BRiC's Collective Voice: "Let's Talk about Sex" or lack of it; 23rd Feb., 2020

‘Let’s talk about Sex’, or lack of it. How breast cancer impacts our sex lives.

“I don’t know where my libido is?” “I used to be sexual and have a full on firey sex life before breast cancer, but that has all gone now” “Sex? It’s all in the past.”

There are two major ways by which breast cancer affects our sexual health: it can demolish our libido, of course due to hormonal deprivation, and it can cause pain, atrophy, and soreness, probably also due to estrogen deprivation, so the two are not mutually exclusive.

“It is so painful that I try and put it off” “I cry after having sex” “ The creams and lubricants are OK but don’t make me feel sexy” “It is impossible at times.”

Then there is the issue of self-esteem and self-confidence, that is shattered through physical changes. Fatigue does not help either.

“I don’t look sexy”, and “I don’t feel sexy”. “surgery has left scars” “ I don’t feel confident about my body”. “I am exhausted”.

Failing to feel like what we used to be and what breast cancer has left of us in that department can impact heavily on our sexual health and our relationship with our partners:

“We have come to terms with it, that sex is something of the past.” “I think that he will probably leave because of this” “He is understanding but I do worry” “ I try and explain but it was so long ago that he isn’t convinced its psychological”.

For those of us in search for a new partner it also takes its toll:

“I’m not sure I’m going to find anyone who would put up with this”, “It is difficult to explain.”

The list continues…..

Sexual health does define a major part of our womanhood. The effects are multidimensional and can impact our self-esteem. For some of us the thought of having sex is terrifying, the pain that it leaves us with prevents us from initiating sex and as such we can get into a trapped cycle of avoidance.

The topic itself is not spoken about, it is not discussed with our oncologists as a possible side effect, in fact, the majority of us feel the same: that we cannot talk about it. The lingering effects are explained through Tamoxifen and the AIs that hinder sexual health considerably.

Women’s sexual health post breast cancer should be given the credit it deserves. In research you can see it discussed in passing, as part of a bigger package of problems we face, but it deserves its own stand as it defines a big part of who we are. There is a difference between choosing not to have sex and not being capable of having sex, because with the latter we have little to no control over it.

If you are a woman in the UK with breast cancer and wish to join our private psychoeducational group please message us here.

#BRiCteam

Weekly Discussion Summary ~ Impact on sexuality and sexual health

The impact of breast cancer on sexuality and sexual health is a taboo subject for many women.

Here at BRiC, we tackle the most painful and sensitive aspects of our experience of primary and secondary breast cancer. In this week’s discussion, we shared how our sex lives have been affected by breast cancer, for the most part in painful ways. 

For many of us, this was the first time we had shared our feelings and it became clear that a huge number of us are suffering in silence and have no idea where to turn for help.

Breast cancer fundamentally changes us, mind and body. We may lose our breast or breasts, we have scars, we may be unsymmetrical, we may have chosen or have been unable to have reconstruction. For many, breasts are powerfully associated with womanhood and sexuality. Is it any wonder that our sense of ourselves as sexual beings is profoundly altered?

Our confidence and enjoyment of our bodies is shattered by brutal treatments like radiotherapy and chemotherapy, but we also contend with early, severe and prolonged menopausal symptoms as a result of hormonal treatment. These effects often worsen and are impacting us years after the end of so-called active treatment - many of us shared that we experienced a loss of libido, others talked about vaginal dryness which can make intercourse painful. Some of us shared that intimacy is the time when we most miss our breasts, maybe we miss the sensations we used to experience, maybe we miss our previous abandon, maybe we feel inhibited or undesirable as a result of our weight gain. Though our individual concerns varied, our feelings were startlingly similar:

Some of us fear intimacy, we avoid it.
Some of us crave closeness and intimacy but are afraid to initiate it.
Some of us feel single even when we are in what appear on the outside to be ‘happy’ relationships.
Some of us are single and fear having to build a relationship with a new partner and so we choose to remain on our own. 
Some of our partners have walked away from us, leaving us abandoned and alone. 
A few of us experience strong sexual feelings which our partners do not seem to reciprocate.

Very few of us had received any medical or psychological support for these issues. Sex is not mentioned or talked about when we ask about the side effects of treatment. No help is offered. 

We often have no one to confide in and we especially don’t want to talk to our partners - we fear their responses or rejection. We may drift into a sexless relationship, trying to pretend to ourselves that it doesn't matter while we silently die inside. So many of us who had enjoyed sex pre-diagnosis found our womanhood stripped from us by cancer.  

We worry that without sex, our partners may seek it elsewhere. Some of us have sex for our partner's sake but we don't enjoy it. For some, our partners are our carers and are no longer our lovers. Then, comes the expectation for a return to normal only to find loss.

Satisfying sexual activity was experienced by a few of us. We shared that trust, communication and sharing vulnerability and experiencing intimacy in new ways had helped. But the few of us who shared our success stories were hugely outnumbered by those with ongoing difficulties.

What can we do?

Breast Cancer Care have produced a good leaflet about sex and breast cancer treatment https://www.breastcancercare.org.uk/…/sex-breast-cancer-tre…
. 

This blog by the breast surgeon Liz O’Riordan, herself diagnosed with breast cancer, also offers lots of advice 
http://liz.oriordan.co.uk/BreastCancerBlog_files/lets-talk-about-sex.html

Her suggestion is to have a “box of tricks” including a good lubricant. Some are available on prescription so we don’t need to pay for them. 

YES is a highly recommended water-based product which can be used as an internal moisturiser to help relieve dryness and irritation and works better than silicone-based lubricants. 

Another popular product is SYLK. 

We also know that coconut oil or Vitamin E oil can be helpful. 

A small vibrator can help with feeling dry and tight and it can be worth considering dilators which can help make sex less painful.

In her blog, Liz O’Riordan explains that oncology appears to be reviewing its position about the use of topical vaginal oestrogen for breast cancer patients - available for women who experience this symptom as part of their menopause - she says that one school of thought was that if women used them, the tiny amount of oestrogen that they would absorb might increase the risk of the cancer coming back. However, small trials have shown no obvious increase risk in recurrence for women taking Tamoxifen. This is important because it is a very effective treatment and some of our members shared that this had transformed their quality of life. It must be a decision made by each woman and her doctors based on her individual situation.

A good shop that comes highly recommended by a psychosexual counsellor is: 

“Sh! is a sex shop truly worth shouting about. When it opened in 1992, Sh! was the first ever ‘women only’ erotic boutique, designed to give ladies a welcoming, safe place to shop for intimate items and get sound sexual advice.”

If you are a woman living in the UK with a breast cancer diagnosis and you would like to join our private group, please send us a message via our Public Facebook Page.

Weekly Discussion Summary ~ Intimacy and Relationships

It can feel like breast cancer robs us of our womanhood, profoundly changing our intimate relationships - some deepen, some become fragile, some break.

In this week's discussion, we shared how our breast cancer diagnosis had impacted on partner relationships and intimacy.

Physically, breast cancer treatment brings many changes in addition to the obvious one - surgery to remove the cancer. Treatments such as chemotherapy and radiotherapy have long term side effects such as fatigue and pain. Ongoing hormone treatments and invasive surgery also impact on our reproductive system and sexual health inducing early or prolonged menopausal symptoms such as a loss of libido and vaginal dryness, which can lead to painful sexual intercourse.

Breast cancer calls into question our relationship with our bodies, impacting on how we feel as emotional and sexual beings; we are left confused, vulnerable and some of us shared that we felt unattractive and undesirable. An understanding partner may cease to want intimacy for fear of hurting us; a less understanding one may simply walk away. We struggle to know how to communicate. Many of us mourn the loss of libido and our once satisfying sex lives feel like a thing of the past, and although in many instances we continue to have a loving relationship with our partner, the lack of intimacy makes us feel very sad.

For those of us with a partner, some receive strong support, a partner who loves their new body without question, and with patience, a continuing sexual relationship that remains satisfying. However, many of us reported the opposite: a partner who was no longer interested in us sexually, a partner who did not want to talk about sex, and, for some of us a partner who walked away from us when we were at our most vulnerable.

Single women face many challenges when meeting someone new, starting with how to tell them about the cancer. They’re going to find out someday when intimacy reveals a body that is different. Whether we are scarred, flat chested, lopsided or reconstructed, our bodies are healing and hurting, and our head is often full of emotional pain. However, for those who had overcome these hurdles, the experience of intimacy with a new partner can restore their faith in their body’s ability to feel pleasure.

Couples counselling may help floundering relationships to flourish again. Some women had met new partners following breakups just before, during, or after treatment. These women bring hope to those of us seeking new relationships, telling us that the right partner won’t mind how our body looks but is little comfort to those of us struggling to accept our new bodies and are daunted at the prospect of being on our own forever.

Communication, self-compassion and self-help can help us to maintain our relationships in the longer term. Our diagnosis impacts on our partners too. We need to somehow find away to adapt individually and together in the face of the changes that breast cancer imposes on us. We heard that lubricants and medications for vaginal dryness and pain are available, via GP, over the counter and online, and can make a huge difference.

Our discussion included women with primary and secondary diagnoses, and for the latter, treatment may be continuous and ongoing. Some reported a strengthening of relationships through the shared experience of bad news, bringing them closer as they seek an intensity of experience with their partners as in all areas of life. Communication about what really matters can become easier. Or, the opposite may be true, with what really needs to be said remaining under the surface.

Whether we were single, had an understanding partner, or our relationship was floundering, we shared an experience of loss and adjustment, not only during our active treatment, but many years afterwards. Loving ourselves may be difficult at the best of times, but when we’ve been through the trauma of a serious life-threatening disease such as cancer, we must, in our different ways, mourn the loss of the woman we used to be and the woman we thought we might become. Holding ourselves in self-love and believing we are worthy of the love of another may be helped by being kind to ourselves, giving ourselves little treats and big ones, from a new lipstick to a makeover and photo-shoot.

Whatever our experience of intimate relationships, it is clear that the support and sharing of our experiences and feelings was hugely valuable, even for those who found it too painful to participate. We learned practical ideas to help and found out that none of us are alone in our struggle.

This article may be of interest: https://www.medscape.com/viewarticle/774159_1

If you are a woman living in the UK with a breast cancer diagnosis and you would like to join our private group, please send us a private message via our facebook page https://www.facebook.com/resilienceinbreastcancer/

Weekly Discussion Summary ~ Impact of Breast Cancer on Intimacy/Sexuality

The impact of breast cancer and its treatments on intimacy and sexuality was the subject of our weekly discussion.

Sex is - generally-speaking - a private experience which takes place behind closed doors and not a subject which we discuss openly. This means that the difficulties that many of us experience with physical intimacy as a result of treatment for breast cancer remains hidden.

Breast cancer has an enormous impact on the way we view our bodies and our womanhood, and being intimate and sexual is a big part of that. Surgery, weight gain and the fear of recurrence all exact a toll on our libido and the way we view physical - and emotional - intimacy. Where once there was passion and pleasure now there is pain and numbness, and for many a profound sadness and sense of loss.

Women with oestrogen-sensitive breast cancer are given 5-10 year's hormonal treatment in the form of tablets and/or injections to reduce the risk of recurrence. Some of us have had our ovaries removed, either as an alternative to hormonal treatment, or because we are at risk of developing ovarian cancer. Whatever our individual situation, our discussion highlighted that being thrown into an instant surgical or chemically-induced, prolonged and severe menopause is much more intense than dealing with a natural menopause and can lead to the follow side-effects which can be particularly challenging - loss of libido, vaginal dryness, atrophy and bladder infections. Unlike women going through the menopause who experience these symptoms, HRT is not an option for women with hormonally sensitive breast cancer.

Our discussion, which included women with primary and secondary breast cancer, revealed that many of us had not sought support for our concerns, perhaps out of embarrassment, or a sense that we should be grateful for being alive and our sexual identities were a small price to pay for this; or perhaps we simply did not know where to go to get help.

What can we do?

Our GP can be a useful starting-point, although many of us shared that they do not always have the necessary knowledge. Some of us had had positive experiences at Menopause Clinics where we had been given practical advice about products which could help alleviate symptoms.

Breast Cancer Care have produced a good leaflet about sex and breast cancer treatment https://www.breastcancercare.org.uk/…/sex-breast-cancer-tre…

. This blog by the breast surgeon Liz O’Riordan, herself diagnosed with breast cancer, (http://liz.oriordan.co.uk/BreastCa…/lets-talk-about-sex.html

) also offers useful advice. We love her suggestion for having a “box of tricks” including most importantly a good lubricant. Some are available on prescription so we don’t need to pay for them. YES is a highly recommended water-based product which can be used as an internal moisturiser to help relieve dryness and irritation and works better than silicone-based lubricants. Another popular product is SYLK. We also know that coconut oil or Vitamin E oil can be helpful. Her advice is that a small vibrator can really help with feeling dry and tight and it can be worth considering dilators which can help make sex less painful.

In her blog, Liz O’Riordan explains that oncology appears to be reviewing its position about the use of topical vaginal oestrogen for breast cancer patients - one school of thought was that if women used them, the tiny amount of oestrogen that they would absorb might increase the risk of the cancer coming back. However, small trials have shown no obvious increase risk in recurrence for women taking Tamoxifen. This is important because it is a very effective treatment and some of our members shared that this had transformed their quality of life. It must be a decision made by each woman and her doctors based on her individual situation.

Sex and sexuality are intensely private subjects and we have made the decision not to summarise our discussion to focus on the things we can do to address the challenges we face. It isn’t our fault that sex can feel difficult and is not always spontaneous, but we have enough trust in our safe and confidential group to share some of our experiences, even if it feels hard.

If you are a woman living in the UK with a diagnosis of breast cancer and you would like to join our private group, please contact us by facebook message https://www.facebook.com/resilienceinbreastcancer/

#ResilienceDiscussion

Weekly Discussion Summary ~ Intimacy After Breast Cancer

Is it possible to be intimate, physically and emotionally, post breast cancer diagnosis?

This week we focused our discussion on the vulnerability that is often not expressed or talked about openly, because of the embarrassment that it brings upon us. While targeting a difficult, yet most needed to disclose subject, we talked about how surgery and breast cancer treatment can severely undermine our confidence about our breasts, our ability to be sexual, and form, as well as sustain, intimate relationships. One of our most powerful sexual organs, that used to be sensual, is now not. It is numb, scarred, and deformed, or no longer there. We talked about how this affected our womanhood, our sense of being sexual and the way in which we perceived our bodies.

For many of us: we are ugly, deformed, lop-sided or without breasts. For many, the effects of chemotherapy and hormonal treatments stripping off oestrogen from our body mean that intimacy and intercourse is difficult and very painful. Dryness and lack of libido adds to our problems. Feeling ugly and not confident dampens our ability to be close. We talked about how some creams may help with vaginal dryness and pain but when the drive is dampened for most of us, the pleasure is almost gone. For some, physical intimacy is loaded with fear, with rejection, and disability. What does this say about our womanhood? Our sexuality?

We talked about how for some, the role of an understanding partner helped. We often felt sorry for our partners, guilty sometimes, and felt that they were better off with someone else. Some relationships could be at stake due to the ghostly impact of fatigue and a lack of desire to be close. We concluded that the ‘new’ me post diagnosis is an ill-understood concept that brings with it many changes impacting relationships at a fundamental level. Emotional fragility doesn’t help physical incompetence and the latter fuels the former.

We wanted to have the ‘old’ me back. We talked about how the old me was pretty, sexy, and fruitful. But for many younger women, it is not possible to conceive to have children as a result of treatment anymore, escalating the impact of breast cancer on femininity.

We agreed that with time we could feel more confident about our body image, our intimate relationships, but we will never be the same. The scars of breast cancer diagnosis and treatment run deep, they plague our self-esteem, can rob us from our womanhood, and dampen our basic healthy desires. No, we are not the same, and for many of us we still struggle to understand who we are as a result of these fundamental changes. From the outside, we seem to be coping well, and moving ahead, but from the inside, it's another story. A story less told.

If you are a woman living in the UK with a diagnosis of breast cancer and you would like to join our private group, please contact is by facebook message https://www.facebook.com/resilienceinbreastcancer/

Thank you to Sally for the beautiful picture

#ResilienceDiscussion