Recent studies

The impact of ovarian cancer and its treatment on sexual function

Doctors and nurses rarely talk to women about sexual issues when they are diagnosed with ovarian cancer. One reason why sex is neglected is lack of knowledge about the problems that occur, so doctors and nurses are not sure what advice to give. I work for Leeds University and have carried out a study with doctors, nurses and patients to find out how ovarian cancer and its treatment affects sex.

Many of the women I spoke to thought they were the only one experiencing changes in sexual activity and found it reassuring that they were not alone. I hope that by reading this article, if you are having a sexual problem, you too will feel reassured that this is not unusual and be encouraged to talk to someone about your situation.

I have split this article into two sections - how sexual activity can be affected from diagnosis and through treatment, and how it can be affected after treatment. Quotes from the women involved are included, as they are real examples of how they felt. Not all the women experienced all the problems discussed below. I have included a range of problems to show the different ways in which sex may be affected - you may be able to relate to some of the things said by the women involved in this study, or you may find that you have similar experiences in the future. I hope that my study (which has been published in a medical journal for doctors) will increase the awareness that sex is affected, and that doctors and nurses will start to talk to more women and help them with any problems that they may experience.

Diagnosis and treatment
As expected, the diagnosis was a big shock. At first many women were concentrating on the impact on their life, the need for chemotherapy, and the suddenness of changes in their health, and not really thinking about sexual activity:
‘It was such a shock, it is so quick, I wasn't in a fit state really. Then you have your life to organise'.

The removal of their womb and/or ovaries, and the physical effects of the operation, affected how women felt about sex. Sexual activity was still quite low priority for many women after the operation. Some women did not have sex whilst they were having chemotherapy. This did not bother most women, as they were concentrating on having chemotherapy and coping with its side effects. Others wanted to carry on having sex:
‘At first when my hair came out I felt like a monster. I felt nobody likes me, I suppose having sex was important because it showed you were still attractive to your partner and losing the hair didn't matter'.

Some women found that their feelings about themselves had been affected:
‘I didn't know how he could kiss me when I've got this? And especially when I didn't have any hair'.
‘It took me a bit to get over the surgery. You feel like you're not a woman any more, I was so upset'.

After treatment
After the treatment many women started to think more about sexual activity. Lots of women found that their interest in sex had changed - quite often they found it was less. Some women found that they had no interest at all:
‘From my waist down I feel dead inside me. There is no emotional feeling whatsoever. It was just like someone flicking a switch. It s gone completely. It s upset me getting used to that feeling'.

Most women were not sure why their interest in sex had changed, and would have liked a doctor or nurse to have told them that this might happen so that it was not a shock when it did. Some women were surprised by how they felt when they did have sex again:
‘I was so relieved the first time we had sexual relations I burst into tears. He said "what s the matter?" and I said, "I never ever thought that I would ever feel anything again". I just thought I would be so numb and horrified'.

Some women experienced dryness or pain when they had sex:
‘It s all so painful, I m that tender inside. You can't do anything at first, you feel different inside and more tender and you've always got to be real careful.'

However, over time many of these problems reduced and women started to enjoy sexual activity again. Lubricants such as KY Jelly can be very helpful if you experience dryness and are available at all chemists. Some women were frightened of sexual activity:
‘It's just fear. Fear that I might have done something that I shouldn't do. And, I mean it s all in my head. If you get the slightest pain or anything you think something is wrong. It might hurt something or damage my inside or cause more problems'.

There is no evidence to suggest that intercourse causes damage - if you are worried at all about this, please talk to your GP, or your consultant or nurse at the hospital. Many women found that the changes in their feelings about sexual activity affected their relationship with their partner. Some felt under pressure to continue having sex to maintain their relationship:
‘That sort of relationship doesn't matter to me. I m doing it basically for my husband's sake'.

Some couples did not have sex again after the diagnosis and the women felt guilty:
‘It worried me, would he stay with me? Would he go off and have an affair?'

One woman had not completed her family and felt that her partner would leave her because she was no longer able to have children.
Despite these fears, the partners did stay with the women, whether or not they were having sex:
‘We are so close now, it just doesn't matter'.

Comment
This study showed that many women experience problems with sex after being diagnosed with ovarian cancer. I would like to stress, though, that women rarely experienced all of these problems - most just experienced one or two, and many problems eased over time. I would like to thank the women who were involved in this study for their time, and for sharing their thoughts and feelings with me. I hope that their openness will encourage doctors and nurses to talk to women about the possible effects on their sex life and on their relationship with their partner, and that women will not feel as alone when trying to cope with changes in their feelings about sex.

Editor's Note: I d like to thank Maxine for allowing us to share the results of her study on a subject which has been sadly neglected. I m sure that members will feel more confident after reading this article to ask for he/p. Please write in and share your experiences with us, not only those who have ovarian cancer, but also their partners (male or female), they might even make us chuckle! Please address all letters/articles to me and mark them confidential for the Newsletter Editor Confidentiality and anonymity will obviously be respected.