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Old Sun Mar 12, 2017, 05:15 AM
Lauz4841 Lauz4841 is offline
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Location: UK
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Physical relationship with MDS

Hi, my other half was diagnosed with MDS last year. He is 49 years old and we have been together for 2.5 years.
He has low risk MDS but is not responding to treatment. He has had the drip treatment and is now currently undergoing injections directly in the bone marrow.
As a couple we like to engage in the physical aspect (without going into too much detail) of a relationship but he is struggling to which is very difficult for him and he finds it's incredibly upsetting. What happens when we do try is he becomes very light-headed and is overcome with a severe headache and nausea which can last a couple of days. So trying to work around that, he doesn't reach an orgasm but even stopping before that happens is proving to make him unwell now because of the exertion.
Has anyone experienced the same issues? Is there a way around this or anything we can try to make things a bit easier?
xx
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Old Sun Mar 12, 2017, 04:00 PM
DanL DanL is offline
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Sorry to hear about this problem. I am sure that it would be quite frustrating for both of you. To me, assuming all other aspects of his health are good, it sounds like he doesn't do well with a lower hemoglobin levels. I did not ever really experience this as I was able to be alright with some physical activity down to an 8, but have heard of others having trouble as high as 10. Is he blood transfusion dependent? Is he taking other drugs that may make this worse?

Also, my team of doctors was pretty responsive to these kinds of questions, so you might want to ask either with him in the room, or separate if that is more comfortable to your other half.
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MDS RCMD w/grade 2-3 fibrosis. Allo-MUD Feb 26, 2014. Relapsed August 2014. Free and clear of MDS since November 2014 after treatment with Vidaza and Rituxan. No longer experiencing nor treating CGVHD. Working on fixing long-term side effects of AVN in hips and cataracts in eyes. Life is good!
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Old Sun Mar 12, 2017, 04:08 PM
Neil Cuadra Neil Cuadra is offline
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Lauz4841,

The Aplastic Anemia & MDS International Foundation (AAMDSIF) offers advice on sexuality and intimacy. These types of questions have been addressed at sessions at some of their Patient Conferences. Here are the slides from one such session.

As DanL says, when men are anemic, as they often are with MDS, the blood supply required for physical activity, especially this type, is diminished. But experts offer tips that can help. Some are obvious, but there are others you might not think of, such as avoiding sex while digesting, because both are powered by the blood supply.

If you contact the AAMDSIF, I bet they could identify other sources of advice for you.
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