Sex after Ovarian Cancer
- Emilee Garfield is a two-time cancer survivor, an author, a certified wellness and life coach, a Pilates and yoga instructor and a mom of three dedicated to sharing her cancer journey to help others as they move their own journeys. One of her big topics of discussion concerns a woman’s sex life after cancer treatment.
- Garfield had a rare childhood cancer when she was four, and then was diagnosed with ovarian cancer in 2015. Ovarian cancer is called the cancer that whispers because its symptoms can be very vague. People should remain vigilant and aware of any new or unusual symptoms and report to their physicians for appropriate evaluation.
- Women should know that sexual side effects are not only common after cancer treatment, but also that there are many solutions out there for a variety of issues.
Garfield is a two-time cancer survivor, an author, a certified wellness and life coach, a Pilates and yoga instructor and a mom of three. She dedicates herself to extreme vulnerability about her cancer journey and how that has impacted her sex life, among other things. In her most recent Instagram post, she talks about going through menopause at such a young age.
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Garfield’s Cancer Journey
To understand where Garfield is coming from, it’s important to learn about her cancer journey. Garfield’s first introduction to the disease came at the very young age of 4. After receiving the diagnosis of rhabdomyosarcoma, she had surgery to remove a tumor the size of a grapefruit from her pelvic area. Unfortunately, the surgery was unsuccessful because the tumor had “grown arms and things out of it strangling [her] other organs,” so she underwent two years of major chemotherapy and radiation treatments.“Now the side effects are showing itself, 41 years later,” she wrote in an Instagram caption.
But lingering side effects from childhood cancer wouldn’t be the last cancer-related issue she would have. On Jan. 9, 2015, Garfield received the devastating diagnosis of stage 3C ovarian cancer. She then had half of her colon, part of her ovaries, her uterus, part of her vagina and her rectum removed during surgery. As a result, she had an ostomy (a surgically-created opening in your abdomen that allows waste to leave your body) and her waste is removed via a colostomy bag.
Getting Back to Sex
Garfield, now in her 40s, was 39 when she began experiencing menopause. This alone would be enough to impact someone’s sex life, but she’s also struggled because of her cancer surgeries.
RELATED: Sex After Cancer: How Women Can Connect the Body & Mind and Find the Right Products
One particularly difficult issue she’s had to overcome was pain during sex. In another recent Instagram post, Garfield shared one way that she’s been able to improve her sex life post cancer treatment.
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“I have lived too long with SHAME,” she wrote. “Shame of my body post cancer. The thing is that you can't see what I feel ashamed about because it's internal. All the feelings, emotional and physical live within me. Slowly I'm learning that others have shame too and it's the reason why I am here on this platform. My purpose is to help someone else feel less ashamed of their body and limitations.
“Childhood cancer, especially one to your vaginal area can really do damage to you physically and mentally. I know because I have lived it. I think I may have been the only person who hated sex because it was so painful. It doesn't have to always be that way though. You don't have to push through the pain. You don't have to make yourself have sex with someone just because they want it. Respect your body.”
She then began to explain that her vagina is now half the size it was before she got cancer. But to help with the pain that she’s experienced during sex, she’s worked on “stretching internal scar tissue post radiation and surgery” with the help of dilators cylindrical objects that gradually increase in size and can be used to help manage pain with sex.
Sex After Cancer: Can A Dilator Help?
“Usually people in the medical community only associate them with women who’ve had radiation, pelvic radiation, to help with vaginal stenosis, adhesions and keeping the elasticity in the vagina,” Jeanne Carter, a clinical psychologist and certified sexual health therapist with Memorial Sloan Kettering Cancer Center, previously told SurvivorNet. “But we’ve found this to be a useful tool for any woman who’s had any difficulty with pain, as well as it can help a woman gain confidence that something can go in or near the vagina and not cause any discomfort.”
Carter generally recommends a firm dilator so women can do gentle stretching within the vaginal canal. Soft dilators, she explained, have a tendency to move more outside than inside.
“In general, you usually want a dilator that comes with a series of sizes, so that you have the ability to gradually, gently stretch and massage these tissues as you’re gaining confidence,” Carter said. “It’s also a great tool… to use pelvic floor muscle movement with the dilator so that you can, again, learn how to relax those muscles, which can be helpful with future exams or intimacy as well.”
For Garfield, improving her sex life is an ongoing journey. But, thankfully for the cancer community, she’s open to sharing the tips and tricks she’s found most helpful.
“Finally, I am trusting someone to touch me without hurting me,” she wrote. “The more you relax those deep pelvic floor muscles inside of you the happier your sex life will be as well as help you release internal pain… For anyone who tells a cancer survivor ‘get over it’ stop complaining, be kind. It's hard.”
Understanding Ovarian Cancer
Ovarian cancer is when the ovaries which produce the sex hormone, estrogen, as well as eggs become cancerous. Women have two ovaries, one on either side of the uterus.
The fallopian tube, which brings the egg from the ovary to the uterus for fertilization, is actually where many ovarian cancers begin. First, a few cancerous cells develop on the fallopian tubes, then these cells stick to the ovaries as the fallopian tubes brush over the ovary. From there, the cancerous cells grow to form a tumor.
Your risk for ovarian cancer may be increased if you have gone through menopause, have a gene mutation like BRCA1 or BRCA2, are obese or overweight, had your first pregnancy after age 35 or never carried a pregnancy to full-term, have a family history of cancer or used hormone replacement therapy. You should talk with your doctor about your potential risk for the disease.
Symptoms of Ovarian Cancer
Garfield is a staunch advocate for ovarian cancer awareness. And she really wants people to listen to their bodies for any signs of the disease.
“You are NEVER too young to get this,” she said. “Know your genetics. Know thh symptoms. This cancer is screaming at you. All the signs are there, you just have to LISTEN.”
Ovarian cancer is known as the cancer that whispers because symptoms are vague and sometimes similar to regular menstrual cycle fluctuations. Dr. Beth Karlan, a gynecologic oncologist with UCLA Health, says that ovarian cancer can be difficult to recognize with its subtle symptoms.
Ovarian Cancer: The Cancer That Whispers
"Ovarian cancer does not have any specific symptoms," Karlan said in an earlier interview with SurvivorNet. "It's often referred to as the cancer that whispers in that it has symptoms that are really very vague… and nothing that may bring your attention directly to the ovaries."
But Dr. Karlan still wants women to keep an eye out for a variety of possible symptoms.
"The symptoms include things like feeling full earlier than you usually would when your appetite is strong… Feeling bloated," she added. "Some changes in your bowel habits. Some pain in the pelvis. These are symptoms women may have every month. These are not very specific. But what we've found from multiple studies, it's this constellation of symptoms."
According to Dr. Ramez Eskander, a board-certified gynecologic oncologist and assistant professor at UC San Diego School of Medicine, Kari Neumayer's cancer journey highlights the fact that ovarian cancer "can present in a heterogenous manner." In other words, this cancer can cause varying clinical symptoms and physical exam findings.
"Sometimes, the presenting symptom can be an enlarged lymph node at the base of the umbilicus, although in [Neumayer's] case, it appeared to be a skin lesion," he said. "Ultimately, the need remains for women to remain vigilant and aware, communicating any new or unusual symptoms to their physicians for appropriate evaluation."
Dr. Stephanie Wethington, director of the gynecologic oncology survivorship program at Johns Hopkins Medicine, previously told SurvivorNet that prevention for ovarian cancer is what we should focus on.
"We must remember that prevention is key and advocate for all women to discuss their family history and individual risk factors with their doctors and ask whether there are risk reducing options available to them," Dr. Wethington wrote.
Our advice to readers: See your doctor if you feel like something is off. Given that ovarian cancer can have no symptoms or a myriad of symptoms that you might easily brush off as nothing, it's important to always seek medical attention when your gut is telling you something might be wrong. That doesn't mean we should assume the worst every time we feel bloated or have a change in appetite, but it does mean that we should always try to listen to the signs our body is giving us.
Sex after Cancer
Garfield is not alone in feeling shame about her body after cancer treatment. But both she and Carter, the certified sexual health therapist, are determined to try and help women face this emotion and know that they are not alone.
"Patients actually feel like it's just them, that no one else is having these issues," Carter said of sexual problems after cancer treatment. "So, I think it's important for healthcare providers to raise the topic so it can normalize their experience, as well as give them an avenue to get information and support."
Physical Pain and Sex
Beyond the potential use of dilators, Carter also highly recommends the use of lubricants and moisturizers to help aid in pain relief during sex.
Sex After Cancer: What's the Difference Between Lubricant and Moisturizer?
"A lot of times people feel like lubricants are the solution, and they are part of the solution, but they are not the entire solution," she said. "When you don't have estrogen, you usually are not having moisture in the vagina, as well as on the vulva."
Carter also emphasized the importance of making sure the vulva, or the external part of a woman's genitals, is well-moisturized. In order to do so, you have options as both non-hormonal moisturizers and low-dose estrogen moisturizers are available. Carter shared examples of a few non-hormonal products that she’s seen work well for many women:
- Hyalo Gyn
- Replens
- Revaree
Carter added that women with cancer-related side effects often need to moisturize more frequently than others.
"We find that women need to moisturize more in the cancer setting, like 3 to 5 times per week, whereas the product instructions will tell you to only use it 2 to 3 times a week and only in the vagina," she explained.
In addtion, Carter talked about training the pelvic floor muscles to help with pain.
“Pelvic floor muscles can contribute to pain,” she said. “A lot of our women are also having urinary leakage and incontinence issues, which can be connected with aging, as well as lack of estrogen. So we teach women how to move these pelvic floor muscles in an efficient way, so that we can have them have less pain, or have the skills to manage pain, both with exams and sexual activity.”
And even beyond managing pain, working on your pelvic floor muscles can have added benefits to your sex life.
“In addition, there was some literature in the sexual medicine field that shows that women who have better pelvic floor strength and tone actually have a better arousal response, because of enhanced circulation,” she said. “So it’s another strategy that we get women doing, not only to help with pain, but also to possibly help them enhance circulation, which can be helpful for the arousal response.”
Emotional Pain and Sex
Carter also took the time to note that emotional struggles for women trying to have sex after or during cancer treatment present a very real problem too.
RELATED: Sex After Cancer: Deciding When To Be Intimate Again
"Sexuality is physical and emotional, and they're completely enmeshed, so you can't really treat this without addressing both of those issues," she said. "I think women going through a cancer experience are just really trying to make sense of what their body is going through."
Sex After Cancer: The Mind-Body Connection
For Carter, she hears a lot of women express feelings of guilt when they’re dealing with sexual problems resulting from cancer.
“When you have to have changes in your sexuality, it feels like another huge loss,” she said. “So, it’s not uncommon for women to express aspects of guilt to me, about feeling guilty that they can’t share their body, feeling guilty that they can’t meet their partner’s needs, feeling guilty about having the cancer experience affect them, their family, their loved ones. But I always say guilt is a wasted emotion that we could use energy someplace else. Nobody asked for cancer. Nobody asked for these changes, but different doesn’t have to mean that it’s bad.”
And whether your biggest concerns revolve around mourning the loss of a body part, like breasts after a mastectomy, or trying to find the confidence to date again after treatment, it’s important to know that there is support and guidance available whether it be trying new things in the bedroom or seeking the guidance of a therapist or peers in a support group.
"A lot of these changes [to the body] happen very quickly and I think people are ready at different times to be ready to address it," Carter said. "Taking time and effort to actually pay attention to these areas and to touch these areas and to try to heal these areas I think wakes up something for women that there's a part of their body that maybe they weren't paying attention to."
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