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Visualizing Sex as a Spectrum

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Infographic reveals the startling complexity of sex determination

Infographic by Pitch Interactive and Amanda Montañez

By Amanda Montañez

Sex and gender pervade nearly every aspect of our lives. Each time we use a public restroom, shop for clothes, or fill out a form, we are insistently reminded that we must be either male or female; men or women; boys or girls. Even things that ostensibly have nothing to do with sex or gender—what we eat, for example, or the books we read—are often sold to us as if they are necessarily feminine or masculine.

Some of these conventions currently face challenges, some more polarizing than others. On the milder end of things, enterprising online retailers promote gender-neutral clothing for babies, and city transport authorities mercifully abolish the phrase “ladies and gentlemen” from public announcements. And on the other side of the controversy scale, U.S. state legislators debate so-called “bathroom bills,” which would prohibit transgender individuals from using public restrooms corresponding to their gender identity. This dispute has prompted some venues to offer a gender-neutral restroom option, or simply to do away with gender distinctions altogether in their facilities.

Much of the public discourse in this arena centers on gender rather than sex, presumably because gender is understood to be somewhat subjective; it is a social construct that can be complex, fluid, multifaceted. Biological sex, on the other hand, appears to leave less room for debate. You either have two X chromosomes or an X and a Y; ovaries or testes; a vagina or a penis. Regardless of how an individual ends up identifying, they are assigned to one sex or the other at birth based on these binary sets of characteristics.

But of course, sex is not that simple either.

The September issue of Scientific American explores the fascinating and evolving science of sex and gender. One of the graphics I had the pleasure of working on breaks down the idea of biological sex as a non-binary attribute, focusing largely on what clinicians refer to as disorders of sex development (DSD), also known as intersex.

The project was originally conceived as a data-driven graphic exploring the spectra of sex and gender. I wondered, for instance, what data could tell us about the frequency of transgender and non-binary identities, what proportion of the population is intersex, and how that value might break down into rates of specific DSDs.

I hired the researcher Amanda Hobbs to look into these questions, and what she came back with, rather than answers, looked more like a series of new questions. The search for solid data on transgender and intersex populations proved challenging, and was confounded by a variety of factors. For example, surveys often lump transgender in with gay, lesbian, and bisexual identities. And DSDs, in addition to being variously defined by different entities, sometimes go undetected or emerge unexpectedly, either during sexual development or later in life.

The project abruptly transformed into an exercise in visualizing complexity. First, it seemed imperative to define a few terms. Sex, gender, and sexuality are all distinct from one another (although they are often related), and each exists on its own spectrum. Moreover, sex cannot be depicted as a simple, one-dimensional scale. In the world of DSDs, an individual may shift along the spectrum as development brings new biological factors into play. The density of science underlying this phenomenon compelled a shift towards intersex as the primary focus of the visualization.

Now that my task was clear, I set about assembling the content of the graphic and putting it down on paper. In part, this process clarified how much I could include, as the complete list of known DSDs and their various manifestations proved unwieldy for a single spread in a print magazine. I ended up with a visual outline of sorts depicting a diverse selection of conditions and their convoluted pathways of development over time. Although not an especially pretty sketch, it captured the sense of intricacy the topic demanded.

Visual outline

Next I consulted with Dr. Amy Winsiewski, a DSD specialist at the University of Oklahoma, who was kind enough to review the content of my sketch for accuracy. And finally, I called upon the visualization experts at Pitch Interactive to help bring the project to life.

[caption id="attachment_2328558" align="aligncenter" width="600"] Sketch

Once the aesthetic of the graphic had been established, I continued to refine both the text and design elements, guided by feedback from my colleagues who helped identify areas that were unclear or difficult to follow.

The finished print graphic

Detail of the finished print graphic

The resulting visualization is a source of pride for me, as I hope it is for everyone who contributed to its development. (You can see a larger version here in the September digital issue.) Design and visual communication feats aside, I believe the content itself is of critical importance from a social and policy perspective.

DSDs—which, broadly defined, may affect about one percent of the population—represent a robust, evidence-based argument to reject rigid assignations of sex and gender. Certain recent developments, such as the Swedish adoption of a gender-neutral singular pronoun, and the growing call to stop medically unnecessary surgeries on intersex babies, indicate a shift in the right direction. I am hopeful that raising public awareness of intersex, along with transgender and non-binary identities, will help align policies more closely with scientific reality, and by extension, social justice.

Complete Article HERE!

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‘Why won’t you have sex with me?’ A real look at disability and relationships

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Louise Bruton’s Dublin Fringe Festival show examines our ignorance and prejudices, and takes a real look at disability, sex and relationships

Louise Bruton: ‘We all have our dry spells. We all get heartbroken . . . all the emotional things, they’re all similar to everybody else.’

Louise Bruton is on her way to buy Buckfast ahead of a visit to a friend’s festival on Inishturk island. Standard. Bruton is a writer and journalist who rose to prominence with her website Legless In Dublin (leglessindublin.com) detailing accessibility issues and reviews of venues and events. As a wheelchair user, she has managed to harness a way of communicating that undercuts preconceptions, prejudices and presumptions.

Bruton is blunt and hilarious. A pinned tweet on her Twitter account is a series of photos of her hugging and dancing with Grace Jones.

But there are also rage-inducing snippets of the reality of being a wheelchair user. Sample line: “Last one on the train in Heuston. Not a staff member or ramp in sight. Doors have been closed again. Guess I live here now.” Hard to stomach, but so necessary. Bruton calls this ridiculousness out.

It’s a meditation on disability, sex, relationships, and the misconceptions of non-disabled people hold about the sex lives of disabled people

Her latest project is a show for the Dublin Fringe Festival, excellently titled Why Won’t You Have Sex With Me?, which plays September 8th-11th at the Project Arts Centre in Temple Bar, Dublin. It’s a meditation on disability, sex, relationships, and the misconceptions of non-disabled people hold about the sex lives of disabled people.

In the show, she’ll talk to the audience – “there will be a lot of interaction with visuals” – and it will also deal with sex and relationships in general.

Bruton hopes that people might leave the show checking themselves a little, wondering if they’ve ever been that person who has figuratively (or literally) “patted someone on the head, or spoken about them in front of them.”

The Fringe show is also inspired by how the media attempts to tap into the “issue” of sex and disability.

A while ago, after the Guardian ran a piece about disabled people and sex – something Bruton identifies as an “evergreen”, annual story – a couple of journalists from Irish outlets contacted her asking if she would be up for discussing the “stigma” associated with having sex with a disabled person.

We all have our dry spells. We all get heartbroken . . . all the emotional things, they’re all similar to everybody else

“That came in as a very loaded question,” Bruton says, “assuming that there is a stigma. And if there is a stigma, I’m unaware of it. I think it’s pretty unfair to blame anything going on in your love life purely on the fact of a disability. I think that kind of erases everything else about you.”

Bruton sees that story as just another entry point for discussing other people’s relationships and sex lives. Those kinds of articles, she thinks, feel like they use disability as leverage for voyeurism, “I just think it’s a really lazy way to be kind of a pervert about it!”

“We all go through the feast or famine spells when it comes to sex and dating. That’s something that applies to everyone. In the week those journalists contacted me – what if I was going through the famine time? Do I tell them that? ‘Nothing’s happening for me right now, I’m in the famine stages!’ It’s challenging that, pointing out how ridiculous those articles are. They’re done on an annual basis. There’s no evidence to support that our love lives are any different just because we’re disabled.”

“The way this is framed in the media,” Bruton says, “is that if you’re disabled and you’re not having sex, you’re going to die alone, and if you’re disabled and you are having sex, then you’re some sort of a freak or a fetishist.

“You’re put in these two categories, whereas I’m like ‘we’re the same as everybody else’. We all have our dry spells. We all get heartbroken . . . all the emotional things, they’re all similar to everybody else. The elements that do make it different or difficult, have been created by non-disabled people.

“That is the physical structure of society, where we don’t get into every single pub with everybody else in it, or nightclubs that everybody else is in. There’s also the fact that non-disabled people have a very wrong and archaic view of disabled people. They’re looking at us as if we’re completely different, whereas we go through the exact emotions as everybody else.”

Bruton is the type of person who is up the front at gigs, and when she arrives at parties, the energy in the room fizzes. Her busy social life creates the opportunity for a lot of encounters.

“People will come up to me anyway, because I’m in a wheelchair, and they’ll be like, ‘what happened you?’ And I don’t really want to go into my entire personal history and tell them, because it’s none of their business. I know a lot of my male friends who are in wheelchairs, a lot of people come up to them and very specifically ask them does their penis work.

There’s a manipulative attitude that people have towards disabled people

“I didn’t realise how bad it was for guys. That’s just not what you ask anybody. That is such a juvenile thing, firstly, and it’s just really rude as well.

“It seems to be that men are put on the spot in a much more invasive way,” she says. “People I know who are disabled and are in relationships, they have mentioned times where they’ve felt unsure if their partner is comfortable with them being disabled, and that has gone on for years.”

Bruton says that there seems to be a general feeling that disabled people “should ‘take what you can get’” when it comes to sex and relationships.

“There’s a manipulative attitude that people have towards disabled people – ‘you’re lucky to be getting anyone at all’ – and if you’ve any relationship issues, it’s like ‘you should be glad they’re going out with you’. It might create this fear that they [disabled people] mightn’t have many options so they might have to ‘settle’. Nobody should ever feel that settling is an option.”

A non-disabled person Bruton interviewed as research for the show said that if they ended a relationship with a disabled person, they would be afraid it would be because of the disability, and not a personality clash. “There’s a lot of double takes going on in people’s minds,” Bruton says, “you really are questioning how things are being perceived by other people.”

The superficiality of online dating causes issues, Bruton says. “Because the way that dating has changed – because online dating is such a big part of it now – there is a superficial element to dating now more than ever. You’re basing things on three photos and one sentence that describes your entire life.

“I’m hesitant in the online world . . . I don’t shy away from having my wheelchair in photos. The guys are immediately like ‘why are you in a wheelchair? What happened you?’ There’s no way to brush that off politely. I’ve tried.

“In real life you can say ‘oh I’ll tell you another time!’, but in a message on your phone, they find that rude, or don’t know what to say next.”

If you’re so concerned with taking advantage of someone with a disability, you should be concerned about taking advantage of all other people

As part of the making of the show, Bruton interviewed non-disabled people about disabled people, sex and dating. One word kept repeating. “The word ‘vulnerable’ came up a lot,” Bruton explains. “This is mostly men who said this. Men felt that if they were to date or have sex with a woman with a disability or a man with a disability, they would somehow be taking advantage of a vulnerable person.

“So that goes back to that old-fashioned idea of disability that we weren’t in the same schools, we were sent away to homes to live and be looked after. That idea stuck with people…

“We’re no more vulnerable than the next person. Of course there are different levels to disability. But generally, if you’re so concerned with taking advantage of someone with a disability, you should be concerned about taking advantage of all other people. There’s a lot of hypocrisy with it.”

Something that has been said to Bruton has been the idea that, “‘it takes a very special person to go out with someone who has a disability’.

“The way I interpret that, is that means you have to be a carer almost, instead of being a boyfriend or a girlfriend. I think that’s at the back of people’s minds – they think they’re going to have to look after the person, rather than just spending time with them.”

I think a lot of people see relationships as a status thing

Regarding her own experiences, a not exactly infrequent one is strangers inviting themselves to discuss aspects of her personal life with her – asking if a friend is a boyfriend, or manufacturing a love story out of nowhere. “A lot of people go straight into asking if you’re in a relationship. I think a lot of people see relationships as a status thing, that you can only be truly accepted if you’re loved in that way.”

When Bruton was on crutches before using a wheelchair, she sometimes experienced guys freaking out and backing away when they realised she didn’t just have a sprained ankle or a sports injury. “Maybe they thought I was lying to them or something. Like I was tricking them. That was the vibe I got, that I had lied to them to get their attention.”

At this point, she realises there is an advantage to being able to identify such shallowness from the get-go. It’s like an extra layer of insight to character judgement that non-disabled people may not have, “It’s a really key indicator. Someone else, it could take them a few months to find out if they’re an asshole or not, but I can find out in a second.”

Complete Article HERE!

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How To Talk To Your Doctor About Sex When You Have Cancer

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More people are surviving cancer than ever before, but at least 60 percent of them experience long-term sexual problems post-treatment.

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So you’ve survived cancer. You’ve endured brutal treatments that caused hair loss, weight gain, nausea, or so much pain you could barely move. Perhaps your body looks different, too—maybe you had a double mastectomy with reconstruction, or an orchiectomy to remove one of your testicles. Now you’re turning your attention back to everyday life, whether that’s work, family, dating, school, or some combination of all of those. But you probably aren’t prepared for the horrifying side-effects those life-saving measures will likely have on sex and intimacy, from infertility and impotence, to penile and vaginal shrinkage, to body shame and silent suffering.

More than 15.5 million Americans are alive today with a history of cancer, and at least 60 percent of them experience long-term sexual problems post-treatment. What’s worse, only one-fifth of cancer survivors end up seeing a health care professional to get help with sex and intimacy issues stemming from their ordeal.

Part of the challenge is that the vast majority of cancer patients don’t talk to their oncologists about these problems, simply because they’re embarrassed or they think their low sex drive or severe vaginal dryness will eventually go away on their own. Others try to talk, but end up with versions of the same story: When I went back to my doctor and told him I was having problems with sex, he replied, ‘Well, I saved your life, didn’t I?’ And many oncologists aren’t prepared to answer questions about sex.

“Sex is the hot potato of patient professional communications. Everyone knows it’s important but no one wants to handle it,” says Leslie Schover, a clinical psychologist who’s one of the pioneers in helping cancer survivors navigate sexual health and fertility. “ When you ask psychologists, oncologists and nurses, ‘Do you think it’s important to talk to patients about sex?’ they say yes. And then you say, ‘Do you do it routinely?’ They say no. When you ask why, they say it’s someone else’s job.”

Schover spent 13 years as a staff psychologist at the Cleveland Clinic Foundation and nearly two decades at the University of Texas MD Anderson Cancer Center. After retiring last year, she founded Will2Love, a digital health company that offers evidence-based online help for cancer-related sex and fertility problems. Will2Love recently launched a national campaign called Bring It Up! that offers three-step plans for patients and health care providers, so they can talk more openly about how cancer treatments affect sex and intimacy. This fall, the company is collaborating with the American Cancer Society on a free clinical trial—participants will receive up to six months of free self-help programming in return for answering brief questionnaires—to track the success of the programs.

Schover spoke to Newsweek about the challenges cancer patients face when it comes to sex and intimacy, how they can better communicate with their doctors, and what resources can help them regain a satisfying sex life, even if it looks different than it did before.

NEWSWEEK: How do cancer treatments affect sex and intimacy?
LESLIE SCHOVER: A lot of cancer treatments damage some of the systems you need to have a healthy sex life. Some damage hormone levels, and surgery in the pelvic area removes parts of the reproductive system or damages nerves and blood vessels involved in sexual response. Radiation to the pelvic region reduces blood flow to the genital area for men and women, so it affects erections and women’s ability to get lubrication and have their vagina expand when they’re sexually excited.

What happens, for example, to a 35-year-old woman with breast cancer?
Even if it’s localized, they’ll probably want her to have chemotherapy, which tends to put a woman into permanent menopause. Doctors won’t want her to take any form of estrogen, so she’ll have hot flashes, severe vaginal dryness and loss of vaginal size, so sex becomes really painful. She’ll also face osteoporosis at a younger age. If she’s single and hasn’t had children, she’s facing infertility and a fast decision about freezing her eggs before chemo.

What about a 60-year-old man with prostate cancer?
A lot of men by that age are already starting to experience more difficulty getting or keeping erections, and after a prostatectomy, chances are, he won’t be able to recover full erections. Only a quarter of men recover erections anything like they had before surgery. There are a variety of treatments, like Viagra and other pills, but after prostate cancer surgery, most men don’t get a lot of benefit. They might be faced with choices like injecting a needle in the side of the penis to create a firm erection, or getting a penile prosthesis put in to give a man erections when he wants one. If he has that surgery, no semen will come out. He’ll have a dry orgasm, and although it will be quite pleasurable, a lot of men feel like it’s less intense than it was before. These men can also drip urine when they get sexually excited.

Why are so many people unprepared for these side-effects?
If you ask oncologists, ‘Do you tell patients what will happen?’ a higher percentage—like in some studies up to 80 percent—say they have talked to their patients about the sexual side-effects. When you survey patients, it’s rare that 50 percent remember a talk. But most of these talks are informed consent, like what will happen to you after surgery, radiation or chemotherapy. And during that talk, people are bombarded by so many facts and horrible side-effects that could happen, they just shut down. It’s easy for sex to get lost in the midst of this information. By the time people are really ready to hear more about sex, they’re in their recovery period.

Why is it so hard to talk about sex with your oncology team?
It takes courage to say, ‘Hey, I want to ask you about my sex life.’ When patients get their courage together and ask the question, they often get a dismissive answer like, ‘We’re controlling your cancer here, why are you worrying about your sex life?’ Or, ‘I’m your oncologist, why don’t you ask your gynecologist about that?’ Patients have to be assertive enough to bring up the question, but to deal with it if they don’t get a good answer. Sexual health is an important part of your overall quality of life and there’s nothing wrong with wanting to solve or prevent a problem.

What’s the best way for people to prepare for those conversations?
First, because clinics are so busy, ask for a longer appointment time and explain that you have a special question that needs to be addressed. At the start of the appointment, say, ‘I just want to remind you that I have one special question that I want to address today, so please give me time for that.’ Bring it up before the appointment is over.

Second, writing out a question on a piece of paper is a great idea. If you feel anxious or you’re stumbling over your words, you can take it out and read it.

Also, some people bring their spouse or partner to an appointment. They can offer moral support and help them remember all the things the doctor or nurse told them in answering the question.

So you’ve asked your question. Now what?
Don’t leave without a plan. It’s easy to ask the question, get dismissed, and say, I tried. Have a follow-up question prepared. For example, ‘If you aren’t sure how to help me, who can you send me to that might have some expertise?’ Or, ‘Does this particular hospital have a clinic that treats sexual problems?’ Or, ‘Do you know a gynecologist or urologist who’s good with these kinds of problems?’ If you want counseling, ask for that.

What happens if you still get no answers?
I created Will2Love for that problem! It came out of my long career working in cancer centers and seeing the suffering of patients who didn’t get accurate, timely information. When the internet became a place to get health info, it struck me as the perfect place for cancer, sexuality and fertility. Sex is the top search term on the Internet, so people are comfortable looking for information about sex online, including older people or those with lower incomes.

Also, experts tend to cluster in New York and California or major cancer centers. I only know of six or seven major cancer centers with a sex clinic in the U.S. and there are something like 43 comprehensive cancer centers!

We offer free content for the cancer community, including blogs and forums and resource links to finding a sex therapist of gynecologist. We also charge for specialized services with modest fees. Six months is still less than one session with a psychologist in a big city! We’re adding telehealth services that will be more expensive, but you’re talking to someone with expert training.

What can doctors do better in this area?
For health care professionals, their biggest concern is, ‘I have 40 patients to see in my clinic today and if I take 15 extra minutes with four of them, how will I take good care of everybody?’ They can ask to train someone in their clinic, like a nurse or physician’s assistant, who can take more time with each patient, so the oncologist isn’t the one providing sexual counseling, and also have a referral network set up with gynecologists, urologists and mental health professionals.

 

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The Science of Passionate Sex

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How to have hot sex, according to science

By Scott Barry Kaufman

Our culture is obsessed with sex. Everywhere you look is another article on how to have hot sex, harder erections, mind-bending orgasms, and ejaculations that go on for days. What people seldom realize, though– and which the latest science backs up– is that this is exactly the problem.

There’s nothing wrong with desiring sex. I’m extremely sex positive. Rather, I believe it’s the obsessive focus on the pragmatics and mechanization of sex– in isolation from the rest of the person— that is making us actually less satisfied with sex. We aren’t integrating our sexual desires into the totality of our being, and our whole selves are suffering as a result.

In a series of clever studies, Frédérick PhilippeRobert Vallerand, and colleagues studied a concept they refer to as harmonious sexual passionpassion for sex that is well integrated and in harmony with other aspects of the self, creating minimal conflict with other areas of life. Harmonious integration of ones sexual desires frees one up to fully engage and enjoy sexual activity in an open, spontaneous, and nondefensive manner. Items measuring harmonious sexual passion include: “Sex is in harmony with the other things that are part of me,” “Sex is well integrated in my life,” and “Sex is in harmony with the other activities in my life.”

In contrast, those who have obsessive sexual passion have not well integrated their sexuality into the totality of their being. Their sexual desires remain detached from other areas of their self as well as other domains in life. This leads to more narrow goals, such as immediate sexual gratification (e.g., orgasm), and leads to more of an urgent feeling of sex as a goal, compelling us to perform, instead of us being in control of our sexuality. This can significantly limit the full enjoyment of sex as well as life. Items measuring obsessive sexual passion include: “I have almost an obsessive feeling for sex,” “Sex is the only thing that really turns me on,” and “I have the impression that sex controls me.”

Across a number of studies, the researchers found that these two forms of sexual passion– obsessive and harmonious– differ remarkably in the way sexual information is processed, and how sexual activities are experienced. During sexual activities, obsessive sexual passion was related to negative emotions. Outside of sexual intercourse, obsessive sexual passion was related to intrusive thoughts about sex, conflict with other goals, attention to alternative partners, and difficulty concentrating on a current goal when unconsciously viewing pictures of sexually attractive people.

Obsessive sexual passion was also related to the biased processing of information. Those scoring higher in obsessive sexual passion were more likely to perceive sexual intent in ambiguous social interactions as well as to perceive sexuality in words that don’t explicitly have a sexual connotation (e.g., “nurse”, “heels,” “uniform”). Obsessive sexual passion was also related to violent actions under threat of romantic rejection, as well as greater dissolution of romantic relationships over time.

In contrast, harmonious sexual passion showed much greater integration with more loving aspects of the self, as well as other life domains. For instance, participants were asked to list as many words as they could in 1 minute related to the word “sex”. Those scoring higher in harmonious sexual passion were still sexually passionate beings: they listed quite a number of sexually-related words. However, they had a more balanced profile of purely sexual representations (e.g., “penis”, “breasts”, “vibrator”) and sexual-relational representations (e.g., “intimate,” “caress,” “intercourse”). In fact, the magic number seemed to be a ratio of 2: once the number sexual words outweighed the number of sexual-relational words by a factor of 2, there was a substantial increase in obsessive sexual passion and a marked decrease in harmonious sexual passion.

Those scoring high in harmonious sexual passion also showed greater control over their sexual drive. Whenever a sexual stimulus was subconsciously encountered (e.g., a beautiful person), they were able remain on task (which was to identify natural vs. artificial objects). Harmonious sexual passion was also related to less sexually intrusive thoughts and was unrelated to attentiveness to alternative partners. This greater integration and absence of conflict led to higher relationship quality over time.

It’s important to note that obsessive sexual passion is not the same thing as sexual compulsivity, or even sex addiction (although it is still hotly debated whether sexual addiction really exists). Even though obsessive sexual passion was correlated with negative emotions during sexual activity, it did not lead to greater feelings of distress. Also, both harmonious and obsessive sexual passion were related to loving and enjoying sex-related activities.

In fact, both harmonious and obsessive sexual passion were equally correlated with sexual desire. This is a really important finding, because we have a tendency to stigmatize those with greater sociosexuality in our society. Those with a more unrestricted sociosexual orientation are more willing to engage in casual sex, and report greater sexual desire and frequency of fantasizing about sex. These results suggest that sociosexuality itself is not the problem; rather, it’s how your sociosexuality is integrated into your identity and other areas of your life that really matters.

Perhaps instead of our cultural obsession with sexual performance, we should shift more towards helping people accept and feel comfortable with their sexuality, embrace sexual passion, and help them harness that passion in ways that bring joy, vitality, and openness to all areas of their life.

Complete Article HERE!

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How Lube, Dildos And Dilators Are Helping Cancer Survivors Enjoy Sex After Treatment

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Tamika Felder, a cervical cancer survivor, founded the nonprofit Cervivor to help fellow survivors navigate the jagged path back to sexual health.

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“I don’t know if readers are ready for what I’ve got to say!” Tamika Felder chuckles over the phone. “I just don’t think they’re ready.”

If you’re a cancer survivor, you should be, because Felder, 42, is an intimacy advocate who dedicates her life to helping cancer survivors navigate the oftentimes brutal path back to sex and pleasure. She was diagnosed with cervical cancer at 25, and spent the next year getting chemotherapy, radiation and a radical hysterectomy. She wound up with “bad radiation burns from front to back” as well as vagina atrophy, shrinkage and dryness, all of which led to painful sex.

“I knew at 25 this just couldn’t be it for me. I knew I wanted to have sex again, and I wanted to have good sex again,” she says. “It takes time, but it’s absolutely possible.”

Felder founded Cervivor, a nonprofit that educates patients and survivors of cervical cancer. She also works with both women and men struggling to regain their sexuality and intimacy post-treatment. Many survivors aren’t aware that there are items, exercises and treatments that can help them. Felder spoke with Newsweek about what people can do to experience pleasure again, even if it’s different than it used to be.

What exactly do you do?
I am not a doctor, I’m patient-turned-advocate who is passionate about the total life beyond cancer—and that includes the sensual side. Cancer treatments are saving our lives, but they’re also damaging our lives. I knew one guy who had to have his penis removed. That’s a life-saving surgery but how do you help that patient navigate life after? I’ve counseled women who survived gynecological cancer, whose vaginal canals meshed so close together that their doctor can’t even fit a speculum inside. What does that do for the quality of life for a woman like that? You have to offer alternatives! Maybe she can’t have penetration through the vaginal canal, but I expect the medical community—her hospital or cancer center—to help her navigate to a good quality of life. Because part of a good quality of life beyond cancer is your sexual self. Doctors have to talk more freely about that.

What if they don’t?
If your clinical team doesn’t raise the concern with you, you need to speak up. Email them or call them on the phone if it’s too hard to do it face-to-face. Find your voice. If something is not functioning the same way or how you think it should be functioning, speak up.

Now that you’ve identified a problem, what are some of the ways to deal with it?
Dilators: Whether you have a partner or it’s all about self love, dilators are important because they stretch out your vagina. Start with a small size dilator and move up. If you need something more, take a field trip to a toy store and get different sized dildos and vibrators. With some cancers, if you don’t use your dilators, your vaginal canal—or whatever is left of it—can close back up, so it’s important to follow those suggestions. Other people think, If I’m not dating now it’s not an issue. No! You need to deal with it now so when you’re intimate with another person you can be ready. Practice makes perfect.

Lubrication: If you’ve had any type of gynecological cancer, lube is going to be your best friend. After chemotherapy and especially radiation, your vagina can be very dry. Women deal with it as we age, but radiation causes you to go into menopause early. For cervical cancer, not only do you have external radiation but also internal radiation. Lube is important when you become sexually active again, because your body isn’t producing moisture on its own. Otherwise you’ll have abrasive sex—it will hurt to enter the vaginal walls.

You have to find out what works for you. Coconut oil is perfect for putting in your vagina and using as lube. A little goes a long way. I also like Zestra, an arousal oil. It’s a natural lubricant. For women who may have slow libidos, you put it on your clitoris and labia and experience what some people call a tingling experience. They call it the “Zestra Rush.” It’s a slow progression of warming up and you’re like, Oh! It still works!

Pocket Rockets or Lipstick Vibrators: These bring blood flow back to the vulva. I don’t care if you’re a southern Baptist from the Bible Belt, I want you to get a pocket rocket and take it with you when you travel and use that sucker so it can help the blood flow. There are lots of fun toys out there that can help. My favorite one is the Ultimate Beaver. Order discreetly online or take a fun field trip to an adult toy store.

Mona Lisa Touch: There are new therapeutic procedures, like the Mona Lisa touch laser treatment, that helps with vaginal rejuvenation. If you’re a reality TV fan like myself, you might think, it sounds like what the Real Housewives do! It’s not just something that rich people do. In many cases, insurance won’t cover it, but we’ve seen with the right doctor and the right type of letter, they’ve gotten insurance to cover it. Or, you may find a doctor willing to donate or discount services. Take a chance and write them, saying, “This is what happened to my vagina after cancer, and this is how you can help.”

Pay Attention to Pain: Make sure you heal properly. You may have healed on the outside but it doesn’t mean you’re healed internally. If you’re properly healed but still experience pain, have a conversation with your doctor.

What pitfalls should people be aware of?
A lot of people focus on what their body was like before cancer. I hate to say, “You have to give that up,” but you do in order to move forward. Your body has changed. Your objective shouldn’t be an orgasm, because maybe your body won’t do that again. It pains me to know that women have vaginal canals that have closed and they’re just living a life where they think they can’t have pleasure stimulated vaginally anymore. It’s not fair. They weren’t given the resources to help them along the way.

How did you redefine sex and intimacy for yourself?
In my own eyes and my husband’s eyes, I’m a perfect 10, but if I’m walking down the street, I don’t look like the magazine covers. I’m a plus size woman but I do love myself. It starts with that. Part of the homework I give men and women— When you look at yourself, tell me what you see. They always start out with the negative. I’ve never had anyone, no matter the age group, in all my cancer talk about sex and intimacy, who’s started with anything good. So I flipped it: Tell me what you love about yourself? You can go get these toys and procedures, but at the end of the day, the true pleasure comes from how you feel about yourself. That’s going to make your sexual self stronger. I’m not saying, don’t go for pleasure, but it really is how you feel about yourself.

Where can people go for more help?
Sites like Memorial Sloan Kettering and Dana Farber have amazing resources. Find out if your cancer center has a program to help cancer patients reclaim their sensual side, like this one at Dana Farber. Or find someone in your local area through the American Society of Sex Educators, Counselors and Therapists.

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