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From Pleasure to Pain: The Challenges of Sex and Illness We Need to Talk About

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If you or someone you know has endometriosis, adenomyosis or pelvic floor dysfunction, you may know at least some of the symptoms associated with these conditions: pelvic, abdominal, back, and leg pain, fatigue, bleeding issues, and infertility. Perhaps you know of the other, less talked about symptoms if you have yourself experienced them or read of them online. 

Every woman is different, yet many of us who have these conditions struggle in silence, especially when it comes to the topic of sex. Yes, I went there! I said the “S” word! If you were to ask couples about some of the best aspects of marriage, I would bet you “sex” would be near the top of the list. After all, isn’t it a pleasurable act to commit with the one you love? Or, it’s supposed to be. For many women, this is nothing more than a distant memory, a lost part of who they used to be. 

Disease and muscle tension in the pelvis resulting from it can do horrible things to a libido and steal any pleasure that is supposed to be experienced. For many of us, that pleasure turns into pain, which leads to problems as you can imagine! At first, we may feel embarrassed to discuss this with our spouses or doctors. We may commit to a “grin and bear it” philosophy, but this can lead to emotional turmoil and is unfair to both spouses because communication and honesty should be a part of intimacy. Some may try to talk about it only to receive less-than-desirable responses or a lack of empathy. 

Many of us have tried different solutions, including pelvic physical therapy. This is not only invasive, but can be painful as well. We may hold on to the hope that it will allow us to enjoy, or at least participate in, sex again. For some of us, our time, money and hope is wasted when nothing changes after months and months of therapy. After a while, we may decide that the pain (that can be like active labor and last several days after sex) is not worth it. So, we give up trying and our spouses who don’t wish to hurt us are left to live with wives they can only hold if she is not in too much pain to even be touched. Life goes on and there is frustration and worry about the future of the relationship and the marriage. 

Hope and relief is sometimes found in expert excision, or removal, of disease followed by pelvic physical therapy, but this is another challenge for us who are hurting. Many doctors and insurance companies don’t seem to recognize the need for skilled surgical treatment and therapy. They don’t seem to care if you cannot sit, use the bathroom or have sex without severe pain. But, that’s for another article.

As frustrating as this can be for both spouses, it’s crucial to remember that it’s not your fault and you are doing the best you can. Communication with your doctors and other health care providers is a must! I know of several women who have had success with different treatments. Ask for options and do your homework. Doctors need to consider the devastating effects of chronic pain and the importance of sexual intercourse in a relationship. They need to be willing to listen and discuss options with their patients, realizing that pain with sex is not normal nor should it be ignored. It’s a sign of something wrong.

Likewise, spouses need to be patient and compassionate. They need to give love and affection and reassure their wives that they are cherished. It would be great if they can attend the doctor visits too for support. After all, this is affecting us as couples and being a supportive spouse during difficult times can be a challenge, but it can also make your relationship stronger and resilient during hard times. 

Women, if you are struggling with this issue and do not have that support, please seek it in other women who can understand. There are support groups online that have many women going through the same things and even if it doesn’t solve the problem, it can be a comfort to know you are not alone and there are people who care. I’m one of them.

Originally published: September 18, 2016
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