This is mainly a question for male members here. I hope its ok to ask this here and there is no taboo topics here. I just want to know how this disease affected your sexual health overall. I am 48 years old. Diagnosed with ET few months back. I think I just began to notice side effects of disease cause around 8 or 9 oclock in the evening I am totaly wrecked like the train hit me. Also my sexual health is not what it used to be. It could be my overall anxiety about everything mixed with side effects of disease. My erection is not consistent etc. Any tips or experiences around this topic? Can something natural help cause I dont really want to go blue pill way so soon. Thx for reading
Written by
Myers75
To view profiles and participate in discussions please or .
This is not a taboo subject. In fact, it is a common problem for men with MPNs. Some studies put the figure at more then two-thirds of patients with MPNs. healio.com/news/hematology-...
Unfortunately, this is a topic that is frequently not discussed. Patients are not always asked about sexual dysfunction as a routine part of assessment. That is very unfortunate as the symptom is so common with MPNs. Erectile Dysfunction is linked to depression and increased risk of suicide. It most certainly is an issue that needs to be addressed when present.
You correctly identify that anxiety can be part of the problem with ED. This is in part psychological, but is also biochemical. Anxiety releases chemicals in the body that interfere with sexual response.
The good news is that there are interventions that can help.
Starting with effective management of the anxiety, suggest seeking professional help for this. There are effective treatments (e.g., CBT) that do not involve medications. There are medications that can help if needed, but note that some of them can cause ED (e.g., SSRIs). There are medications without this adverse effect if needed.
It is very important to discuss the issue with a MPN Specialist to include as part of your MPN treatment goals. The MPN Specialist may be able to help or may refer to a Urologist for consultation. Treatment options for ED range from "natural" interventions (e.g., supplements) to various medications to the newer Wave therapies for ED. There can be very effective interventions for ED other than the blue pill. One worth mention is daily form of 5mg tadalafil (AKA Cialis). This medication also has a clinical indication for Benign Prostate Hyperplasia. It is both effective and has minimal risk of side effects. Suggest reviewing all of your options with appropriate members of your care team.
Thank you for bringing up a sensitive issue that needs to be discussed. Sexual dysfunction can be devastating to quality of life. It is very important to address it when present.
Thanks hunter. Good to know I am not alone on this. The problem also is lack of libido for me. Will probably talk to my doc cause that 5mg Cialis treatmen looks promising enough.
I started to become aware of issues a couple of years ago right before diagnosis - mostly extreme fatigue and almost complete lack of libido (just no desire at all in any form). Once I was diagnosed and went on HU it only became worse (Peg was about the same). I actually broached the subject with my MPN specialist and he said it was actually fairly common in male MPN patients. He asked my regular doctor to do a complete prostate exam and blood work (to make sure that was not the issue) and then they worked together to recommend the daily Cialis treatment. It definitely has made a difference - while not feeling like I am 20, it is much improved.
Definitely bring it up with your doctor. I was loathe to start an ED treatment so young but realized that the additional anxiety it was causing was not worth it and counterproductive.
I am a 66 year old male - for me what works it "Take the Blue Pill" and take the Hydroxy after. I used to use Cialis and that worked but since awhile before diagnosis I find the Blue pill works better for libido. Best way to fight general fatigue is to stay active - for me that's hiking a minimum of 6 miles a day. Best of luck!
Great topic to bring up. I can't remember having any issues with ED but as I've gotten older my sex drive has not plummeted, but has moderated from where it was in my 20's/30's... and honestly I've taken it as a good thing in how it has balanced my character. My meds are only daily aspirin and NAC (N-acetyl cysteine, OTC med) to help with joint aches, in case that's of interest.
My personal experience was that stress and anxiety were a massive amplifier for my symptoms. When I was first diagnosed my job responsibilities were very high stress. 2-3 days a week I would have that fatigue in the afternoons where it felt like someone just pulled the batteries out and the only thing I wanted was to lay down and sleep. I dumped that job and decided to retire, and fatigue is very rare these days. I'm about 3 years in since my MPN diagnosis, and the time also helped me accept it and now I really don't think about it much, which let me feel normal again.
I support the above recommendations - talk to the docs, weigh the options. But don't be hard on yourself over when things happen or why (e.g., too young for pills etc.). You can always try an ED med, see how that does, if you're feeling good then stop the med for a bit and see if it was just in your head or if it's worth continuing the pills. The only stigma is in your head. Do what makes sense to you and don't look back.
I’m a woman and MPN and sexual function is often the case with us too. A big driver of disfuction is fatigue, whether MPN or not. Since taking Acetyl L-Carnitine 2x a day, first 1g am and 1g 3pm, then just 500g am and afternoon. CoQ10 100-200mg daily helps many of us with fatigue. Natural sources please. No chemicals. These can make a huge difference! 🙂
Might check with your family doc for a testosterone level, I think Low T can cause a loss of or a decrease in libido. Just one of many causes I think. Best to you
I noticed the same. Did all sorts of other tests, T normal etc. Use 5mg Cialis or the others to sort out. Still the question remains why - does anyone know why PVB causes this?
I do not know that there is an exact answer for the question about PV and ED. It seems likely that is a cluster of issues. Microvascular blood flow, hypertension, stress/anxiety, inflammatory cytokines, and more can all play a role in ED. curetoday.com/view/new-stud...
The most important thing is to be willing to talk about it and treat it. ED lowers quality of life, causes depression and increases risk of suicide. Sexual dysfunction can affect men and women with MPNs. It s something that can be addressed if people are willing to seek help.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
ET JAK2 Positive 
ET young adult
25 with ET
Clinical Trial Exceed ET
ET sufferer. 
