Here it is. My soapbox. If you’re not into speaking up for your own health, nitty gritty details about lady bits, my life, surgeries, and healing process stop reading now. Seriously. If you don’t want hard truths and you need to keep your rose-colored glasses on about me, please don’t advance through this post. I won’t hate you or even care if you don’t wanna know. Just know that I was out of work for about 4 weeks and I’ll be back soon smiling and laughing and that’s all.
It took a LOT for me to decide to post this on my own blog instead of a healthcare site, but if I’m not honest with my camp family, who can I be honest with?
In all reality, I wish that was it.
Since I was 19 I have had issues with my reproductive health. I was diagnosed with Polycystic Ovary Syndrome (PCOS) and would have periods that lasted for multiple weeks to months. Along with this syndrome came slight insulin resistance and substantial weight gain, despite close attention paid to my diet and exercise. I moved around a lot, and always looked up an OB-GYN who had experience with the diagnosis in order to have good healthcare.
Experience does not equal listening. For 14 years, I saw doctors who excused my excessive bleeding as a result of being overweight. They told me to exercise more. I did. They told me to eat organic. I did. They put me on hormone therapies and food regimens and I fully committed. I am really good at being a model patient, so no matter what course of action I was meant to take, I took it. I supplemented these with Clary Sage and other essential oils, eliminating soy from my diet (phytoestrogens!) and taking my vitamins diligently. I knew something would give soon, and I would be a “normal” girl. I looked forward to having children despite the predicted difficulties and fantasized about my kiddos going to camp and having some of my favorite campers as counselors.
Fast forward through 5 states of residence, twice as many doctors and nurse practitioners, different health insurance companies, two hurricanes, finding the love of my life and marrying him, and my eventual landing at a beautiful camp, a beautiful life, and a prolonged bout of excessive bleeding that sent me to my primary care physician for help in August, 2015.
After a blood draw, they found that I had a hemoglobin level of 7, which is dangerously low. I was sent to the ER for a gynecology consult and potentially a transfusion. This led me down a rabbit hole of driving hours to get to the doctor and a drug cocktail to stop the bleeding and get my body back on track. I had my first experience with general anesthesia for a D&C (look it up), and thought “Ok, we’re back on track! Babies in the future!”
Then, right before a post-camp meeting, I was told that my D&C results indicated prevalent hyperplasia with atypia, a precancerous condition. I thought back through my family history in the seconds before my doctor said “in most women, I’d recommend a total hysterectomy, but…” and I heard myself interrupting her with “let’s do it.” I walked into a meeting with my 4-H Agents with thoughts of cancer and babies racing through my head, but never once questioned my decision.
On October 22, 2015 I was put under a second time to remove my cervix, uterus, fallopian tubes, and potentially more, depending on frozen samples. Oncology (the cancer people) were on standby, but we didn’t need them during my surgery. I got to keep my ovaries for hormones’ sake! I was out the next day and walking around, happy to be alive. I was antsy to get back to camp, but taking it easy as best I could.
Shout out to all the supporters I had throughout this event! My 4-H family, church family, and actual family and friends held me and let me cry, let me rage in anger, and knocked me in the head when I needed it. Not one person asked “well, what about children?” My decision was supported and endorsed by my husband, and we have a house full of deflating balloons and beautiful plants thanks to the love of others. I also scored some coloring books and visits from sweet people who made me food and swept my living room! I have an excellent set of coworkers and supervisors who endorse me taking time to heal and leaving them lists. I found many other young women like me on the Hyster Sister forums, too.
On November 1, 2015 I received news that my uterus was actually found to be cancerous. There were a few small spots and one large one. I would have to see the gynecologic oncologist, perhaps for further testing, but it appeared all spots were removed! Yay!
On November 7, 2015, just after a show at church, I began to hemorrhage and ended up back in surgery to repair and reinforce some stitches that were jumping ship a little soon. This was scary – blood everywhere, rushing into emergency surgery, and no time to tell anyone to come hold my husband’s hand. We were both scared, and now I’m super limited in activity so it doesn’t happen again.
My most recent appointment with Gynecology Oncology confirmed that I had Stage 1 Uterine Cancer. The hysterectomy was curative, I will be monitored, and I’m officially considered in remission. How weird is that, to think that I had cancer, but had no flipping clue?
So here I am, post-hysto, my husband still loves me, my family still loves me, and my community was not scandalized by issues with the lady bits. We still want children, and as my sister pointed out, our decision to adopt was made for us. I have a team of fierce doctors who listen to me and care about me.
Why did I tell this story? Because I was shamed into thinking my weight was what was wrong with me when it was actually cancer. Because I don’t want this to happen to anyone else. Because, as a youth development professional, what kind of example am I leading for our girls when I give up the fight for health because there is a “lady bits stigma”? Because women and girls need to know:
- Know your body and how it functions! Your body belongs to you, even if you are a minor. Only you can detect when something isn’t right, and you need to say something.
- Make sure you are heard. 14 years of body madness could have been avoided if I’d paid attention and determined whether I was actually being listened to. Work through the embarrassment and find someone who will listen. If your issues are excused as fatness, sluttiness, or “dumb woman” syndrome, find a second opinion.
- Know your family history. Talk to your mother, aunts, grandmothers, sisters, and figure it out. If you can’t, there are tests for certain hereditary cancers and strains of HPV. Talk to your doctor about those tests.
- Treasure your body, your spirit, and your mind. Value yourself enough to fight for the person you love. If you’d do it for your friend, you should be willing to do it for yourself. Taking care of your spirit is just as important as taking care of your body. Do not neglect it!
- Don’t ignore healthcare. For me, that’s a combo of holistic medicine and modern practices. My oils and herbs and tinctures are just as valuable as that scalpel.
- SPREAD THE WORD. Here’s your permission to share my story (but only my story). Talk about scary moments and not scary moments. Fight for all women to have healthcare.
- Don’t ever, ever assume you know what is happening inside a person. I was told by nurses that I must be relieved since I obviously don’t want children. My hand was held by lab techs who thought I was having a miscarriage. Shoot, after my D & C a woman told me she was proud of my choice to have an abortion! What?! I’m glad she supports all women, but that is not what happened! That story belongs to someone else. I was interrogated by people who thought I should be back at work, and I cried a lot knowing we will never have biological children. Partial, alarmist versions of my story were passed around at the same time I was being held and prayed over by others.
My journey is not over. I’m at a weird halfway point on top of the mountain… and that’s OK. I am choosing to wear a peach necklace (peach is the color of the ribbon for uterine/endometrial cancer awareness) to spark conversation with curious people. I could have been healed 14 years ago if I had spoken up until I felt actually heard by one of the many doctors I saw. Instead, I’m on my way to healing now.