Last updated: February 2023
When you think of endometriosis symptoms, you probably think of heavy periods, excess bleeding, pelvic pain, and maybe infertility. While these symptoms do affect most people with endometriosis, for some, they are just the beginning. Endometriosis can also cause many surprising symptoms, such as leg pain, hip pain, bowel and bladder problems, and pain with sex.1-4
To further recognize Endometriosis Awareness Month, we asked our Endometriosis.net health leaders, “What endo symptoms have been the most surprising, or unexpected?" Check out what they had to say:
I was most surprised (after my laparoscopy surgery) with what it felt like to experience a normal period. It made me realize how much I was downplaying the symptoms for so long. A normal period shouldn’t make you feel nauseous or that you could pass out at any moment.
I was put into a medical menopause at 17 because they had no other way to attempt to control my endometriosis ... Nobody warned me that I would have gray hair in my 20s because of it! They also did not warn me that, after 10 years, my body would become resistant to my treatment plan and it would stop working. I have been surprised that new doctors worry more about trying to freeze my eggs to possibly encourage me to have kids one day, instead of worrying about what is going on in my body now. It is also extremely surprising how exhausting this type of pain is on a person.
For me, having thoracic endometriosis was by far the craziest part of my endo story. Having trouble breathing and chest pain due to a reproductive disease was completely surprising and terrifying. I wish there was more information about it and surgeons that are confident treating that form of the disease, but again, definitely the most unexpected symptoms.
I really didn't expect my symptoms to change so much as I age. I've had several month spans where my symptoms are minimal, then the symptoms come back for months at full force. It also took me a while to realize that some gastrointestinal issues could be caused by endo.
It’s almost hard to say, as I’ve now lived with them so long, but the fatigue, brain fog, and host of inflammation issues have certainly been unexpected and difficult to live with. My body seems to deal with so much in the way of inflammation – achy joints, inflammatory skin disorders, etc. When my endo is really bad (which it hasn’t been for a year or two now), all those issues surface with it. Another one that probably still needs more investigation is the issue with allergies and intolerances.
Because I have been living with endometriosis for years without a diagnosis, all of my symptoms are part of my life. What was unexpected was getting an explanation for all of them, like my chronic fatigue. I never thought that being tired all the time could be down to something physical, I really thought I was the laziest, most unmotivated person on the planet. I thought it was part of being depressed. Another thing I didn't expect was to develop potentially problematic scar tissue from surgery. I now experience pelvic pain and it could be due to scar tissue or more endometriosis.
I had what I thought was recurrent UTIs [urinary tract infections] for years. Even if I didn’t have an infection, my doctor would give me antibiotics “just in case.” I later found out it was just inflammation probably caused by my endometriosis and that sex could irritate the bladder and make it feel like a UTI. When I stopped dousing myself with medicine and avoided deep penetration at problematic times, it got better. My overreaction to food is also something I didn’t expect. It’s just as problematic as having painful sex, and has only gotten worse with age. I also developed migraines and allergies. Thankfully, adjusting my diet and getting prescription medications (for headaches and allergies) have helped.
The constant fatigue. No matter how much I sleep, I am exhausted. And it's hard to accept it when doctors are telling me blood levels and everything else is perfectly normal. Another symptom I was not expecting was shortness of breath. How in the world can a 30-year-old be winded going up the stairs? Dizzy spells are another symptom I find surprising.
The pain that spreads down the legs. As I get older, my period now makes me feel flu-ish the day before and first day. Everything aches, not just my abdomen.
For many years, my stage of endometriosis didn't correlate to my symptoms. I had stage 4 endometriosis but I didn't have the debilitating symptoms you would think should go along with this. This surprised me, but then I learnt that stages of endometriosis often does not correlate with symptoms such as pain.
Have you experienced any surprising symptoms? Comment below, or click here to share your story.
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