My Clitoris Ghosted Me After Breast Cancer - Here's How I Found Pleasure Again

Get the Full StoryThere's never a good time to get breast cancer, but my 2001 diagnosis came during a life stage that was hardly ideal. I was 28 at the time and a second-year ob-gyn resident, newly married to my college sweetheart. Life was busy, but going great - until it wasn't.

My diagnosis was a shock. I had felt a breast lump myself, but I originally dismissed it because I thought I was too young for breast cancer. Even my fellow physicians thought the same thing. But a few months later, my mom was diagnosed with late-stage ovarian cancer and died soon after. At her funeral, I thought, "Maybe I should get that lump checked out." It put me on a path that would dramatically influence my physical and sexual health - and change how I talk to patients now.

My cancer treatment put me into menopause.

Once I had my lump investigated, my fears were confirmed: I had breast cancer, stage 2A estrogen receptor-positive breast cancer, to be specific. My treatment involved a bilateral mastectomy, where both of my breasts were removed, along with six months of chemotherapy.

I was put into menopause three times - one was from chemotherapy, another was medically-induced, and a few years down the road, I chose to have my ovaries removed because of my mom's history with ovarian cancer.

But my ob-training did not prepare me for what the average woman dealing with premature menopause or menopause would go through, and my sexual health took a hit for years because of it.

I experienced clitoral atrophy, and didn't even realize it.

There was no discussion at all with my medical team about any of the sexual side effects that I might experience from menopause. I don't think it's because they thought I already knew about this from being a doctor. They either didn't know it themselves or just didn't think it was important to discuss with me. But I was 28 and I was only married for a year. I didn't know what to look out for.

So, I ended up dealing with a diminished sexual response. Meaning, sex didn't feel the same as it used to. I later learned that this was due to clitoral atrophy, which is when the clitoris shrinks or no longer responds the way it should to sexual arousal. Sex was also a little bit more painful due to vaginal dryness from menopause. It took longer to get aroused, too. Frankly, sometimes I would have performative sex to just keep my relationship going.

I didn't even realize that I was dealing with symptoms until years later. I had just gotten used to them and assumed that this was how sex was as you got older.

But in my own work as a menopause specialist, I attended a few conferences that address the latest treatments for women in this life stage. It was from those conferences that I realized, "Hey, I need to be aggressive and treat this." I had become lazy about my own sexual health, and it was time to change that.

Treatment made a huge difference for me.

I started with localized vaginal estrogen, which is a treatment that goes into the vagina and is considered safe for the type of cancer that I had. I then started adding in low-dose testosterone to address my low libido - we know that the tissue of the vulva, vagina, and clitoris have a lot of receptors for estrogen and testosterone.

This ended up being the secret sauce that improved my symptoms. I suddenly realized, "Oh, this is how sex is supposed to feel?" Looking back, I now know that I had clitoral atrophy and vulvar atrophy. But you don't realize what you've lost until you get it back.

Every woman's experience with clitoral atrophy is different.

I now treat patients with clitoral atrophy, and some experience more severe symptoms than I did. Some women have a complete inability to orgasm; Others can experience scarring and adhesions to the clitoral hood, which interferes with pleasure.

My experience with clitoral atrophy is why I now specialize in menopause care. I try to advocate for survivors so they know that it's not normal to have to suffer through this. I should have never had to deal with years of being untreated and under-treated, and neither should they. Unfortunately, clitoral atrophy is a progressive phenomenon. Meaning, it will get worse over time if you do nothing. That's why it's so important for women to speak up when they're struggling.

In my opinion, discussions around sexual health side effects should be a standard part of informed consent in receiving medications for cancer. It's a crime that women have to discover this on their own and be their own advocates. This should be the standard of care.

If you're starting treatment for cancer, you should ask your oncologist about potential sexual side effects of your medication. Don't be ashamed. You can just simply say, "I'm concerned about sexual side effects. What can you do to prevent them from happening?" Just be aware that many times an oncologist or even an ob-gyn will tell you to use a non-hormonal over-the-counter moisturizer and lubricant. Those are helpful, but they won't prevent the underlying issues of loss of collagen and blood flow. We have countless published studies that find we can use low-dose hormones for breast cancer survivors, including women on active treatment.

It's been 24 years since I had breast cancer, and I'm in really good health. I have no evidence of disease. My sexual health is good, my menopause symptoms are under control, and I feel the best I've felt in years. But it took a lot of time and self-advocacy to get here. Now, I'm doing everything I can to help other women avoid the complicated sexual health journey I had to go through.

- As told to Korin Miller

Korin Miller is a writer specializing in general wellness, health, and lifestyle trends. Her work has appeared in Women's Health, Self, Health, Forbes, and more.

Share: