Come along on this journey- as I speak the unspeakable.
The first thing my nurse navigator said after she told me “you have cancer” is “don’t google it.” I clung to that piece advice. I preached it as the gospel. I had my medical team. I trusted my team. No googling.
But then… I crossed the “finish line.” Hospitals billed their surgeries (double mastectomy, reconstruction, and oophorectomy) and pharmaceuticals billed their meds (TC chemo and tamoxifen). I found myself in a wasteland of continued medical needs and lack of insurance coverage. I don’t blame the doctors- hate the game not the player, amirite?
Nevertheless, as I approach my 40th birthday, I am served a plate of menopause with a side of vaginal atrophy.
So, I did what I said I wouldn’t do. I opened my laptop and did all the googling.
Most of the sites spoke to women in their 50’s and 60’s. Most touted estrogen pills, creams, suppositories, or natural supplements mimicking the effects of estrogen. Welp- not an option for this estrogen positive breast cancer thriver.
When I did find information about women in my particular predicament… the message was dire. Sorry hunny. At least you’re still alive. Suck it up. Move along.
I refused to accept this doomsday scenario. I refused to make a Sophie’s Choice between adding estrogen into my system or having a vagina that drys up like a fall leaf. Nope, not me. This girls vagina is staying coniferous.
So, I turned to my breast cancer village. I put out an SOS on all of my breast cancer Facebook groups posing this conundrum. And I have to say, this vagina monologue was not looking like it had a happy ending.
People echoed my concerns. And you may be thinking, okay- just don’t have sex. Not a big deal. And PS- if this were about wieners, the insurance industry would be ALL OVER it.
But- what I have heard from the community is that vaginal atrophy has way more implications. There are far reaching consequences.
Here are some of the experiences:
“I recently had a Pap smear and I could barely get through it because of the atrophy. I find gynecological exams and procedures horrifically painful to where I avoid them.”
“I am having a very awful time with it. I got so dry the skin cracked and I had constant UTIs. My life is so limited because I have to always be near the toilet.”
“I was only 30 and the vaginal atrophy was causing mild incontinence and my intimate life was extremely painful so it’s was very disheartening and quality of life/marriage was bad.”
“This issue has been so upsetting. I had a breakdown. My mental health has really suffered. It has ruined my quality of life and my marriage.”
Yep. I think I hit a nerve. The chorus was sounding a universal refrain. Nobody is talking about this. Doctors won’t (or don’t know how to) help. People in power don’t think it’s a big deal. But we know… it’s a big deal.