Endometriosis is a disorder that affects some people who get periods. When someone has their period, tissue in their uterus (called “endometrial tissue”) fills with blood and then sheds through the vagina. When someone has endometriosis, that tissue grows outside of the uterus too. It can attach itself to other organs and parts of the body. Just like in the uterus, tissue that grows throughout the body changes with the menstrual cycle. Each month, they fill with blood and shed. Since this blood doesn’t leave the body through the vagina, it can lead to severe pain and other issues over time.
Endometriosis affects about 1 in 10 Canadians who get periods. It’s sometimes hard for doctors to diagnose. It’s not contagious, and you can’t give it to or get it from someone else. Doctors aren’t sure, but they think it may be caused by a combination of genetics and the environment you live in.
What are the signs of endometriosis?
The most common sign is pelvic pain, especially before, during, or after a period. It’s low in the stomach and it can feel like period cramps. But it’s much more painful than what’s common or healthy for period cramps. It’s a good idea to talk to a doctor if you suddenly have more pain or you get cramps that are too painful for you to work, move, or stay awake. Some common signs are:
- Lower pelvic pain, especially around a period
- Very heavy and long periods
- Pain when you go to the bathroom
- Needing to pee a lot, or having diarrhea
- Nausea or vomiting
- Pain when you have sex, especially vaginal or anal sex
- Pain when you release an egg
- Feeling feverish during your period
- Infertility (having a hard time getting pregnant)
Minor cramping and discomfort during your period is normal, but these signs aren’t. It is important to see a doctor if you notice these signs. A few different health issues can cause very painful cramps, including endometriosis.
Endometriosis can cause other problems, especially if it isn’t treated at all. It can cause stiffness and pain throughout the body. Joint pain, muscle pain, and anemia can all be caused by endometriosis. It can also affect digestion, and weaken your immune system. This makes it easier to get sick.
What can help endometriosis without a diagnosis?
It can help to see a doctor to get a diagnosis. But, this can sometimes take a while. There are some things that can help whether or not you have one.
For pain that happens during your period, using a hot water bottle or a warm bath to heat up your lower stomach can sometimes help. You can also take painkillers or nausea medication. Doctors may recommend a birth control pill or a hormonal IUD to help keep your periods regular and make them easier.
Some people suggest alternative therapies and lifestyle changes, to help treat endometriosis. Physical therapy, regular exercise, and diet changes are some of these. They might work great for some people, but not for others.
How is endometriosis diagnosed and treated?
It can take a while to get a diagnosis of endometriosis from a doctor. If you think you have it, a doctor can do a pelvic exam. This is where they put gloved fingers inside your vagina to try to feel signs of endometriosis. They might also take a vaginal ultrasound to find some of the signs. If they think the tissue might have spread, they might do other tests like a colonoscopy, endoscopy, or MRI. A doctor can diagnose endometriosis based on tests like these, and on a patient’s symptoms.
To treat endometriosis, a doctor may prescribe progestin. Progestin is a hormone that helps to regulate the menstrual cycle. It can be prescribed as a hormonal birth control, or in non-contraceptive form (also called Visanne). They may also prescribe an NSAID medication for menstruation-related pain.
In some cases, doctors recommend laparoscopic surgery. This is a minor surgery where doctors make small cuts in the lower stomach to take out endometrial and scar tissue. On top of telling them if you have endometriosis, the surgery can make periods easier to deal with.
Going through pregnancy or menopause can also change hormones in helpful ways. In rare cases where other things haven’t worked, doctors might want to stop the menstrual cycle with a hysterectomy. This is when they take out the uterus, and it’s usually a last resort. A hysterectomy starts menopause early, which can also hurt your body in other ways.
Coping with endometriosis
Endometriosis is a chronic disorder. This means it lasts for a long time, shows symptoms regularly, and there’s no cure yet. Coping with it can be frustrating. Pain and other signs can make life harder. You may have trouble doing some of the things you like due to fatigue, pain, or other symptoms.
Sometimes people with chronic disorders have trouble feeling supported. Support groups can be good places to connect with people who might be going through similar things. Doctors, friends, and family can have a hard time understanding pain and other signs that they can’t see.
There can also be some stigma about endometriosis since it’s related to periods. Some people think endometriosis is only a problem when people want to get pregnant. They might not realize that it causes chronic pain and other issues. Others think that most people who menstruate have cramps, so it’s not that big a deal. It’s okay to remind people that that’s not all endometriosis is. Reproductive health is about more than just whether or not you can get pregnant!
It’s important to understand what’s happening in your body and ask for what can help. Whether that’s a little extra time, help with things that are hard, or a few hours with someone when you’re in pain, you’re allowed to ask for what you need!
Lots of people with endometriosis live full, long lives. Anything that causes a lot of pain can be scary, but endometriosis doesn’t have to be!