Yo, I don’t think we should talk about this
(Come on, why not?)
People might misunderstand what we’re tryin’ to say, you know?
(No, but that’s a part of life)
Come onLet’s talk about you and me
Let’s talk about all the good things
And the bad things that may be
Let’s talk about sex
Let’s talk about sex
Let’s talk about sex
Let’s talk about sex
I’ve known women whose spouses and partners totally had a sexual meltdown when they were diagnosed and treated with cancer. Instead of caring and trying to expeditiously heal these women, I’ve known too many women who have been treated as if they were lepers or asexual after diagnosis and treatment. Women whose partners and spouses have used cancer and the altering of a woman’s body as an excuse to end the relationship–or at the very least, sending it off on a negative trajectory.
My husband had his moments of meltdown after my breast cancer diagnosis, but he didn’t let my mastectomy get in the way of physical lovin’ or staying committed to our relationship. He might have been overwhelmed and difficult when my parents stayed with us after surgery, but I most remember from the early days after surgery that in private, he tried to navigate my altered body right away and did a damn good job of helping me to feel ok with the fact I had had a breast–yes, that very magnified part of a woman’s anatomy here in the US–removed. He wasn’t comfortable enough to share my new look with the world and so early on became my cleavage monitor–which I found and have continued to find annoying–however, he has made me know that he still wants me.
A year or so after my breast cancer diagnosis and mastectomy, my oncologist decided to recommend that I shut down my estrogen supply with medically (i.e.. Lupron Depot shots every 3 months) induced menopause rather than ok the hysterectomy my gynecologist was recommending. I really wasn’t hip on spending a summer vacation dealing with the surgical recovery of a hysterectomy (too much to do and too many people and places to see!) and so I went with the Lupron Depot shots.
No worries. I was tough. I trusted my medical team. This was for the best. I had all of the necessary information to make an informed decision, right?
No one mentioned the impact that the Lupron Depot shots would have on my body or my sex life. No one.
The impact was immediate. I didn’t want Terry to touch me. Not the “Honey, not tonight– I’m too tired” kind of don’t touch me, but the prickly “keep your hands to yourself” kind of don’t touch me where I’d be content to be platonic for the next decade. My body changed overnight into what felt like a dried up prune. Let’s be clear: intercourse was painful. Yes, my body decided that it would go into hibernation, but NO one had any suggestions for this woman in her mid-40s about how to handle this new reality.
Granted I was distracted with the fact that my snoring ramped up as well and so I focused on remedying that situation; however, I spent more than a year in a very uncomfortable state in regards to my sexuality and feeling extremely isolated and alone, unable to talk to T about it or anyone else. I was not raised in a family or era where discussing sex was common in general conversation. Instead of having a ‘talk’ about sex when I was of a certain age, my mom gave me an adorably cute book to read that covered the basics, but didn’t really pave the way for establishing regular discussions about this hot topic.
Fast forward to moving back to Chicago during the summer of 2014. My sister being diagnosed with BC that summer was enough of a push to get over any hurdles I may have put up in the way of establishing a new medical team in Chicago. I was 2 and a 1/2 years out of ‘active’ treatment, but that didn’t mean I could avoid setting up a new set of doctors to make sure that I stayed as healthy as possible. I ended up at University of Chicago and at one of my appointments, I picked up a flyer for the PRISM Clinic, the University of Chicago’s Program in Integrative Sexual Medicine for Women and Girls with Cancer.
While Dr. Stacy Lindau appeared warm and welcoming in her picture on the flier, I didn’t jump right on setting up an appointment. Come on, I didn’t have a problem with my sexuality or relationship. My discomfort and the loss of pleasure in something I once really enjoyed was just something I had to suck up and deal with, right? Right?
Turns out, no, it’s not something one has to suck up. I finally made an appointment with Dr. Lindau and went to see her and her team. Turns out I didn’t have to just deal with the pain and discomfort I was experiencing. After a couple of appointments and evaluations, it turns out much of my issues revolved around vaginal dryness and being able to communicate with T as to what my needs were. The clinic was able to give me some great tools to deal with my situation (such as learning how to love the lube) and helped me see that this issue wasn’t all in my head, that instead, the medicines I was taking to decrease my chances of my cancer recurring had seriously impacted me with side effects.
I also learned I was not alone in feeling this way and that I was not a freak. I also learned that while pain and losing one’s joy in sex can be a ‘normal’ thing to happen because of medical treatments and menopause and lack of sleep, it is NOT one that you have to accept as unfixable.
The most wonderful part of learning to reclaim my sexuality, however, was being asked to become a patient advisor to Dr. Lindau’s WomanLab. For the last two years, I have been a part of a group of women who have met with Dr. Lindau and her team to help build this amazing virtual platform “for all women and those that love us” so that what I learned in going to the PRISM clinic can be shared with anyone who has access to the Internet.
Here are the basics:
Our first deep dive? Sex and cancer.
Most women with cancer have a cancer that comes from or affects the sexual organs like the breasts, uterus and ovaries. Cancer and its treatment can make it hard to have sex. Loss of sexual function is a health problem for many women with cancer and their partners. Sexual function can be preserved and restored after cancer, but not if nobody is talking about it.
We are scientists, doctors and therapists, patients and partners who believe that sexual function is a basic human function for people of all ages and health conditions, races and ethnicities, gender and sexual identities, abilities and experiences. We believe, by spreading truths about sex, that women with cancer and other common health conditions can preserve and recover their sexual function.
WomanLab combines the power of knowledge with the power of women so every woman knows what she needs to know to preserve and recover her sexual function.
WomanLab is for:
Women at increased risk for cancer
Women with a new cancer diagnosis
Women in treatment
Women who have completed treatment
Partners of people with cancer
Everyone who loves women
Everyone who cares for women
The warmth and kindness and knowledge that Dr. Lindau and her team have exuded in appointments and in our patient advisory meetings comes through in WomanLab. It’s wonderful to see this platform grow and involve, becoming increasingly more inclusive of women experiencing issues around sexuality.
I want all women to know that they are not alone in dealing with sexual pain and discomfort–and most importantly that they don’t have to accept this as their new ‘normal’. Help is out there.
Here are some key links to WomanLab:
WomanLab Website: http://womanlab.org
And finally, to see just how wonderfully kind, intelligent and warm this woman is, here is Dr. Lindau speaking in Aspen: