[dazzParticipant]

Hi,
I hope I’m not speaking out of tone with this potentially embarrassing question but I’ve had enough and would like to know if there is anyone else like me out there. I have had 2 stem trans and just coming out of remission for the 2nd but ever since I started chemo 6yr’s ago I’ve not been able to have sex. My wife and I were very sexually active prior and I’m only 57 and we both miss it. I’ve tried the meds and mort other ideas…has anyone else had the same experience and is there hope or are we pretty much bashing our head. I appreciate it’s a sensitive subject but if we can’t speak amongst ourselves with the problems we’ve already endured and shared then who can we. Sorry for any offence or embarrassment.

[macklebaeParticipant]

It was a welcome relief in some respects to read your post and I don’t think it is out of place. Like you, early 50’s, lost my sex drive after being diagnosed with MM Feb 23 (complicated by associated kidney failure) then Stem Cell Transplant in Oct. Unfortunately, I don’t have any solutions out there but hopefully my posting might encourage others who might have the magic answer. I can’t work out if it is the MM, the kidney failure, the amount of medication or just psychological. Probably all of the above!

[dazzParticipant]

I would like to hear from anyone who has had chemo/stem trans and am curious if they had an active sex life before have they got it back. I don’t want to think that there’s no hope for me because of this unfortunate circumstance although I do understand how lucky I am…in the loosest term 🙂. Because it’s not just me, it also affects my wife.
I do think what you have said..macklebae is probably correct though unfortunately. And thankyou for replying!

[graham-cParticipant]

It would be worthwhile reviewing your eGFR (kidney function) results. If you don’t have a historical record, then your current figure may represent a clue as to the underlying cause.

I am told that my figures don’t warrant any treatment by haematology (fair enough – their call) but my eGFR results fall within NICE protocol for referral to Nephrology and this could be the cause of your symptoms.

I claim no medical knowledge in this matter.

[davidainsdaleParticipant]

Hi Dazz

You’ve done very well having two stem cell transplants, but sorry to hear that you are coming out of remission. It can feel like a slog at times, dealing with the side effects, particularly the steroids. I know of others who are doing well on subsequent lines of treatment after two SCTs.

My spine collapsed when I was first diagnosed and am now four inches shorter. Pretty much wheelchair-bound for twelve months so you can imagine that this presented various challenges. I know of others in our local support group who have suffered significant bone damage, so have had to adjust accordingly.

In response to your specific query, I would think that your Clinical Nurse Specialist would be the best source of advice if you’ve not already done so. He/she will be familiar with the difficulties you raise and may be able to sign-post you to other specialist services.

The impact of a myeloma diagnosis on family/ carers/ partners is often overlooked and they have an important role to play, and may need appropriate help and support. I have found Macmillan and our local myeloma support group very helpful … you’re not alone in having to cope.

They say that myeloma is a marathon , not a sprint, and I think that having a positive mental attitude is a good starting point.

Hope this helps.
David

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