I thought that title would be a nice attention grabber – and so it was. Why? Because patients living in chronic pain, and their partners, often accept diminished intimacy as a necessary evil. Moreover, it is a topic that likely is seldom discussed at office visits for many reasons including time, expertise, fear, embarrassment, or simply because it’s considered tabu by patients and conceivably by some non-behavior health clinicians. Perhaps its best addressed by a clinical psychologist, if one is available, because this is an issue that most often affects relationships, innermost feelings, mood, desire, euphoria, pleasure, and an entire alphabet of nouns that can ultimately affect wellbeing, health, and even exercise.
During this “Valentines Week”, the first showings of the best seller book(s) made movie, Shades of Grey, was the highest money-making movie of all time for a President’s Day debut. It netted almost 82 million dollars in 3 days. That begs the question; don’t you think a few chronic pain patients may have a vested interest in sexual activity?
This is the first of a two-part blog, the second of which will focus on pain medications by pharmacological class, how they affect various aspects of sexual function, and what you can do to mitigate that. But for today, I am thrilled to have our guest blogger Barby Ingle, a person who has endured chronic pain herself; she is an author, chronic pain educator, patient advocate, and President of the Power of Pain Foundation.
Please welcome these words in various shades of “gray” from Barby Ingle…
One of the most difficult things about chronic pain is the profound impact that it can have on your sex life. If you think you are the only chronic pain sufferer with intimacy issues, think again. Emotional, physical, and medication factors all play a role in chronic pain patients dealing with sexual dysfunction issues. Sexual dysfunction can come from habit as well. When people don’t feel well on a constant basis they can get into the habit of not having physical contact with their partner. After a while the person in pain can forget to even think about the needs of their partner and become consumed with their pain experience. As humans we need physical touch and companionship. If you are falling into a pattern of a sexless relationship make a conscious effort to change the situation.
Valentine’s should serve as a friendly reminder for how important loving physical touch is to a person in pain. Keep in mind the things done out of kindness are a way of showing affection. For those in pain these things can’t be overlooked or taken for granted. Let them know you are still interested and willing to have intimacy. This can put your partner at ease. It is easy to jump to conclusions as to why your partner has stopped touching you. The reason is usually not that they lost interest in sex or in you. It is usually a lack of communication and can be fixed. Maybe your partner is afraid of causing you physical pain. As a pain patient myself, I don’t feel sexy every minute of every day. I learned there are ways to have a sexual relationship that is romantic even through the pain I live with on a daily basis.
Many times rekindling the romance is successful with proper communication not just with your partner but also with your health providers. Talking to your provider about your sexual activities (or lack thereof) can be nerve wracking and a bit embarrassing for many. Unless we speak up about what we are experiencing we will not find a work-around for whatever is causing the dysfunction. More than likely it is something that can be overcome if we just communicate. Even if you are embarrassed or shy simply describe the changes you are having; lack of desire, difficulty with performance. Just like when a patient brings in a list of medications they are currently taking and the benefits or side effects they are experiencing, it is important to have this sexual function discussion.
Romance and intimacy is not all-or-nothing. Do not be shy about investing into your sexual relationship. These days it is very easy to be creative. There are many levels and creative ways to have a sexual experience. If you have vaginal pain, opt for other types of sex that is still satisfying to your partner and keeps you close. If you have erectile dysfunction, consider alternatives that can otherwise heighten arousal for each participant. There doesn’t have to be penetration every time or even most times, but it should be satisfying every time. Commit to the time it takes to have the sexual experience and mentally filter out the negative pain for a few minutes. Don’t reject your partner and positive experiences by insisting that any connection doesn’t count unless it is traditional sex.
Barby Ingle is the author of Real Love and Good Sex for Pain Patients and Their Partner http://barbyingle.com/books. She is a chronic pain educator, patient advocate, and President of the Power of Pain Foundation. Barby is also a motivational speaker and best-selling author on several pain topics. She has been a pain patient since developing endometriosis in 1997, and reflex sympathetic dystrophy in 2002.
This was a very hard article to read. I am a cronic pain patient who has major nerve injury from a hysterectomy. This has caused me to have terrible pelvic pain and left leg crps. I have been like this for 5 years and my husband and I have not been intimate at all. We have a great relationship and cuddle on the sofa and stuff but nothing resembling sex. I understand the difference between intimacy which we have and sex. Add on the drugs and needless to say sex is way out of my mind. My husband has been great but I worry this will not last forever. I so want to work on this but I am scared to death and don’t no how to begin. When I listened to the last few comments from single people I just want them to know you can feel lonely , scared and unsure even in a great marriage.
Interestingly, I was the editor of Dr. Steve Colameco’s article on “Opioid-Induced Sexual Dysfunction,” linked by Dr. Murphy above. That was before I entered myself as a patient into the dark world of chronic pain. I’ve since learned that, while all of the medical guidance and psychological advice regarding sexual issues in pain patients makes sense in theory, the reality is quite different. Insurance carriers have no interest in paying for tests and treatments regarding sexual performance in pain patients. Many (most?) pain meds — opioids and others — have potential for causing sexual dysfunction of some sort. Most healthcare providers have neither the time nor the expertize when it comes to managing sexual concerns of patients. When the questions is: “Which is most important to you, that we manage your pain or improve your sexual performance?” I believe that patients would chose a focus on getting pain under control as a first priority, which is not to say that physical intimacy with a partner is not at all important.
Great article. I have also read Barby Ingle’s book “Real Love and Good Sex for Pain Patients and Their Partners”. Barby gave some wonderful ideas and goals to work on creating a Romantic and Intimacy filled relationship. I enjoyed reading this post and being reminded of working on my relationships, especially when we are living with chronic pain. I have learned many creative and helpful ideas and tools to communicate with my husband. Thank you for having Barby Ingle as your guest!
Chronic pain changed my life ,it changed who I am , what I wanted out of life , chronic pain has changed every last aspect of my life. Chronic pain has formed a barrier between me and other people to where I feel like I don’t fit in with anyone or with any group of people. How can I expect to have a relationship with a woman when chronic pain has set all these barriers for me.
Because of chronic pain I had to stop all intake of alcohol and I always intertwined having drinks with having a good time with my partner, but that part of my life is over. It seems I’ve fallen in to this way of living because that’s what chronic pain does to a person. Its not my intentions to be negative in any way, shape or form but it is what it is. I’m on disability and on a limited budget , I don’t see anything changing soon unless I meet someone that can deal with being broke all the time , can happiness be found for a person like me. People may say well that guy has a negative attitude , but because my life is limited as to what I can do and when I can do it I don’t see anything changing. Dot get me wrong I would love to meet a attractive woman but I’m closing in on 59 years old this June .Because of chronic pain I never got married and never had children .I keep in good shape and take care of my body and don’t smoke or do drugs. I often wonder what do be people think of me when they see me, what do they think when I speak . Time passes us by so very fast, all I can do is take care and move forward. Maybe one day I will meet someone but I’m pretty set in my ways but could change if the correct woman came along.
Mark,
Thank you for your comments. I just turned 59 in January. I’ve been single 1999. I’d been married 10 years. Since separating I’ve had all of 2 dates! Anyone that knows me has to be shocked at the drastic change in my personal life.
I have always had a man at my side. I’m embarrased to say I married 4 times. I only blame myself, my choices in partners was poor to say the least.
Strangely, just last week I asked my 12 yr old grandgirl for a hug saying ” I miss human contact”, it had just hit me at that moment. I womdered how many single, chronic pain patients felt the same loneliness.
Even more sad, the last half of my marriage was sexless; that’s correct, I’ve hsd NO SEX FOR 15 YRS!! Aren’t I pathetic?
Now I am 80 lbs overweight due to steroid maintenance and other drugs. I can’t move enough to BURN calories. I’ve starved to lose 16 lbs in 2 months. If I somehow managed to meet a man I was interested in I wouldn’t dare kiss. I’ve lost nearly all my teeth. Again, prescription drugs and no dental Insurance. I wouldn’t want to kiss me.
I hate mirrors and try to avoid them.
At least now I knowim not alone.
Vicki,
Your not alone , I knew I wasn’t the only one that hasn’t had human contact in ages, now days we need medical clearance on the other person to make sure their healthy and don’t have STD’s. Chronic pain has taken everything away from me but I have to admit I do have a lot of positive things going on in my life.
I have to keep myself busy at all times to keep the pain off my mind so I fast walk 3 miles 5 days a week ,it keeps my weight down, I play Bass guitar and just bought a new Fender Jazz Bass and I’ve wanted one all my life. This past Christmas I thought we only live once , I’m buying it, I don’t care if I have to pay back MasterCard for the rest of my life , its easy to play, looks great and sounds fantastic . I moved to a new apartment complex for people 55 and over and no one uses the gym but me and one other guy.
This is the nicest apartment I’ve ever had and its new, all my appliances are new and its pretty nice place to live, I have my own garage , wow. I was living in a grungy HUD apartment complex and everyone was disabled ,that was really depressing so I got out of there 2 years ago. I have a lot of things other chronic pain sufferers don’t have like a good family that cares , they wont let me starve to death. So life is what you make it keep thinking positive. As far as meeting someone I really don’t care anymore one way or another, my last girlfriend 15 years go said I hope you grow old and lonesome , well she got her wish , I’m better off alone than with her she was stealing my medication. And that’s how my life goes but its not half bad , I just need to keep moving forward.
Maybe one day I will meet a pretty lady , maybe not, you know how it is closing in on the big ole Six – O. , thing is we had the best music in our generation , now days I’m not sure what it is I hear on the radio, it all sounds the same ,rhyming poetry or something like that , I’m not saying the word Rap , well it slipped out , sorry Dr. Fudin .
Thank you for shining a light on the subject of sexual dysfunction and chronic pain. Among the various “issues” associated with chronic opioid therapy, this one often remains in the shadows. It should not.
Just last week, after I performed an epidural on a middle-aged man with low back pain he sheepishly asked if he could speak with me about a personal problem. As soon as I realized it was about sexual dysfunction, I took him to a private place and had a brief, but very important conversation with him. Once he got the facts, he seemed relieved and felt empowered to do something about it. It may have been the most important post-procedure conversation I had that day.
Here is another article highlighting the relationship between back pain, opioids, and erectile dysfunction.
http://www.webmd.com/back-pain/news/20130515/erectile-dysfunction-tied-to-long-term-narcotic-use-in-men
And here is an informative article on opioid-induced sexual dysfunction by Stephen Colameco, MD, MEd
http://www.practicalpainmanagement.com/treatments/pharmacological/opioids/opioid-induced-sexual-dysfunction
As usual, paindr.com has provided much needed information on a topic others have too often ignored. Bravo!
Dr. Murphy, Thank you for sharing this story and these great links!
Great post, Barby/Jeff!