If there’s one thing I’ve found out about needing a hysterectomy at the age of 33, it’s that as soon as I mentioned that I was scheduled for one, dozens of women privately messaged me saying that they had also had one at a young age. Dozens. I’m talking at least thirty women of all ages reaching out offering me advice, support and sympathy from all over the world. So first off, thank you. Every message calms my nerves a little more as my surgery date gets closer.
So lets get a few things out of the way, I’m going to say words like “cervix” “vaginal” and “pap smear” (I literally cringe at the word smear still). Not normal photography lingo, and not the usual cheery, upbeat post from me. Although, looking through my blog posts, they actually do tend to be a little bit more emotionally charged than what I post on my Facebook fan page! Also, forgive me for not knowing a single proper medical term for most of what I’m about to write about, I’m going to keep all of the medical stuff as short and sweet as possible!
Two years ago, while visiting my friend Kristin in Phoenix, my gynecologist called me with bad pap results. She wasn’t worried, but the results pointed to not just a regular “irregular” pap, but enough that instead of doing a re-pap in a few months, we went straight to a procedure called a colposcopy. Not to be confused with a colonoscopy lol, which is what most people thought I was having when I told them what was going on. A colposcopy is basically taking a few punch samples off of the cervix. Not ridiculously invasive, but uncomfortable, and can tell doctors more than a pap smear. Those results also came back bad. I started hearing words like “aggressive” and “precancerous” when referring to the types of cells popping up in my cervix.
After the colposcopy came back bad, we set up another test, this time something called a LEEP procedure. Where essentially my doctor used a laser to slice off a chunk of my cervix to see how much of it had these precancerous cells. We crammed this in the DAY before I left for Australia this past March, about a year had passed from my first bad pap results so she didn’t want to wait any longer to see what was going on. The results came in while I was already over in Oz, so Nick got the results first. He called me, and I could hear it in his voice, the doctor was officially worried at this point. There were no clear margins, meaning that the big sample that they took from my cervix was completely covered in these precancerous cells and that the edges of the sample had those cells…telling her that the precancerous cells were spreading. These cells were the worst kind of cells to have, the ones that 100% would turn into full blown cervical cancer eventually, and she wanted me back in her office for more tests within 4 months. With my schedule, it ended up being closer to 6 months and we did another pap, this time she tested the top of my cervix, as indicators showed that the precancerous cells were spreading upwards towards my uterus and pelvic wall. Those test results came back fast, yes, the cells were moving up.
Since March, before the LEEP, my doctor had been hinting that a hysterectomy was in my future. We have three beautiful kids and while I definitely wanted more, with the cells spreading, the chance of developing full blown cancer was too much of a risk. Now, with my gynecologist talking about the possibility of referring me to an oncologist depending on the next test results, the hysterectomy wasn’t a hypothetical option, but a very real option and obviously the better outcome when put next to cervical cancer that at this point looked like it could also be spreading to much more difficult areas to operate on. Our next step was something called a cone biopsy, and since we had resigned ourselves to an imminent hysterectomy, my doctor told me she was going to be very aggressive with her biopsy, removing much more of my cervix than a typical cone biopsy. This was outpatient surgery that I had the week before Thanksgiving, and was so lucky to have both my parents, Nick and Nick’s mom and stepdad in town over the next week to let me rest and recover.
The results were back and they were finally GOOD….ish. The best news was that the cells hadn’t turned into cancer, they were still considered “carcinoma in situ” which I’m pretty sure is greek for “you’re not screwed yet”. But it was confirmed that yes, the cells were in my uterus, and they were still the very aggressive/bad precancerous cells. My cervix, uterus, fallopian tubes and possibly ovaries for sure had their days numbered.
So that leads us to now. It’s a lot to process for a 33 year old. Especially one who dreamed of having a baby in her 30’s. Throw in all the emotions of losing something that is part of what makes me a woman. Then the possibility of going through menopause in my 30’s. (My mom had ovarian cancer a few years ago, so this is a risk we’re talking about at my next appointment) ‘m just sad about it. Sad is such a lame word to use, but it’s accurate. Everyone on the other side, women who have had hysterectomies for the same reasons, tell me it’s the best thing ever. I’m just not there yet. Like, I’m being sterilized. Zero chance of ever having another baby, growing a life inside of me. Those years went by way too fast. Nick was done after Josie, our family of five was complete. We fostered, originally hoping to adopt, which thankfully didn’t happen and the boys are where they should be with their parents, but my arms have ached for another baby/child since I had Josie. So this feels very much like the nail in the coffin of my heart’s desire for another baby of my own.
I feel guilty because so many women have a hysterectomy without having children that they want desperately. I know how lucky I am to have my three, but again, I’m. just. sad.
Why in the HECK am I sharing all this? Nick thinks I’m over sharing and crazy, which probably both are true. But honestly? It’s because I’m just floored by how many women have messaged me, it’s like this big secret over half of the population has, which, the side effect of CANCER only affects women when it comes to HPV…99% of cervical cancer is caused by the virus, so like so many women-related things that don’t have to do with us being sexual objects, this topic is hush hush. And I hate that. So if my story, my hysterectomy can make one woman feel a little bit more normal, it’s worth throwing my privacy to the wind. And honestly? I just want to feel normal myself. I hate that I don’t personally know anyone who I can have over and just cry over this with. Nick has been so great taking care of me, but when it comes to the cluster-you-know-what that’s going on in my brain with all of this, I think he’s a little overwhelmed with what to do with the emotional train wreck this has turned his wife into.
So spam me with any and all good vibes, prayers, recovery tips. January 26th is the big date for my total hysterectomy. There are a few what-ifs still, so I’ve waited to open up 2017 family sessions and workshops until all results are back and I’m deemed 100% cancer free and recovery goes to plan. And frankly, dealing with all of this medical craziness has worn me pretty thin while working and juggling our family. One of the result calls came as my clients were arriving to my house for a session back in September. The one where my doctor actually personally called me to tell me that she was worried that the cells had turned into cancer. It took literally everything in me to answer back cheerily, “Okay! Great, well my clients just got here, I’ll call back and schedule something tomorrow!” and then turn on photographer Rachel and get awesome pictures for my clients. Looking back, I’m actually thankful for the distraction immediately after that call because otherwise I probably would have ate a pint of Ben & Jerry’s with a side of wine while reading about cervical cancer on WebMD.
So, if you read all that, I’m sorry that you know more about my cervix than you probably should *insert monkey covering his eyes emoji* but I’ve always been pretty dang transparent with all of you guys, who are more like 230k friends than “fans” in my mind. <3
I cried reading your story. Im 33yrs old.I’m a nurse who works for a women’s health clinic. Never in a million years I thought I was going to be diagnosed with CIN2. Last night I went to sleep blaming my younger years. Then asking the Lord why me? Why when the last few years I haven’t been doing no risky sexual behavior. My mom called me this morning and said just tell them to do a hysterectomy. I’ve one daughter, I’m a single mom. There was some hope, little hope to one day meet someone and have another child. But oh well my question to you is do you think I should just tell the surgeon to skip the LEEP…or aleast wait for the leep results. It is very frustrating because their is a high possibility that the cells will keep spreading or remaind.
1 Comment on hysterectomy