Ask the Doctors: Chronic Pain & Sex, Part 1

I am 59 year old woman with multiple autoimmune disorders. Even with narcotic pain relief, I am always in serious pain. I have very severe fibromyalgia, so my skin, that wonderful sensual organ, is painful to even light touch. Some areas cannot be touched at all. One of the disorders, Sjögren’s Disease, has triggered a very aggressive form of osteoarthritis, which has attacked all my joints except for those in my ankles. This limits positions. The primary issue is with my knees, left hip, and inability to support myself with my arms.

I have been ill for about 7 years. I have embraced my illness as an opportunity to learn, to gain greater compassion and empathy, and to help, by word of mouth, other women in my situation. Do you have any suggestions for literature on sex for folks in chronic pain, positions, anything? I’m working on a book about my experience and what it has taught me, spiritually, physically, emotionally about myself and becoming a better human being. I would like to include its impact on my sexuality, but need to find some solutions for myself first.  ¦

I’ve thrown quite a bit at you and look forward to your response. I appreciate the time it may take to answer such a long email. I am very much in need of your experience and knowledge.

Sincerely, Sharon

[NOTE TO GV MAGAZINE READERS: My long answer to Sharon has been broken into four segments — this is just the first one. –CQ]

Sharon, first I’m going to address your question about reading material and discuss your issues more generally; then I’ll go to your specific questions. It may take me a bit of time to do this, so I hope you’ll bear with me. BTW, I have a partner with a chronic pain condition, so I know how emotionally, as well as physically, challenging this can be. Hopefully I can point you in some helpful directions.

Firstly, books: The Ultimate Guide to Sex & Disability by Miriam Kaufman, MD, Cory Silverberg, and Fran Odette is the most up-to-date and thorough book on the topic. Cory, my old friend who writes the sexuality updates and commentary for About.com, is also a very sex toy-savvy guy; he’s one of the founders of Good Vibrations’ sister store Come As You Are, in Toronto, and I very much like his take on all things sexual.

The rest of the books (listed below) are not ones I’ve read lately (or in many cases I’m not familiar with them at all), so I have asked him for his thoughts on them, which I’ve included. Some may have little to do with chronic pain disability; at least one is for back pain, and I’m including it because I think its overall discussion (on positions, on dealing with pain) might be of use — but really I am throwing alphabet soup at you and am doing so specifically because you say you’re going to write about these issues. (I have also not even included cultural studies-type books, of which there are a few out there, and you might well appreciate their perspectives.)

I am also going to suggest a book that doesn’t have much of anything to do with chronic pain or illness per se, but which might help with the communication and emotional elements of your situation: Healing Sex: A Mind/Body Approach to Healing Sexual Trauma by Staci Haines is a wonderful resource by a somatic therapist, ex-Good Vibrations manager, and activist against child sexual abuse. She’s a treasure, with great insights coupled with practical exercises and suggestions.

Good Vibrations doesn’t carry the below books, but you can track them down via used booksites on the Internet and other such sources. On to Cory’s insights:

“There’s so little out there [on sex and disability] that in some ways, reading it all isn’t too much, and everyone is likely to get at least a thing or two from each book. It doesn’t take long to run out of stuff to read. The other general point I would make is that none of these books is without problems. Most are 100% heterocentric, many have a medical model of disability which, while talking about disabled people as deserving of sexual rights and expression, is still about disability as being other and about deficits. In other words, with the exception of the Harlan Hahn book (and ours), these books aren’t very political. But we both know that people can get good stuff even from narrow minded books.

“That said, where I would recommend starting depends on the point of the reading. So if she’s looking for concrete ideas on how she can enjoy her sexuality then I’d probably recommend:

Enabling Romance: A Guide to Love, Sex, and Relationships for the Disabled (And the People Who Care About Them) by Ken Kroll and Erica Levy Klein

Sex and Back Pain: Advice on Restoring Comfortable Sex Lost to Back Pain by Lauren Andrew Hebert

The Illustrated Guide to Better Sex for People With Chronic Pain by Robert W. Rothrock, G. D’Amore, and Jonathon Belt

Love, Sex and Disability: Maintaining Interest and Intimacy by Harlan Hahn, Ph.D.

Sexuality And Fertility Issues in Ill Health And Disability: From Early Adolescence to Adulthood by Rachel Balen and Marilyn Crawshaw

Sex, Love, and the Physically Handicapped by Evelyn West Ayrault

Secret Suffering: How Women’s Sexual and Pelvic Pain Affects Their Relationships (Sex, Love, and Psychology) by Susan Bilheimer and Robert J. Echenberg M.D.

(and ours [The Ultimate Guide to Sex & Disability] would fit into this category also).

“If they’re more interested in understanding how professionals think about sex and disability and a clinical approach to the topic, then these texts are the ones to look at:

Choices: A Guide to Sex Counseling With Physically Disabled Adults by Maureen E. Neistadt

Sexual Function in People with Disability and Chronic Illness: A Health Professional’s Guide by Marca L. Sipski and Craig J. Alexander

Sex and Disability – Fall 1980 (Journal devoted to study of sex in physical & mental illness, Vol. 3 – No. 3) by Ami Sha’ked and Susan M. Daniels

“Hope that helps some. You should encourage her to check out disabled bloggers as well. There’s some great writing out there.  I’d start with a site like http://disabledfeminists.com/.”

 

Thanks, Cory!

OK, back to the physical difficulties for a minute. You don’t mention vaginal dryness in conjunction  with Sjögren’s Syndrome, but between the possible effects of that condition and menopause, you should certainly check out lubricants, if you haven’t already gotten slippery. I would strongly recommend avoiding lubricants with glycerine, in your case. If you have any food sensitivities that you know of, also avoid lubes (included flavored “lickables”) that might contain flavoring agents or essential oils of foodstuffs that don’t agree with you.

Speaking of food sensitivities, I am guessing you know about the info here: http://www.myalgia.com/sjogrens.htm

and here, re: fibromyalgia and food: http://www.fibromyalgia-symptoms.org/food_allergies.html

and this one, which just showed up this week: http://www.huffingtonpost.com/dr-mark-hyman/how-to-stop-attacking-you_b_657395.html

I’m aware personally about the ways food sensitivities and other environmental reactions and allergies can affect the body; there are enough people who are concerned about the links between these issues and autoimmune disorders that it’s probably wise to keep an open mind about such things. If you do not have a doctor who thinks in these terms and encourages consciousness about the links between what you ingest and how you feel, please start a food diary — even without escalation into fibromyalgia, celiac disease, or other problems, sexual function is on the list of possible symptoms of these sensitivities, as is chronic pain.

Besides that, fatigue from any source can affect sexual desire, arousal, and functioning, and chronic pain will usually do the same. So if there is a possible source of relief looking at your situation holistically (diet, acupuncture, Chinese medicine, etc.), it might be a good idea to go down those paths of enquiry too, if you haven’t yet. Allopaths –even wonderful and caring docs– often know nothing at all about this question of food and other sensitivities as contributors (or even possible causes) of autoimmune disorders.

Now then, a couple of general things to say about chronic pain and sex, and I will then spiral down into your questions and get more specific. I found this on fibro and sex, for starters: http://www.webmd.com/fibromyalgia/guide/fibromyalgia-and-sex

Try to identify when you are more likely to experience fibromyalgia and arthritic pain flare-ups. Is there a time of day that is easier than the harder times? Are you  a little better after you’ve had a better rest than when your sleep has been really impaired? Is there a particular window of ease after your meds kick in? Anything you can note that tends to be true for your pain ups and downs is worthy of note, especially when you begin addressing this with your husband [more to come on this part of Sharon’s question].

Additionally, though I haven’t worked with anyone with fibromyalgia, I’ve come across at least one reference that suggests that for some, light touch is painful, but deeper touch –and even spanking– isn’t. Have you explored the range of sensation available to you? I’m not suggesting you get into SM (unless you’ve been looking for an excuse to explore it), but if you can expand what kinds of sensations you experience during erotic play, you might find there is more on your menu than you thought. You might need to really encourage your gentle husband to engage in this exploration with you, given how fearful he is of hurting you. It might, however, be worth it.

Finally (for now), any erotic touch (even that which does not result in orgasm or from BDSM play) is likely to increase your endorphin production and hence alleviate your pain, at least a little. I gather from your letter that you and your husband are having intercourse rarely, but how about other kinds of erotic experience? So many couples avoid intimate, pleasurable touch altogether when intercourse becomes painful (or problematic in other ways, as when a husband has erectile problems) that it can leave a dearth of sensuality in their lives that’s hard to turn around. We’ll address this further in one of the next sections of my reply.

Till then, I want to thank you again for writing, and for making this journey mindfully — especially for choosing to write about it. That process is likely to be at least somewhat healing to you — it certainly will be useful to other people.


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Dr. Carol Queen

Carol Queen has a PhD in sexology; she calls herself a "cultural sexologist" because her earlier academic degree is in sociology: while she addresses individual issues and couple's sexual concerns, her overarching interest is in cultural issues (gender, shame, access to education, etc.). Queen has worked at Good Vibrations, the woman-founded sexuality company based in San Francisco that turned 35 years old in 2012, since 1990. Her current position is Staff Sexologist and Good Vibrations Historian; her roles include representing the company to the press and the public; overseeing educational programming for staff and others; and scripting/hosting a line of sex education videos, the Pleasure-Ed series, for GV’s sister company Good Releasing. She also curates the company's Antique Vibrator Museum. She is also the founding director of the Center for Sex & Culture, a non-profit sex ed and arts center San Francisco, and is a frequent lecturer at colleges, universities, and community-based organizations. Her dozen books include a Lambda Literary Award winner, PoMoSexuals, and Real Live Nude Girl: Chronicles of Sex-Positive Culture, which are used as texts in some college classes. She blogs at the Good Vibes Magazine and at SFGate's City Brights bloggers page and contributes to the Boston Dig. For more about her at carolqueen.com.

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