Sexual intimacy with high risk MDS

[Carrie Duff]

Hello, my 30-year partner has just been diagnosed a few months ago with high risk MDS at 73 years old. Throughout our relationship we have enjoyed frequent and very satisfying sexual relations which have decreased and frequency but not in pleasure in the last year or so. Can members of this forum please tell me whether or not their treating Physicians have advised against sexual intimacy? We were surprised by what our treating physician told my husband. In addition, her counterpart, a male,
gave different advice. Before diagnosis my partner was extremely active and vigorous in many ways. Now extreme fatigue and pancytopenia have sapped his reserve. Still, we are interested in continuing intimate activity and wonder what other folks with MDS have experienced in terms of advice from Physicians and in their private practice. I am not finding much information about this subject online and look forward to hearing from fellow caregivers and MDS patients.

[Ashley Moncrief]

Hi Carrie,

Thank you so much for reaching out! It is important to remember that the goal of therapy for MDS is to prolong quantity of life, but that means little without quality. You have to continue to do the things you love, just in a smart way.

Did the physician who advised against it give a reason? Often the concern is the pancytopenia. Low white blood cells put one at risk for infection; this is especially true should any small breaks in the skin occur as could happen with sexual activity. When hemoglobin is low, the body has less oxygen carrying capacity. In practical terms, this means that the patient may tire more easily and become short of breath with activity that used to be well tolerated. If platelets are low, there is an increased risk of bleeding and bruising.

I can’t give medical advice, but I can say some things to consider are:
– Try to time activity with when counts are the highest to avoid any unnecessary risks. Ask your doctor if there is a threshold that needs to be met prior to activity such as a platelet count of greater than 50,000.
– Ask your doctor if the treatment being used for MDS is excreted in body fluid because the person without MDS does not need to be exposed.
– Do consider other forms of intimacy if sexual intimacy is not an option.

I do recommend a conversation with your doctor. He/she needs to understand that this is a priority and come up with a plan that makes sense.

I hope this helps.

Ashley

[Carrie Duff]

Thank you Ashley! Yes, all those points you mentioned must be kept in mind. Russ does have pancytopenia with characteristically low counts,is doing 7 day vidaza chemo and is red and platelet transfusion dependent at this point.
It is very disheartening for us, when he was always so vigorous prior to diagnosis.

We are looking to get more guidance as to very specific activities, with his male MD oncologist, Somewhat puzzling, we have gotten the extreme (to us) no sex recommendation from his female NP. At this point we are proceeding with caution and abstaining throughout the chemo, pending discussion with the MD at the start of Russ’s next chemo cycle. It has hurt us psychologically, however, to feel restricted and/or conflicted about what may be appropriate or “allowed”. Thanks for bravely responding to this post!

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