I didn’t know what endometriosis was when I found out I had it. My periods had always been accompanied by intense pelvic pain—a common symptom of the disorder—but growing up, my doctors dismissed it as the usual menstrual cramps.
When my husband and I were having trouble conceiving, though, my reproductive endocrinologist did a surgical diagnostic laparoscopy. He found that I had endometriosis, a disorder in which tissue that normally grows inside the uterus grows outside of it.
It can spread beyond the uterus, and impact the bladder and ureters, like it did for me. It can also make it much harder to get pregnant. The doctor removed the tissue he saw, in hopes that it would ease the pain and help us conceive. Still, I had frustrating fertility problems until my daughter, now 10 years old, was finally born.
Almost as soon as I recovered from my C-section, we tried to conceive again. But despite treatment after treatment, the few successful attempts ended in devastating miscarriages.
Throughout these treatments, my endometriosis symptoms intensified. Meanwhile, it killed me that some days, I was in too much pain to get out of bed to take care of the baby I fought so hard to have.
Conversations with my daughter about my condition started when she was young, probably around 2 years old. “Mummy’s tired. Let’s take a break because Mummy’s not feeling well,” I would tell her when my endometriosis flared up, which usually happened before and during my period.
She came to understand that I needed to rest and take care of myself on difficult days before getting back to playing. When she was around 3, she saw that my stomach had swelled—another common symptom of endometriosis that I often experienced.
When she asked if there was a baby in my belly, I paused, knowing this would be a good opportunity to be open and honest about my menstrual and reproductive health. I told her that there wasn’t going to be a baby in my belly, but that there were things in my belly that caused pain and swelling.
My frequently swollen stomach—which made me look like I was four months pregnant—made me self-conscious. I made sure that although I felt bad about my body some days, and I had negative voices in my head about how my clothes were fitting, I kept the conversation about my body positive, knowing that she was always listening.
In addition to pain that felt like menstrual cramps on steroids before and during my period, I had heavy bleeding, bladder problems, bowel problems, and diarrhea. On top of that, I was completely fatigued.
Some days I could barely keep my eyes open, let alone take my daughter to birthday parties I still remember missing. There were times when she wanted to go to the park, but I couldn’t take her because, I worried, what if I had stomach problems? What if there wasn’t a nearby bathroom? What if I bled so much I felt dizzy?
I knew something had to change, so I had surgery to remove the lesions of endometriosis. That, along with diet changes and pelvic floor therapy, helped my symptoms and improved my quality of life. But there is no cure for the disorder, and I still deal with pain and really heavy periods, which are partially due to the fibroids I’ve also developed.
My daughter and I have talked about endometriosis more as she’s gotten older. I let her lead the way in terms of how much we talk about my disorder—and reproductive health in general.
Rather than sitting down and having one, intense talk, we’ve had several organic conversations. Sometimes they happen when I’m in a lot of pain, other times when we’re driving and she chimes from the back seat, “So what is endometriosis anyway?” We talk candidly about the endometriosis throughout my body and how it makes me feel.
Now that she’s 10, and some of her friends are starting their periods, we’ve talked about menstruation more, too. When I have my period and painful symptoms, I’ll tell her that I have my period, and we’re going to have a low-key day or that we’re going to order in dinner. I think that open dialogue is really important for daughters going through puberty.
Endometriosis is genetic, and I’m not sure what my daughter’s future holds. I try to be careful not to say the lines about menstruation so many of us heard growing up. Phrases like, “Cramps are just a normal part of life!” and “Periods may be painful, but they’re preparing you for motherhood,” have probably contributed to the fact that on average, for a woman to find out she has endometriosis, according to the Endometriosis Foundation of America. We’re told the pain is normal, and it’s just part of being a woman.
But for me, and so many women, periods aren’t natural or normal. And in fact, my periods didn’t prepare my body for motherhood, as I later found out when I struggled with infertility.
That’s why I make sure to give my daughter the facts when we talk about puberty. I try not to talk about periods in relation to motherhood, and I’ve introduced her to many kinds of families, including women who have used donor eggs to conceive and women who have chosen not to have children. I always remind her that she can ask me anything, any time.
After so many years of struggling with endometriosis, I applied the skills I had from my career in social work to be a counsellor and advocate for women who also suffer from the disorder and infertility that often comes with it.
This article originally appeared on Women's Health US