with says they “might do some ablation and some excision,” you might wanna keep looking for an educated surgeon who keeps up to date with recent research.
Excision
This is the current golden standard for handling deep endometriosis lesions. Excision cuts out the lesion with its root, minimizing the chance of it growing again in the exact location.
You should aim for an excision on your first surgery. Going with an excision specialist guarantees that, and increases the chance of all lesions being removed on the first try.
Unfortunately, there’s no guarantee that other lesions will not grow in other places, but thorough excision specialists have a much lower rate of returning cases.
Understanding the specifics of your surgery can help alleviate anxiety, trust your decision, and ensure you know what to expect.
Mental Preparation for Surgery
Preparing mentally is crucial for a successful surgery and recovery. One of the most complex parts is accepting that your surgery will require a temporary break from your daily life. This is why we created The ultimate Surgery Guide.
Michelle shares her advice: "I had to accept that I'd need help with daily tasks for a few days. Not talking about cooking or taking care of the toddlers - the real basic stuff like getting up from the bed/couch and going to the bathroom, showering, or putting on clothes. My friends and family stepped in, and it made all the difference in the world. Don't be afraid to lean on your support system. Think about it this way: how would YOU help if you were the friend? This is how they feel about you as well".
On a more technical level, it’s important to prepare for an “OFF” time - if you’re the doer type who keeps on moving and doing and accomplishing things, being in bed and doing nothing for 2-3 weeks could be a huge challenge. Preparing mentally for this time off is going to be helpful when you focus on healing and watching TV for a while.
Endometriosis surgery can be emotionally and technically challenging, but surrounding yourself with a strong support network can provide comfort and encouragement.
Prepare for the Healing Process
Recovery from excision surgery to remove endometriosis is a personal journey filled with ups and downs. Depending on what’s done, the expected time to full recovery might be up to 12 months (!) - obviously, this is the full recovery we’re talking about, but it means that until then, things could also get better. It is NEVER linear, so don’t expect linear progress or a quick fix. Be prepared for some challenges over time, especially during the initial stages. Check out our detailed article for Recovery tips and tricks from the worldwide community.
Lisa, who experienced this firsthand, says, "I went in expecting a week in bed and only took one week off work. I was very wrong... I had stage 4 endo removed from multiple places, and by the end of week 2 I could barely move around without help. I took 3 weeks off work, and even that was hard for me when I needed to return to the office and sit by the computer all day. My best advice would be to prepare for the worst and be patient with yourself. Trying to rush your healing is not going to work, and the stress could actually make you heal slower”.
Remember that every patient's recovery is unique, and healing takes time. Don't be discouraged by setbacks; focus on progress.
Returning to Your Life
Getting back to your daily routine, work, workouts, and intimacy should be a gradual process, and It’s important to remember that your body's healing process is unique to you."I was eager to return to my everyday life, but I learned to listen to my body. It's essential to communicate with your brain and body and avoid “punishing” yourself on days you’re not feeling well. Keep in touch with your healthcare team and adjust your timeline as needed."
Your healthcare team will provide guidance on when it's safe to resume various activities like showering, lifting heavy items, being intimate, eating habits and more. Make sure to ask about it before you’re discharged.
To summarize,
Choosing the right specialist, mental and physical preparation, and understanding the journey ahead are the best gifts you can give yourself when facing endometriosis diagnosis process. We've all been through this, you're not alone. There's a community of support ready to help you every step of the way!
