A new guide on the subject will be published in the winter of 2022!
“Chronic pain and sexuality — pleasure as a part of life” is a new guide to be published in the autumn, produced in collaboration with the writing team assembled by the Finnish Pain Association and Henna Kekkonen. The guide will be published as an E-guide, and it can be downloaded for free. The purpose of this new guide is to convey information and experiences to anyone interested in the topic. It also aims to help social and health professionals paying attention to and speaking out about sexuality as part of rehabilitation- and care work.
To support the design of the content of the guide, an online survey was conducted in the spring of 2021, which mapped the thoughts and experiences of people experiencing chronic pain, their relatives, and social and health professionals in relation to the topic. The purpose of the survey was primarily to find out what information people need for the future guide and what thoughts the topic evokes in them.
A total of 98 responses were received to the survey over two weeks. The survey was an open online survey in which responses came anonymously, and no identifying information was collected from respondents. The questionnaire was answered by 5 close relatives, 64 people with prolonged pain and 29 social or health professionals. Of the social and health professionals, 7 respondents, or 24.14 per cent, had additional training in the field of sexology. 7 respondents (10.94 %), who themselves also had chronic pain, had additional training in sexology.
Survey responses
EFFECTS OF CHRONIC PAIN ON SEXUALITY
The survey inquired with one question how the pain had affected sexuality. 82.4% of respondents named fatigue as the biggest factor for affecting sexuality. Respondents were able to choose several influential things, and the results were as follows:
- Reluctance 77 %
- Effect of mood on sexuality 77 %
- Functional realization of sex (e.g., postures, erectile dysfunction, the difficulty of orgasm) 71.6%
- Effect of medicaments on sexuality 67.5 %
- Pains that increase during sexual intercourse 51,3 %
- The fear or uncertainty of contact 43.2 %
- Communication difficulties with a partner 29.7 %
“Distortion of sensation of touch / numbness, the sudden bursts of pain and its effect on the sexual situation, hope that the partner would dare to touch the pain point as well”
“Increased pain after sex”
“Intercourse pain”
“Difficulty even finding a partner”
“Sensory hypersensitivity”
CONVERSATION ABOUT SEXUALITY
36.5 % of the respondents had not talked to anyone about issues relating to sexuality. On the other hand, 14.8 % of the respondents did not feel the need for it. Most of those who had talked about sexuality had talked to a doctor (22.9 %) or a nurse (21.6 %). 18. 9% of the respondents have had a conversation about sexuality with a physiotherapist and the same amount was appointed a sexual counsellor or sexual therapist. Only 6.8 % of the respondents had discussed the topic with an occupational therapist. Three of the respondents also named a psychologist and two respondents said they talked to friends.
41.1 % of respondents said that the conversation usually starts at the initiative of the client. Only 10.9 % of the respondents said that the conversation had been started by a professional. 47.95 % of the respondents to this question had not discussed sexuality with anyone.
However, the respondents would clearly like to talk most about the topic with a sexual counsellor or therapist (69.3 %). 28.6 % of the respondents wanted to talk to a doctor, 25.3 % to a nurse, 25.3 % to a physiotherapist, and 16 % to an occupational therapist. 20 % of the respondents, on the other hand, said that there was no need for discussion. Two of the respondents mentioned friends and a partner.
“Someone who would get the pain off / or would alleviate it”
“Anyone who could help.”
When asked how important you consider it for a social and health professional to address sexuality issues as part of rehabilitation or treatment, those experiencing pain themselves and its close answers came the average value of 4,4(on a scale of 1 = not at all important, 5 = very important). Bringing up sexuality is therefore in a significant position in the role of a professional.
When asked how difficult it is for you to talk about sexuality issues as part of rehabilitation or treatment, people who experience pain themselves gave an average value of 2.6 (on a scale of 1 = not at all difficult 5 = very difficult). Professionals gave an average value of 2.2, so starting a conversation should be relatively easy for both professionals and clients. However, the percentages that indicate non-speaking and lack of discussion in this survey are relatively large in comparison with how easy the topic is described in here.
THE NEED FOR INFORMATION
68.7 % of the respondents think that they need information about sexuality issues. 16.7 % could not say and 9.4 % of the respondents did not feel they needed information.
” I may not need the information, but a discussion about how I’m doing in my life and discussion about sexuality. The caretaker should be the first who is speaking about sexuality”
As many as 69.6% of the respondents said that they wished that they could get more information about the effects of medications on sexuality. The second most desired wish was that the respondents could get more information on the effects of the mood (55%), the effects of fatigue (50.5%), and the functional implementation of sex (49.4%). For the other answer options, respondents hoped to receive more information on the following topics as well:
- Reluctance 46 %
- Increased pain during sex 37 %
- Communication difficulties with partner (s) 29.2 %
- Aids for sex and pleasure 7.9 %
Free word
At the survey, comments were also collected from respondents in the form of free words. There were plenty of answers, of which here is just an excerpt. The purpose of the open responses was to make the respondent’s own voice´s to be heard and to use the responses to enrich the future guide. Unfortunately, there were no responses to the open answers about the experience of being seen or a positive treatment path. We are concerned about this, and we hope that in part this guide would be changing the matter.
“It would be highly desirable for professionals in different fields to receive training and thus courage in handling sex and sexuality issues in the client and patient work. Simply speaking or listening is not always enough, but concrete advice and information is also needed. It would be important to remove the shame and normalize the subject. It seems unfair that sexual health / therapy services may not be equally accessible to all, for example due to the availability or price of services.”
” Aside from the topic, the pain experience itself is underestimated in every place and then a fully crushed feeling is obtained. At that point, there is no feeling that you would like to open up, especially about sexuality.”
” A person with chronic pain should always have a few appointments with a sexual counsellor or sexual therapist routinely. There you could address the topics of sexuality because pains always affect it! Physiotherapists should also be better equipped to talk about sexuality because however they come to the client’s skin. A very important topic! My own experience is that sexuality is not spoken up in healthcare by their own initiative with the client. A few times when I have tried to raise the issue myself, no discussions or receptions about the subject hasn’t been born.”
” Even today in some social and health care services, a culture of talking about sexuality can be difficult. In many places, it is considered that sexuality does not belong to that particular unit of work. It is very sad. There are also places where it is thought not to talk about sexuality with clients because it is not part of the job. These places have been e.g., home care, child welfare, family work, substance abuse users. Of course, there are humans who differ from others. I think that it is precisely the professional who needs to be the one to speak up and communicate that sexuality can be talked about, it belongs to humanity.” ” I have experienced a lot of underestimations from the health care side. Pains are specifically activated during intercourse. For example, a gynecologist comments that “there can be no such pain”.
Afterword
We are grateful for every response we received to the survey. Every answer was important.
Based on this, it is great to start making a guide that would reach people around the topic. The subject is broad, and pain is always a subjective experience. Making a guide is a matter of honor for us, but also a challenge. We would like the guide to be respectful of sexuality and enjoyment, to highlight the diversity of sexuality and sex, and it to be as sensitive as possible. We want to address the subject boldly but tenderly. In with a versatile and understanding.
The writer team includes
- Henna Kekkonen, Occupational therapist, Specialist in Sexological Counselling (NACS)
- Tiina Manninen, Physiotherapist, Basic Sexology
- Päivi Heinonen, Registered nurse, Specialist in Sexological Counselling (NACS)
- Kira Salminen, Registered nurse, Specialist in Sexological Counselling (NACS)
- Maija Ikonen, Registered nurse, Sexual therapist