MRI for Deep Infiltrating Endometriosis: What to Expect

When I first started this blog, I wrote a blog post about my upper endoscopy, which was a big hit with my readers. As a patient, it can be difficult to know what to expect from a procedure you’ve never had before. Many people turn to hospital websites and clinical YouTube demonstrations for answers, but these do little to assuage the anxiety about the procedure.

What always helps me is hearing from someone who’s been through it themself — which is why I’m taking the time to write about my MRI experience as an endometriosis patient. As of right now, laparoscopy is the only way to definitively diagnose endometriosis. However, a doctor might recommend an MRI if they suspect deep infiltrating endometriosis (DIE), a form of endometriosis where the endo implants deeply penetrate the healthy layer of tissue beneath.

An MRI can help doctors determine the location of endo implants to help plan for laparoscopic surgery. Because laparoscopy is both a diagnostic tool and a treatment, locating lesions ahead of time allows your surgeon to prepare, rather than flying blind. Cases of DIE are also more complex than the more common type of endometriosis, which is confined to the first 5 mm of tissue. Surgery for DIE may require careful planning. If the endo implants infiltrate nearby organs like the colon or the ureters, specialized surgeons may need to be brought in to consult on the best way to approach treatment.

Before my MRI, I had a lot of questions about what to expect. My questions weren’t just about the procedure, though — I also wanted to know what my MRI would tell my doctors about my endometriosis. After all, women are already questioned and oppressed in the medical system. I needed to learn everything I could so I could be my own best advocate for my care. At the end of the day, you know your body best, so if you’re certain something’s wrong, it’s important to keep pushing for answers.

MRI and Endometriosis

First, let’s talk about the role of MRI in diagnosing endometriosis. MRI on its own is not a diagnostic tool. The only definitive way to diagnose endometriosis is via diagnostic laparoscopy, a minimally invasive surgical procedure (known as “keyhole surgery”) in which a camera and surgical instruments can be inserted into the body through small incisions in the lower abdomen.

So, why might a doctor order an MRI for suspected endometriosis? MRI is reliable in diagnosing DIE, when endo implants exceed 5 mm in depth. DIE is found in about 20 percent of patients with endometriosis. As we mentioned previously, knowing whether or not to expect DIE — and where the DIE is located — helps your doctor prepare for surgery. MRI is also much less invasive than laparoscopic surgery, so if your endometriosis symptoms are mild, you may have an MRI and choose to hold off on surgery in the meantime.

MRI isn’t always a good choice for patients with chronic pelvic pain. When endometriosis isn’t strongly suspected, it may be ineffective, since it’s poor at identifying other causes of pelvic pain. In one study, more than half of women with chronic pelvic pain were diagnosed with unknown, or “idiopathic,” pelvic pain after a diagnostic MRI. 42 percent of patients in this study whose MRI results suggested a diagnostic laparoscopy wasn’t necessary would have benefitted from them.

MRI can reliably diagnose DIE, but falls short in identifying superficial endometriosis. (Despite this name, it’s important to remember that the depth of endometriosis lesions does not correlate with the severity of the patient’s pain.) Superficial endometriosis accounts for 80 percent of patients with the disease, making laparoscopy an essential procedure to officially diagnose or rule out endometriosis. MRI also fails to identify pelvic adhesions, or scarring, in roughly 80 percent of patients.

MRI produces few false positives, but many false negatives. As a result, many women who need care might be denied it after having a diagnostic MRI that fails to show evidence of DIE. However, MRI is superior to other forms of imaging in detecting endometriosis. Transvaginal ultrasound used to be a common tool to diagnose endometriosis, but is less effective than MRI in identifying indeterminate pelvic masses and detecting rectosigmoid endometriosis and endometriosis of the bladder. This is important, because some of the signs of endometriosis — such as irregular bleeding — overlap with those of uterine cancer. In some cases, an “indeterminate mass” may actually be a tumor, rather than an endometrial implant. Because ultrasounds are cheaper than MRIs, however, your doctor might still suggest you have an ultrasound before proceeding to MRI.

There’s only one case where MRI is superior to laparoscopy in diagnosing endometrial disease: adenomyosis. Adenomyosis is a form of endometriosis in which endometrial tissue grows into the muscle wall of the uterus. Because it exclusively affects the uterine wall and can only be seen deep inside the musculature, MRI is superior to the naked eye in detecting adenomyosis. If your symptoms suggest adenomyosis instead of or in addition to endometriosis, your doctor may suggest an MRI to rule it out.

How MRI Works

MRI stands for “magnetic resonance imaging” and uses a strong magnetic field to attract positively-charged protons in the body. In combination with different levels of radio waves, these magnetic forces produce distinct signals used to identify different pathology (or lack of pathology) in medicine.

Soft tissues like muscles, ligaments, and tendons, as opposed to bones, are well-seen on MRI. Different levels of magnetism are used to produce different images, as some organs are best seen at certain intensities. Alternatives to MRI include ultrasound and CT scans. We already explained ultrasound; as for CT scans, they aren’t generally used in the diagnosis of endometriosis and result in exposure to radiation that can become dangerous over time.

Almost anyone can safely undergo MRI. Because of the strong magnetic field used in MRI, however, people with metal implants — such as pacemakers or artificial joints — cannot have an MRI scan. People who are claustrophobic may also find MRI uncomfortable, since the scanner is a small, enclosed space. These people might opt for transvaginal ultrasound instead.

My MRI Experience

When I arrived for my MRI at the Cleveland Clinic’s main campus in downtown Cleveland, I was alone. After checking in with the receptionist, I was ushered into a separate waiting room, where I was the only patient. Another staff member spoke with me about the potential risks of the procedure, checking to make sure I hadn’t had any recent tattoos and that I had removed any metal piercings before leading me into the back to change.

During my MRI scan, I did not wear anything but a hospital gown and special matching pants. These pants were worn in the waiting room, but not during the procedure. I expect pants and underwear would have obscured the imaging, and they would have made it difficult to prepare for the next part of the procedure. After changing, I was ushered into a waiting room with several other patients, each having an MRI for a different reason. Then, finally, it was my turn.

I met with the woman operating the MRI equipment briefly before she took me into the room with the MRI machine. I took off the hospital pants and settled onto a cushioned platform, which slides into the MRI machine during imaging. She helped me get comfortable with pillows and a sheet, and provided me with two syringes of surgical lube to insert into my vagina once she left. This is supposed to help the radiologist see the vagina better in the MRI scan.

Once the radiologist left, I inserted the surgical lube. The radiologist communicated with me over a special microphone while in the other room. After I told her I was ready, she came back to adjust the magnetic plates on the machine above and below my pelvis while I lay back on the platform. This felt heavy, hard, and warm, but not painful or uncomfortable. She also gave me headphones to wear while the machine was running.

When the radiologist left and started the MRI machine, the first thing I noticed was how loud the machine was. The MRI machine makes loud banging, spinning, and clacking noises, which I admit made me feel a little nervous. If they are still loud with special soundproof headphones, I shudder to think how loud it would be without them! But the worst part was when the platform slid into the machine. The last thing she did was insert an IV tube, through which contrast would be pumped later in the scan.

Like a CT scanner, an MRI machine looks like a big tube — but instead of being a small section of a tube like modern CT scanners, it’s much longer. When you’re inside it, it feels much smaller than it looks. My heart began to race with anxiety as I began to feel the claustrophobia, but I used breathing techniques from therapy to soothe myself. I closed my eyes, focused on my breathing, and tried to relax.

The MRI itself was long — about 45 minutes of sliding back and forth in the machine, being asked to hold your breath and then exhale while the machine took pictures — which gave me plenty of time to get used to it. By the end, I wasn’t nearly as shaken as I was at the beginning of the procedure. Unfortunately, the anxiety had given way to boredom by then. If it hadn’t been so loud, I might have fallen asleep — but all I could do during the MRI was think about the small space I was in and focus on my breath. I was the radiologist’s last procedure of the day, so that might be why she didn’t play music or talk to me much during my MRI.

More than halfway through the scan, the radiologist pressed a button, allowing her to remotely inject contrast through my IV. By then, the scan was, thankfully, almost over. She only had to take a few more pictures using the contrast. Best of all, unlike the contrast used during a CT scan, it doesn’t make you feel warm or like you’re “wetting yourself.” It just feels like a normal IV.

At the end, the radiologist gave me plenty of cleansing wipes (an entire package, actually) to help me clean up the 11 mL of lube I’d had to inject before the procedure. She showed me where to retrieve my clothes and a bathroom where I could change and clean up in private. This is almost certainly TMI, but even with a thorough wiping, I still had lube dripping out until basically the next morning. It made the drive home a bit uncomfortable, to say the least — but the radiologist did offer me a couple of thick menstrual pads to help absorb some of the flow. After cleaning up, I was free to go.

I got my MRI results about two weeks later. There was a slight delay due to the fact that my MRI had been just before the New Year’s holiday and fell on a Friday. At long last, I learned from my doctor that my MRI showed no signs of DIE. Its only remarkable finding was that I had several ovarian cysts and a retroverted uterus.

My feelings upon learning this were mixed. I felt relieved that my surgery would likely not be complicated or result in bowel resectioning (my doctor previously suspected I might have bowel endo), yet disappointed that they hadn’t found anything to validate my suspected diagnosis. My doctors reassured me that they still believed I had endo and that surgery was worthwhile, but the words “no evidence of endometriosis,” written on the top of my MRI results, continue to dance through my head even today.

By now, the emotional rollercoaster of endometriosis is probably familiar to you. I can’t promise your MRI won’t bring up these uncomfortable feelings, but I can promise you that it’s not as scary as it seems.

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