If You're A Guy, This May Be TMI
My physical therapist called yesterday. I had just begun working with her right before stay-at-home orders - in fact, my last session (which was only my second session total) was the last day we were allowed out and about. She wanted to check on me, see how I was doing, ask if I needed her help with anything, and let me know that they’re still there and open and taking every precaution to keep themselves and their patients safe if I wanted to come in. I assured her that I’m doing my at-home exercises every day and plan to schedule another appointment in a few weeks, once things die down a bit; it’s still a little too soon for me to feel comfortable. She understood completely and said we’ll keep in touch throughout May.
At the suggestion and recommendation of both my gynecologist and my medical oncologist, I’ve started pelvic floor therapy. And truth be told, it was after my first session that I made the decision to share the unvarnished reality of life after breast cancer - because this is EXACTLY the kind of thing that no one talks about, no one acknowledges, no one even really thinks about, and that’s the effect of breast cancer and its aftermath on intimate, romantic relationships. So if you’re a guy, you may want to stop reading here, because it’s definitely not sexy. If you choose to keep going, good for you - it can only make you more sympathetic as a partner. But be warned, I make no apologies for what I’m about to discuss.
Pre-BC, I had been diagnosed with a uterine fibroid, and my gynecologist was keeping tabs on it via routine ultrasounds and MRIs. It wasn’t causing any issues, but due to its placement and the fact that it had begun to grow right around the time of my cancer diagnosis, I knew it would have to be dealt with at some point - it was just that RIGHT THAT SECOND wasn’t the best time, go figure. As I was pulling together the family cancer history in advance of my BRCA testing, I learned that there was/is a history of uterine cancer on my mother’s side and of ovarian cancer on my father’s side, which upped the ante for me in fibroid dealings. And after radiation was finished, since I was only perimenopausal at that point, I was put on an aromatase inhibitor called Tamoxifen (Arimidex is prescribed post-menopause). In my research of Tamoxifen and its side effects, I discovered that taking Tamoxifen increased the likelihood of developing uterine cancer.
So - I had a fibroid, I had a personal history of breast cancer which already increased my chances of developing uterine and ovarian cancer, I also had a family history of uterine and ovarian cancer which made those chances worse, and now I was taking a medication that ramped up the odds even MORE. I didn’t like any of this. I shared my concerns with Casey, who agreed with me, and who fully supported my desire for a complete hysterectomy, ovaries and all. I wasn’t using any of that stuff, anyway, so let’s just take it all out and not even have to worry about it. I went to my gynecologist andtold her what I wanted and why, and she also saw the logic in it and referred me to a surgeon. He assured me that I actually didn’t have as much to worry about as I thought I did - the odds weren’t as stacked against me as I figured - but he completely understood my need for peace of mind and therefore had no problems with performing the surgery. On May 2, 2019, I became uterine-less, ovary-less, and fibroid-less, and was taken off Tamoxifen and put on Arimidex.
All problems solved, right? Sure, in terms of preventing further cancer. But this is where we get into the stuff that no one told me.
Physical intimacy between Casey and I was prohibited for three months after the hysterectomy (the surgeon’s exact words to Casey were, “You’re not allowed in. You have to stay out. You could tear her sutures”). I was fine with that - only three months, and then life could FINALLY get back to pre-BC normal! And then the three-month deadline was up, and . . . it didn’t get back to normal. It wasn’t normal. It was uncomfortable. It was painful. And as time went on, it became downright excruciating, to the point where it was just plain impossible.
We told my medical oncologist at my six-month visit. She explained that the Arimidex, being a hormone blocker, naturally made the nether region drier than normal and suggested a number of hormone-free lubricants and cremes and home remedies. They didn’t work. We told my surgeon when I went back for my six-month follow-up, a couple months after the oncologist. He explained that yes, the Arimidex did contribute to dryness, and that I had an additional complication: I no longer had ovaries. Even in natural menopause, women with ovaries still have estrogen, which contributes to vaginal health - lubrication, elasticity, etc. We had taken out my ovaries, which took away my estrogen, and then we’d put me on medication to block any residual hormones generated by random glands in my body, which took away the rest. As a result, I became shrunken, inflexible, more at risk for tearing and other damage, and dry as the lunar landscape up in there. As he put it, I now have the vagina of a 90-year-old woman. And I’m only 48.
He was very sympathetic and referred me to a a doctor who specializes in patients like me - breast cancer survivors who have undergone complete hysterectomies who CAN’T have hormone-replacement therapy because that would just feed the cancer. I couldn’t get an appointment with her until the beginning of March. In the meantime, I had my regular gynecologist appointment in February (who knew that you still need to see a gynecologist each year when you no longer have equipment to be checked out?) and explained the situation to her, just to keep her in the loop. She was the one who suggested that pelvic floor therapy might be helpful, because it would help increase blood circulation and oxygen supply down yonder, which would then promote at least a little elasticity. She gave me the name of my physical therapist, who I would ultimately begin seeing a few weeks later.
The specialist agreed with the pelvic floor therapy route and also made a couple of other suggestions. One was a product called the Estring, an estrogen-filled ring that can be inserted and that releases a small, steady amount of localized estrogen over the course of 90 days to reportedly restore things to near-normal. Studies have shown that such a small amount of hormones is safe for breast cancer patients, BUT nothing is 100% guaranteed, and while my oncologist is comfortable with prescribing the Estring - and I tried it for a total of maybe 72 hours before getting freaked out and taking it out - she told me that it shouldn’t be used long-term, and not even for 90 days in a row, just to be safe. I was increasingly uncomfortable with the risk of using it at all and asked Casey if he’d be upset if I didn’t. He, as always, told me that whatever I wanted was fine with him.
The other option suggested by the specialist is the one I’ve chosen to pursue, again with Casey’s full support, and this is another surgical procedure, although I don’t know if “surgery” is the right word. It’s called the MonaLisa Touch, and it’s a laser procedure that creates hundreds of tiny incisions in the vaginal membrane to stimulate the production of collagen. This, in turn, restores elasticity and function and some sort of chemical balance. It has a high success rate, is reportedly not painful, and involves no hormones whatsoever. There will be two treatments initially, back to back, and then I’ll need one “touch-up” each year. The bad news is that it’s expensive, and it’s NOT covered by insurance.
Guess what my coronavirus stimulus check is going toward?
The procedure isn’t yet scheduled, but as soon as COVID-19 restrictions ease up, I’ll find out where they even do it - not every medical facility does - and get everything set up. And then I’ll cross my fingers that it works, because if it doesn’t, I’m about out of options. Which means that that part of my life, and that part of Casey’s and my relationship, is over for good.
To say it’s been difficult is an understatement. Sure, the hysterectomy was my own idea and my own choice - but if it hadn’t been for breast cancer, I may not ever have even thought about it. I would’ve dealt with the fibroid when necessary, but I may or may not have ever known about my family history of uterine and ovarian cancer, so it’s hard to say whether I would’ve opted for a hysterectomy - or, if I had, if I’d have chosen to have my ovaries removed along with my uterus. Because if I’d left my ovaries in, chances are I wouldn’t be dealing with the issues I have now.
If I had known this would happen, would I still have done it? I have to admit that I honestly don’t know. But at least I would’ve known. I would’ve been prepared that this was what it would be like after, rather than expecting that I wouldn’t be losing something so important. And I could have made a fully-informed decision. This is why I’ve felt so compelled to put all of this out there, with Casey’s blessing.
I was so incredibly fortunate that my doctors were able to save my breast - I didn’t have a mastectomy, didn’t need to undergo reconstructive surgery. I was so incredibly fortunate that I didn’t have chemotherapy, didn’t lose my hair, didn’t deal with the physical sickness that comes with it. Even with a lumpectomy and radiation, however, I experienced body issues. I remember being in the shower toward the end of radiation and staring down at myself and wondering how on earth I’d wound up here - my incisions had gotten infected, so they were still red and raw; my skin was burned from the radiation; there was a dent in my breast where the cancer had been removed. My chest looked like it had been put through the wringer. I couldn’t wrap my head around the fact that it was MY chest. That that was ME.
Feeling good about yourself plays a part in intimacy, at least for women, at least for ME. So it was sometimes challenging enough when my breast was still healing, and I looked forward to being completely recovered and being comfortable in my own body again so I could once again have that kind of closeness with Casey. And here it is a year later, and I can’t have ANY kind of closeness. It’s painful - not just physically, but emotionally. Again, I’m so incredibly fortunate that Casey is so supportive, doesn’t pressure, doesn’t push - he understands, and he still loves me. But *I* need this - not just physically, but emotionally. I need to feel normal. I need to feel like the person I was. I need for cancer to stop taking things away from me. I need my old life back.
If you’ve stuck with me this long, thank you. I hope my sharing this can help someone. Like I said, I wish someone had told me.