A helping hand in the boudoir: just wondering if... - MPN Voice

MPN Voice

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A helping hand in the boudoir

Jasbak22 profile image
18 Replies

just wondering if any of you gents has any experience of taking Viagra or similar. I feel my ability to maintain things in the bedroom had deteriorated over the last few years and wonder if there’s anything I can do to help.

Much appreciate any help in this delicate matter.

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Jasbak22 profile image
Jasbak22
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18 Replies
hunter5582 profile image
hunter5582

This is a common problem for men with MPNs. Blood flow is vital to the process. The PDE5 inhibitors like Viagra or Cialis can be very helpful. The daily 5mg version of Cialis (tadalafil) is effective and allows for a greater degree of spontaneity. It is now much cheaper since it is available as a generic drug.

Jasbak22 profile image
Jasbak22 in reply tohunter5582

thank you Hunter much appreciated.

ciye profile image
ciye in reply tohunter5582

Does the same apply to women, I can't find anything that says mpns effect labido

conno61 profile image
conno61 in reply tociye

Taking peg can lower libido.

hunter5582 profile image
hunter5582 in reply tociye

The blood flow issue is more for men; however, there can be impact for women too. See the longer answer on this issue below.

Jamesxyz profile image
Jamesxyz in reply tohunter5582

I take viagra 100 when needed. It seems to do the job.

It's preety fast about 15 minutes on an empty stomach.

ainslie profile image
ainslie in reply tohunter5582

Hunter

I havnt seen or heard anything in the literature or verbally that it’s a common issue with MPN. Do you have any info on that.

Or is it a matter of co-incidence as opposed to cause, most with MPN are typically in the over 60’s group. Erectile issues are very common in that age group for many reasons including low testosterone and vein issues and quite a few others.

Jasbak22 profile image
Jasbak22 in reply toainslie

hi I’m actually 52 and was diagnosed about 8 years ago. But I totally get it. I sometimes hear people saying they have fatigue then you find out they’re 78, I’d be surprised if any one of that age doesn’t feel fatigue. So totally get your point. Thanks.

hunter5582 profile image
hunter5582 in reply toainslie

There is evidence in the literature and a reason that sexual function is included on the symptom assessment for MPNs. Sexual function is complex and includes both physiological and psychological components. Blood flow/microvascular function is part of the issue for males regarding erectile function. The fatigue that can accompany MPNs can also affect sexual function. Added to that is the potential adverse effects from some of the medications used to treat MPNs. The psychological factors are equally important. Stress, anxiety, depression can accompany MPNs and adversely impact sexual function. There is no one factor, rather it is a cluster of MPN related issues that can have a negative impact on a vital area of the quality of life of people with MPNs.

healio.com/news/hematology-...

oncologynurseadvisor.com/ne....

curetoday.com/view/new-stud...

pubmed.ncbi.nlm.nih.gov/270...

semanticscholar.org/paper/T...

ainslie profile image
ainslie in reply tohunter5582

Thanks for posting those links, on skimming them it seems the first 4 are referring to the same data/paper. I have to say I am a bit sceptical, it says that the highest difference between MPN patients and control were Chinese speakers and with Swedish speakers there was no difference between MPN patients and control, that sounds a bit suspicious.

A quick google search on sexual issues in older non MPN men and Pub Med has a study of men 50-75 and allegedly at age 50 sixty seven percent had issues and at age 75 eighty nine percent had issues, that’s worse percentages than the MPN patients in the links you posted if I recall correctly.

I’ve had PV for 14 years and even at diagnosis when my counts were uncontolled with Hgb at 197 and Hct 56 I have not had any issues. I do however try to optimise my health in other ways including hormones.

I think maybe it’s not clear what the cause is in MPN or non MPN patients.

I post this not to be sceptical but to hopefully to convey that one doesn’t have to have sexual issues with a MPN especially those who are fit and healthy otherwise.

hunter5582 profile image
hunter5582 in reply toainslie

I agree. Just because something can happen with MPNs does not mean that it will happen. To apply a bit of common sense to the issue rather than the data, it makes sense that people with MPNs would be at higher risk. That does not mean that it will happen, just that it is all the more important to take steps to ensure that we do what we can to prevent it. There are plenty of reasons to stay fit and healthy. Preventing sexual dysfunctions is one of those reasons.

Skidsteer565 profile image
Skidsteer565

I started using sildenafil before my ET diagnosis. I have PHN from a severe shingles outbreak along the T2-T3 dermatome which occurred in 2015. I was left with nerve damage and intractable pain. The pain has lessened over time but is still there. In the early years of this affliction caressing and cuddling were for me to be avoided which cause much angst in the intimacy department. Sildenafil helps me maintain even when painfully distracted. I can use 50mg to get desired results.

Gents the use of an ED pharmaceutical is not only about you it is very much about your significant other. So don’t let machoism or egoism get in the way of being a considerate partner.

Plavers profile image
Plavers

Totally agree with Hunter Cialis or Tadalafil daily dose doesn’t feel like such a pressure to perform in 30 minutes or whatever, but gives you confidence. (Sorry for the commercial!)

Solyesh profile image
Solyesh

Had long discussions with my MPN specialist about this. He stated that this is a fairly common but less talked about potential issue with MPNs. He also stated that erectile dysfunction and a decrease in libido have been described in some men who received IFN. His message was the good news is that the interferons work for many people but sometimes they do have side effects and this can be one of them. He also stated that the better news is that there are drugs (not that we want to have to take more drugs but...) that can help (as have been mentioned here)...

socrates_8 profile image
socrates_8

Hey Jason... :-)

Not sure if you might recall this or not... However, some time back now I wrote about how using raw Nitrate derived from Beetroot, had immensely aided my endurance levels(?)

That research I undertook, revealed one of Three (3) famous Noble Prize Winners for the discovery of Nitric Oxide (NO). One of those gentlemen is a Prof. Dr Lou Ignarro...

Ignarro has written extensively about the benefits, and also alludes to how that so-called "Little Blue Pill" came to be... You guessed it, NO...

Apparently, just by replacing the NO to that part of our bodies, may well have the same effect...

Just a thought buddy... Do let me know how you go...

BTW, prior to being run down on my bicycle, I used Raw Beetroot everyday to aid my endurance levels w/ great success... & I've never suffered in the other department either, in my view... 8-)

Best wishes

Steve

(Sydney)

Jasbak22 profile image
Jasbak22

cheers Steve I’ve got some in the fridge, but think I may have to up the quantity to see any effect, but literally food for thought 😉

socrates_8 profile image
socrates_8

Hey Jason...

Use RBJ everyday, whether you do your cycling or not... It must stay in the system to aid. After just two (2) days of non-replenishment it is mostly used or absorbed etc.

I will return to RBJ again once I've recommenced Riding, just recently recommenced my Spin bike. But still quite a bit sore afterwards...

Biggest issue right now is trying to acquire my next Bike etc... Cervelos' have basically doubled in price(?)

Liking the Soloist but money is in short supply these days... I can also have an Emonda SL7 2024 Ultegra Di2 w/ integrated carbon RSL bars & carbon wheels all for 5K...

Same specs on Solosit Cervelo lands at almost 10K...

BTW, I have between 500-700ml 1.5-2 hours before I go cycling... Hopefully, I will return to exercise every day again real soon...

Best wishes Jas

Steve

Jasbak22 profile image
Jasbak22

Yes do like the soloist. Im into my gravel at the mo with most of my rides being that type. I have a Crux which is essentially an Athious but with wider clearance for tyres, some people are specking this with road bike kit and having it as a do it all bike . Good luck with your bike search. I’m coming to Darwin in September but most likely won’t be down your way which is a shame but have limited time catch you later

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