Campaigner Vicky Phelan was the guest editor of today's Feelgood magazine. As part of that special Margaret Jennings looks at the complex issues faced by couples after a woman is diagnosed with cervical cancer.
Intimacy and sexual difficulties between partners can be a taboo subject at the best of times, left unspoken not just among the wider world of family and friends, but also between couples behind the closed doors of the bedroom.
However, for many cervical cancer survivors, the medical intervention they receive has such a devastating effect on their bodies that sexual dysfunction is almost an inevitable outcome in the aftermath of treatment.
That too was left unsaid, until campaigner Vicky Phelan spoke up about her own experience to fellow survivors in the 221+ cervical cancer patient support group, formed last year for those whose smear tests were incorrectly diagnosed. The relief was palpable as women realised they were not the only ones struggling alone.
Whether patients have had internal radiation treatment or surgery, their vaginas can be left so sensitive that they painfully bleed at touch, or the canal is left atrophied (shortened or narrowed), and many women are also thrust into a sudden early menopause, with all the symptoms that brings in its wake.
While family and friends are celebrating their loved one’s survival, the woman is herself left dealing with variations of this scenario — the emotional and psychological fallout, as well as the physical.
“Most women who have had the treatment will tell you, trying to have sex is very painful because it has a huge effect on your insides basically. And no one talks about this — I couldn’t believe it,” says Vicky. “They don’t prepare you for it, even though you know when you get cancer in that direction (of your body), that it’s going to affect you somewhat.
“I haven’t had sex in three years — that’s the reality. We tried once or twice and I’ve spoken to some of the women in the group — and they agree it’s like having a red hot poker inside you because what happens is when you have internal radiation treatment, any of the tissue that’s left becomes what they call friable. So literally you can bleed at touch. I bled both times and I was in agony for days.”
Women don’t talk about it, and they might feel shame.
It’s an added emotional burden to the huge vulnerability of having cancer: “It’s very hard to enjoy sex, get enjoyment out of something when you know you have cancer down there. It’s very hard to switch your brain off from that thought and all the invasive treatment you have had — being poked and prodded, and then here you are trying to have sex…”
Women who have surgery or radiation treatment are often left with a condition called vaginal stenosis; the scar tissue can make the vagina narrower, less able to stretch, or even shorter, making any type of penetration extremely painful.
If the issue of potential sexual dysfunction is addressed at all it is when patients are given plastic dilators and told they need to use them — or have penetrative sex, very regularly, to help stretch the vaginal walls.
“The women are handed a pack of dilators and they’re told ‘use it or lose it’. They’re meant to keep sticking these hard plastic tubes up them so that their vagina doesn’t atrophy — which for some women has happened,” says Galway-based psychosexual and relationship psychotherapist Linsey Blair, who has been holding workshops on this issue with members of the 221+ group.
“And for the women, the dilators are painful and there is no desire. Penetrative sex is often the last thing on their mind; they don’t like that area of the body, or to put anything else up there. It becomes a whole unpleasant experience.”
“Sex becomes something they have been told they have to do to prevent the vagina shrinking [al most entirely]— which has happened to some of the women in my workshops.”
The average age of the women in the 221+ group is 40.
Donna*, who had a radical hysterectomy as part of her treatment for cervical cancer just after as she turned 40 in 2015, says nothing was outlined to her about how it would affect her sexually.
Married for 16 years, she says she and her husband have attempted penetrative sex twice in the past three years, but it has been too painful.
“My whole cervix was removed and therefore the vagina was shortened so everything is much more uncomfortable now and painful — even my libido has just plummeted as well and I’m going into early menopause. I just don’t want to attempt sex.
“The last two years have been awful and I’m surprised my husband puts up with it. It’s definitely impacted on our relationship. We are still close to each other but it’s a different type of relationship - hopefully, we will regain something,” says Donna.
“The whole mental and physical aspect is just another thing to try and deal with and I just feel totally powerless; it feels like I’m not in a proper marriage any more, and even though I know there is more to marriage than that, it is a huge part of any relationship.
While Donna expresses that cervical cancer and the consequences of treatment has felt “like a betrayal” by her body, Linsey Blair, says the women need to learn to love their bodies again after the horrendous treatment they have been through.
“The women can feel [that] their body has failed them and intimacy is another place where they are failing. So what I am trying to get the women to do is to like their bodies again, get to know their vaginas in a very different way — to mourn what they have lost and get to know what they have.”
Linsey, who specialised in psychosexual work for several years in Britain prior to coming to Galway, says: “A lot of people think sex therapy is about having penetrative sex and how do we get back to where we were prior to the diagnosis and all this happening. And I guess what I’m saying is, you won’t get back to the way it was and it’s about thinking about how you can have sex differently and expanding the definition of sex.
“For a lot of these women they won’t achieve penetration, because their vaginas may be only 2cm long and it’s very difficult. Equally, if there’s pain and blood, the men will often develop erectile problems because sex isn’t sexy,” she says.
Her work involves encouraging the women to reconnect with themselves: “Because what has happened is they have been through horrific medical procedures... Some of them have been hollowed out — with radical hysterectomies — and their vagina is not a happy place for them.”
And for those pushed into early menopause, “It’s all exaggerated; this is a fast-forward of your body and so all the symptoms are much worse — the shrinkage of the vagina, the thinning of the walls, the sensitivity — and the women aren’t really told how to handle this,” she says.
“Their partners often don’t want to put any more burden on the woman, so they are silenced into that, and they may also feel they are expected to perform because sex is something they have been told they have to do to stop the vagina atrophying.
“And there’s hardly any body-touching or any foreplay and the men can end up feeling used and upset, but are unable to talk about it. If experiences happen like that a few times — and it’s desperately upsetting — and the couple isn’t able to talk about it, they are going to stop having sex, because it drains them. So what I tell couples to do is to go back to being a courting couple (leaving out the erogenous zones) with the end goal being an emotional connection as much as the physical.
“I tell them that sex is going to be completely different than what it was, but it may be better — and I genuinely believe that. When penetration is taken out of the picture for a bit and a lot more things happen, there is space for other parts of the body to be included and sex becomes a lot more sensual,” says Linsey.
“Both partners are mourning for the relationship that was and for the loss of that kind of sex. It’s not going to look like that again, but it might look like this, and that might be softer and more wonderful than what they had, moving on to a new place together.”
Donna is a pseudonym
To read the full Feelgood Edition which has been guest edited by Vicky Phelan in e-edition format go here: http://edition.pagesuite-professional.co.uk/html5/reader/production/default.aspx?pubname=&edid=052c0f68-7a40-44d1-ba08-9db0e1fc6828