Written by Kate Hollowood
If you have endometriosis, you may have heard of endometriosis surgery. But what different types of surgery are there, what can each involve, and which is right for you? This guide will give you the lowdown.
But first, here’s some background: As you may already be aware, shockingly, it can take on average anywhere between 5 and 12 years to get an endometriosis diagnosis. This is because symptoms are often dismissed as ordinary period cramps — something that we just have to deal with.
Endometriosis is when cells that are very similar to the ones usually seen in the uterus grow elsewhere in the body. Common places for these cells to grow include the ovaries, outer uterine walls, and uterine tubes, but they can also extend farther than that. Their presence can cause pain and discomfort because they may bleed and swell, just as the lining inside of your uterus does during a period.
Health care professionals ignoring complaints and symptoms aren’t the only drivers behind the delay in endometriosis diagnosis. Detecting endometriosis through MRI or ultrasound images requires radiologists with a certain level of expertise, and unfortunately there is a shortage of people trained in this area, explains Samir Babayev, MD, senior associate consultant at the Mayo Clinic.
“This means that often, surgery is the gold standard for diagnosing endometriosis,” says Dr. Babayev. “It’s an invasive way to diagnose a condition, and that can cause the delay of an individual’s diagnosis.”
The good news is that along with diagnosing the disease, endometriosis surgery is also a form of treatment.
In a nutshell, endometriosis surgery involves removing endometriosis lesions and sometimes the tissues and organs affected by it. In many cases, this can improve symptoms and significantly reduce pain.
If you’re trying to get pregnant or thinking of starting a family one day, you’ll be pleased to hear that endometriosis surgery can also improve your fertility. “With endometriosis, you often have high levels of inflammation that scar tissue has built up,” says Warren Jay Huber III, MD, PhD. “The surgery can restore the normal relationships between the ovaries, the fallopian [uterine] tubes, and the uterus, which is especially important for patients who are looking to try to conceive.”
If you’re thinking of having endometriosis surgery, you have a few different options. Choosing which one is best for you is a personal decision, and your health care professional should be happy to discuss the different factors to consider. There are broadly two different endometriosis surgery types, ranging from less invasive, or “conservative,” to more complex procedures.
“The type of surgery we do will depend on where the patient is in their life and symptoms,” says Dr. Babayev. “If fertility is an important priority for the patient, then we’d go with the more conservative option. If they are not interested in future fertility and would like to minimize chances of needing another surgery, then we’d go with a more radical approach.”
After discussing the different options with your health care professional, Dr. Babayev advises always getting a second opinion. “Medicine is at least 50% art, and it’s important to consider options and hear multiple opinions,” he says.
Now we’ll break down the different types of endometriosis surgery in more detail to give you an overview of your options
You may have heard of laparoscopic or “keyhole” surgery before. In this noninvasive surgery, also known as a “conservative” procedure, a surgeon will make little cuts in the stomach or pelvis. They'll then use a laparoscope (a small tube with a light and camera) to look inside the area.
Laparoscopic surgery is a tool doctors mainly use to diagnose endometriosis. But at the same time, they might also remove any of the endometriosis lesions they find by burning them off (known as fulguration) or cutting them out (excision). This type of surgery is a good option if you’re planning to start a family because the goal is to preserve your reproductive organs.
Lots of people who think they might have endometriosis opt for keyhole surgery in the hope of a diagnosis. Lowri is one of them. After 17 years of symptoms, including pain that radiated from her waist to her knees, she finally got her endometriosis diagnosis just before her 31st birthday.
“You go in doubting yourself,” Lowri, who is now 36, tells Flo. She pushed her doctor to schedule a laparoscopy for her after reading an article about endometriosis. “I had this feeling that I’d wake up and they’d say, ‘There’s nothing in there,’” she says. “So actually, when I woke up and the doctor said I had quite extensive endometriosis over one side of my pelvis — and they’d burned it all off — I was really happy.”
A laparoscopy doesn’t always have long-lasting effects, especially if some endometriosis tissue is left behind. In that case, your health care provider might consider slightly more complex surgery. This surgery is also intended to protect your reproductive organs but looks to remove your endometriosis wherever it is visible, which could mean removing tissue from organs like the bladder, urinary tract, or bowel.
Unlike keyhole surgery, where you only need one surgeon, you may need to have more doctors present in some cases. As Dr. Babayev explains, “There are a number of patients who require treatment for deep endometriosis, and this usually requires a multidisciplinary team of surgeons” who specialize in those areas.
After two conservative surgeries, Lowri found out she needed this more complex fertility-sparing procedure. “They had to shave a bit near my rectum and put two metal clips in my bowel,” Lowri says. “I was in surgery for six and a half hours, and it went amazingly well. Technically, that day I was clear of all visible endometriosis.” This kind of procedure might sound quite daunting, but patients who undergo it have decided it’s the best option for them and their disease longer term.
Definitive endometriosis surgery, sometimes referred to as “radical” surgery, involves removing the uterus, uterine tubes, and sometimes the ovaries, too. This surgery can also be called a “hysterectomy” and is more common in people who have severe endometriosis (stage 4). If your ovaries are removed during a hysterectomy, you may be offered hormone replacement therapy afterward.
The idea behind definitive surgery is that by removing the source organs of endometriosis, you’re removing the underlying cause of the disease and therefore reducing your chances of needing surgery again.
After four conservative surgeries over a period of 10 years, Rosie, now 41, decided to have her uterus, ovaries, and cervix removed in 2020. Rosie always thought she’d have children, but the right moment and relationship never aligned. Then she met her current partner, who is older than her and didn’t want any more kids.
“It’s natural to have a few moments and think, ‘This is huge. This is irreversible.’ But the surgery was the right thing to do,” says Rosie. “I’d known for some time that it was my best chance of being pain free in the longer term. Yes, there is pain after surgery. But it’s short term. It’s going to go away.”
“I never dared hope that the surgery would help to the extent it has”
After a slow recovery, which took around seven weeks, Rosie started to feel the best she’d felt in a long time. “I still get occasional bits of pain, but it’s not a fraction of what it was before. I've also got a mobility in my lower back that I can't remember having for years. Because I was quite happy that children weren’t going to happen for me — I’d dealt with that for quite some time before the surgery — I didn’t think about it too much afterwards. I’m still a woman. Just because those bits aren’t in my body, I am still me.”
Endometriosis surgery recovery will vary depending on the type of procedure you choose. “If there are only a few spots of endometriosis, the recovery is going to be pretty straightforward. In five to seven days, the patient should be up and moving,” says Dr. Huber. In fact, the earlier a patient gets moving after surgery, the better it could be for their recovery.
For more radical surgery like Rosie’s, your recovery time could take four to six weeks or more. Rosie was also in the hospital for two nights before she was able to come home. Her doctor signed her off work for four weeks, but six weeks is usually deemed standard so her boss extended her sick leave by a further two weeks.
Rosie couldn’t lie down comfortably for around 10 days and found it difficult to stand up or be on her feet for too long. She also couldn’t lift anything heavy. The first couple of weeks were difficult, but then things started to slowly improve, and she began to feel better than ever.
After conservative surgery, if endometriosis grows back, it usually does so within five years, explains Dr. Babayev. Endometriosis-related pelvic pain also comes back in about a third of these patients, he says.
But even with the most radical surgeries, it’s vital for you to know that endometriosis surgery is not a cure. “Although the more radical the surgery, the more likely the patient won’t need further surgery, patients might need treatments and interventions later on,” Dr. Babayev adds.
This is because even if you have your uterus and ovaries removed, there might still be microscopic amounts of the disease present (although the chance of recurrence in this instance is very low, at less than 5%). Plus, there’s always a risk that surgery will cause scarring, which can lead to other problems.
Rosie was aware of all this but still decided that radical endometriosis surgery was worth it. “I thought, even if I still have some problems, but there is a bit less pain, that’d still be better,” she says. “I never dared hope it would be this much better, that the surgery would have helped to the extent it has.”
Having any kind of surgery can be a scary decision to make. Thankfully, there are endometriosis support groups and organizations all over the world that can offer you advice, such as Endometriosis Association, which is available globally, Endometriosis Foundation of America, and Endometriosis UK. Whether surgery is right for you is a hugely personal decision, but know that there are options out there besides simply putting up with your pain.
If you believe you might have endometriosis but haven’t yet received a diagnosis, try tracking your symptoms with an app like Flo and make sure to schedule an appointment with a health care provider. That’s the first step to easing and managing your symptoms, because you shouldn’t have to just live with it.