Powered By
Continue with Facebook
Continue with Email
Transthyretin amyloid polyneuropathy (ATTR-PN) is a rare, inherited type of amyloidosis that affects the nerves. Because these nerves control physical sensation and automatic bodily functions, it can lead to problems with sexual function.
Understanding how your sexual health may be affected by ATTR-PN can help you work with your doctor and sexual partner to find solutions that can support your intimate relationship.
Research has found that more than 40 percent of people with transthyretin amyloidosis (ATTR) experience sexual dysfunction. ATTR amyloidosis occurs when misfolded transthyretin proteins build up in the body. ATTR-PN is a subtype.
More than 40 percent of people with ATTR amyloidosis experience sexual dysfunction.
In men with ATTR, erectile dysfunction — the inability to achieve or maintain an erection — is the most common sexual problem.
In addition to erectile dysfunction, someone may experience retrograde ejaculation, also known as dry orgasm. This causes semen to enter the bladder during orgasm instead of being released from the penis. Retrograde ejaculation is not harmful, but it can be confusing and it can affect fertility.
Over time, the physical fatigue and emotional toll of managing ATTR-PN can also lead to less interest in sex.
In women with ATTR, the most common type of sexual dysfunction is difficulty with sexual arousal. Reduced blood flow to the genitals and dulled nerve sensitivity make it difficult for the body to become or stay sexually excited.
One small study found that women with hereditary ATTR amyloidosis were about four times more likely to have sexual dysfunction than healthy women without the condition.
Symptoms of sexual dysfunction can include:
ATTR-PN can affect sexual health for several reasons. The disease can affect physical and psychological health, both of which can impact sexual function and intimacy. Here are some of the main ways that ATTR-PN can impact sexual well-being.
Nerve damage from ATTR-PN can affect the autonomic nervous system and cause a condition known as autonomic neuropathy.
This autonomic dysfunction can cause complications with sweat glands, digestion, blood pressure, urinary incontinence (leaking urine), and sexual organs. Urinary symptoms and recurring urinary tract infections can interfere with sexual activity and comfort.
In ATTR-PN, amyloid deposits build up inside small blood vessel walls and disrupt the nervous system’s ability to signal vessels to expand — known as vasculopathy. This is particularly an issue for people who develop the condition later in life. It can reduce blood flow to the sex organs, which can make it harder to get an erection or produce natural vaginal lubrication.
Damage to sensory nerve fibers can reduce sensation in the skin and body, including the genitals.
Sensory problems can also cause skin to become oversensitive, leading to tingling or burning sensations. This can make touch painful or uncomfortable. You may also experience numbness and not be able to feel any kind of sensation on the skin.
Systemic symptoms like chronic pain, tingling, numbness, gastrointestinal distress (alternating diarrhea and constipation), muscle weakness, and urinary problems can make it hard to feel sexually aroused.
Fatigue is one of the most significant symptoms of ATTR-PN. Research in people with chronic diseases shows fatigue can play a large role in sexual dysfunction. Problems include a lack of interest in sex and decreased satisfaction with sexual activity.
How you feel emotionally and mentally can affect your sexual desire and your ability to perform sexually. Living with ATTR-PN can have a considerable psychological impact.
ATTR-PN can affect self-esteem and cause mental health problems such as depression and mood swings. In some cases, managing the disease may be time-consuming or overwhelming for both you and your partner.
Many people with ATTR-PN experience a range of stressful emotions. Feelings such as anxiety, fear, and insecurity are common with ATTR-PN and can impact sexual function.
Sexual intimacy is a personal issue and talking about sexual problems can be difficult. Feelings of embarrassment, shame, or shyness may come up. But talking to your doctor and your sexual partner is the first step in addressing sexual dysfunction.
First, it’s important to be sure your ATTR-PN treatment plan is as effective as possible. Always let your doctor know if you have any new or changing symptoms, including symptoms that affect your sexual function and sexual well-being.
Managing symptoms and slowing the progression of ATTR-PN can help reduce symptoms related to sexual health. If you’re not happy with your treatment plan, you can discuss other treatment options with your doctor.
Talk to your doctor about medications that help increase blood flow in the penis, such as sildenafil or tadalafil.
These medications may be effective for erectile dysfunction in people with ATTR-PN. However, they may aggravate orthostatic hypotension — a sudden drop in blood pressure — which can be a symptom of ATTR-PN.
If oral drugs are unsafe or ineffective, your doctor can recommend other treatment options like vacuum erection devices or urethral suppositories that can help produce an erection.
There are many potential treatment options for sexual dysfunction in women.
Your doctor may recommend medications used to treat lack of desire, such as flibanserin (Addyi). In some cases, a doctor may recommend testosterone, which is used off-label to treat problems with sexual desire.
If you are in perimenopause or are postmenopausal, you may also want to discuss treatment options that address issues related to genitourinary syndrome of menopause (GSM). GSM can cause vaginal dryness and painful sex, among other issues. Vaginal estrogen is one of the most effective treatments to rebuild delicate tissue and relieve painful intercourse.
Cognitive behavioral therapy (CBT) is a type of psychotherapy (talk therapy) that can be effective in treating sexual dysfunction. It can also help couples communicate in a couples therapy setting.
CBT is aimed at building healthy lifestyle habits and reducing negative thought patterns. With sexual dysfunction, CBT can help relieve anxiety about sexual expectations and improve self-confidence.
Your healthcare team can give you a referral to a psychotherapist who practices CBT. A therapist experienced with chronic illness can help you and your partner to adapt your sexual expectations and find fulfilling ways to connect.
Sexual intimacy in a relationship is built with meaningful and open communication. Set aside time to talk with your partner about any sexual problems that have developed.
Sexual intimacy in a relationship is built with meaningful and open communication. Set aside time to talk with your partner about any sexual problems that have developed.
Sharing difficult thoughts and feelings can help bring you closer to your partner. Through that closeness, you can work through sexual problems and discover new ways to be together.
ATTR-PN is a progressive disease, and as your symptoms change, your sexual activity may also need to change. With trust and patience, your partner can be your closest ally as you navigate the sexual challenges of ATTR-PN.
On MyAmloidosisTeam, people share their experiences with amyloidosis, get advice, and find support from others who understand.
Have you managed sexual dysfunction with ATTR-PN? Let others know in the comments below.
Get updates directly to your inbox.
Continue with Facebook
Continue with Email
Continue with Facebook
Continue with Email
Become a member to get even more
Join
Your Privacy Choices
This is a member-feature!
Sign up for free to view article comments.
We'd love to hear from you! Please share your name and email to post and read comments.
You'll also get the latest articles directly to your inbox.