Sex! Stubborn libido and ED? Yes, you definitely can blame your MS says study

[ActiveMSers]

If you are not in the mood or have trouble, ahem, rising to the occasion, you are so not alone. While this study reminds us that MS can make things more challenging in bed, at ActiveMSers we are all about making the best out of what we have. So, do we have any sex tips? I'll post mine if you post yours. - Dave

Sexual disorders evaluation among people with multiple sclerosis: features and clinical correlations

C. Cornut-Chauvinc, M. Lauxerois, P. Clavelou on behalf of the Reseau SEP Auvergne

Objective: Sexual disorders (SD) are frequent, often underestimated and/or neglected by neurologists and patients. However SD affects young people and severely impacts their quality of life. Based on investigation of the frequency and the features of SD for multiple sclerosis (MS) patients, our study aims to establish relationship between clinical data and identify predictive factor of SD.

Methods: We developed a structured survey form sent by mail to eligible patients. Six questionnaires were selected, related to sexual dysfunction, (international index of erection function, sexual expectation evaluation in multiple sclerosis, multiple sclerosis intimacy and sexuality questionnaire-19), anxiety (STAI form YA and YB), depression, (Beck questionnaire) and quality of life (SEP-59). Inclusion criteria were: age comprised between 20 and 60, disability inferior to 7.0 measured by Expended Disability Status Scale (EDSS), no cognitive impairment and relapsing remitting MS.

Results: Out of three hundred eight eligible patients, hundred and forty one returned the questionnaires achieving a response level of 45, 7%. Sixty-eight patients ( 55, 3%), suffered from SD. 49, 5% of women reported sexual dysfunction. Decreased libido for 77, 7% of women, was the most frequent primary SD; problems with concentration, for 74, 8% of the cases, was the most frequent secondary symptoms; low self –esteem and deteriorated body image existed for 66.7% of MS patients. Depression, measured with Beck’s depression scale was positively correlated with SD for women. SD were found in 81, 8% for men. The most frequent primary SD was erectile dysfunction for 75% of men. 68% described problems of concentration, the most frequent secondary SD. The most frequent tertiary SD was fear to not satisfy their sexual partner. We showed a correlation between disability, quality of life, mainly in five domains: pain, sexual satisfaction, sexual function, bladder dysfunction and cognition and SD.

Conclusion: Sexual disorders are frequent and correlated with disability. Depression is most frequent for women with SD. Quality of life is altered in patient with SD. Physicians have to ask patients about their sexuality to make easier the discussion and help them find appropriate solutions.

[Niko]

I'm only 21 and have noticed significant changes, especially in my libido. I believe that it has affected not only my sex life with my partner, but my attraction to both him and other people. I don't just mean sexual attraction, but that other sort of feeling of connectivity with others (male/female), friends or strangers.
It is discouraging and it makes me apologetic and want to distance myself away from sex and intimacy. But that's not the way to go!

So far I have used dark organic chocolate, sometimes chocolate maca powder drink (mmmm!), or I think maybe a small vibrator might work beforehand? Also I don't think people should feel shy about using lube, as it helps a lot.
Foreplay becomes crucial too, as it takes me longer to feel aroused than I used to, and compared to my partner.
And it always help to just be intimate in other ways at other times too. Hugs are delish

Any other tips?

[Niko]

Also, it might be worthwhile to take some time alone to re-explore and re-learn your body. See what changes were done, and don't be discouraged! Just see what new things might work, maybe experiment with some toys (as long as you are comfortable), porn, etc....
Meditation and visualization beforehand have also helped me feel more at ease and more aroused before the actual start.

[ActiveMSers]

Niko, you bring up some great points. I've been thinking about doing a full article on ActiveMSers about this subject, since it is often not discussed except in the most general of terms.

I would suggest using a vibrator not only before but during--make it part of the overall play, fore or otherwise. It takes a bit of pressure off the companion and makes for a reliably rewarding experience. Double thumbs up on lube and regular snuggling.

Other tips:
-If fatigue is an issue, mornings work well (and testosterone levels are higher).
-Experiment with positions. If balance (or, again, fatigue) is an issue, being on the bottom might be more enjoyable.
-Don't compare yourself to the old you. Relax and enjoy. And if you don't "finish" it's not the end of the world.
-Depression meds may help with libido--ask your doctor.
-For guys: a ring to help maintain stiffness and an ED drug may be helpful.

[Niko]

I agree, it's definitely worth to discuss this issue more. I feel that it's a topic that is seriously lacking in the MS community, maybe because of it being a very private and sensitive issue, which is totally understandable. But then people may not feel as alone, or as helpless...

Thank you for the tips Dave!

[ActiveMSers]

Agree, Niko. Fortunately I grew up in a pretty open household and nothing was off limits when it came to bedroom conversation. Heck, for years my mom drove around with a bumper sticker that said Virginity Is Curable. A little awkward when she was driving the carpool to swim lessons, ha.

[ActiveMSers]

To continue this thread, my friend Jeri Burtchell just published an article for Healthline on sex and MS. Feel free to add some of your challenges between the sheets. (Or more likely, on top of the sheets, I mean you don't want to overheat or get your legs wrapped up in unwanted fabric.) - Dave

Sexual Dysfunction: An Overlooked Side Effect of MS

More common than anyone suspects, the unspoken issue of sexual dysfunction affects more than half of the MS population.

Researchers delved into the private lives of men with multiple sclerosis (MS) in a recent study and discovered that sexual dysfunction is a common MS complication. Although it’s a topic patients may be reluctant to discuss with their neurologists, they should be aware that intimacy problems are often treatable

http://www.healthline.com/health-new...-effect-041614

[ActiveMSers]

And for those who have a great tip or discovery but would rather not post it under your screen name, send it to me directly at dave@activemsers.org and I can post it anonymously for you here.

[ActiveMSers]

For women with MS who have partners who just don't get it. But might be able to understand science. This study was just released at the AAN conference. - Dave

Multiple Sclerosis Compromises Various Aspects of Female Sexual Function

Julia Koehn, Ralf Linker, Tassanai Intravooth, Carl Crodel, Martina Deutsch, De-Hyung Lee, Max Hilz
Erlangen, Germany

Background: Multiple Sclerosis (MS) can deteriorate sexual function. So far, prevalence of female sexual dysfunction (FSD) in MS-patients is not well determined.

Objective: To assess FSD prevalence in female MS patients.

Methods: In 82 women (36.7±9.5 years) who have had a diagnosis of MS for 69.0±75.1 months and in 21 healthy women (36.5±11.8 years), we assessed scores of the 19-item Female Sexual Function Index (FSFI) evaluating desire, arousal, lubrication, orgasm, satisfaction and pain, and defining FSFI sum scores below 26.55 as indicative of FSD (Rosen et al. J Sex Marital Ther. 2000;26:191-208). We compared patient and control FSFI-scores using the Wilcoxon test for paired samples; significance was assumed for p<0.05.

Results: 37/82 (45.1%) MS-patients and 1/21 (4.8%) healthy women had FSFI-sum scores below 26.55, i.e. met FSD criteria. In MS patients, FSFI-scores were significantly lower for desire (3.3±1.3 vs. 4.5±0.7; p<0.0001), arousal ability (4.1±2.0 vs. 5.2±1.3; p=0.005), lubrication (4.2±2.3 vs. 5.4±1.3; p=0.009), orgasmic function (3.6±2.2 vs. 4.9±1.3; p=0.008), sexual satisfaction (4.1±1.2 vs. 5.1±0.9; p=0.032), pain (4.3±2.3 vs. 5.4±1.4 vs.; p=0.012) and the FSFI-sum score (23.5±10.7 vs. 30.3±5.8; p=0.003) than in healthy women.

Conclusions: In our group of female MS patients, FSD was rather frequent (45.1 %), and patients had a high prevalence of desire dysfunction, arousal disorders, lubrication, orgasmic dysfunction, sexual dissatisfaction and pain during intercourse suggesting associations between sexual dysfunction and MS-lesions. MS-associated cerebral and spinal cord lesions might compromise brain areas involved in sexual function. Reduction of sexual functions adds to a reduced quality of life in MS patients.

[teena marie]

In 16 years dealing with neurologists, no one ever asked about sex. I have to wonder what century we live in.

A friend of mine swears by coconut oil as a lubricant. Initially, it's a solid substance but melts quickly as it warms up on hands.

Open communication and a sense of humor are other great helpers.

Happy spring to all.

Teena Marie

[ActiveMSers]

More on the topic from the 2019 AAN conference... It's waaay common. -D

Sexual Dysfunction in Multiple Sclerosis: A Systematic Review and Meta-Analysis of
Prevalence

David Kim, et al

Objective:
To perform a systematic review and meta-analysis to estimate the point prevalence of sexual dysfunction (SD) in multiple sclerosis (MS) patients, total and stratified by gender.

Background:
Although SD is commonly observed in MS patients, it is frequently overlooked in the clinical setting. There remains limited consensus on the actual prevalence and determinants of SD in patients with MS.

Design/Methods:
Relevant literature databases were searched for studies reporting on the prevalence of SD in MS between January 1977 and January 2015. Random-effects models were used to pool reported prevalence of SD in MS. Stratified meta-analysis and meta-regression were used to estimate differences due to study-level characteristics. Heterogeneity was assessed using DerSimonian and Laird’s Q-test and the I2-index. Sensitivity analyses were performed to assess studies deemed to have low risk-of-bias (ROB) according to a modified version of the Newcastle-Ottawa Scale.

Results:
6135 studies were retrieved, of which 43 met inclusion and exclusion criteria. The overall pooled weighted prevalence of SD was 58% (6635/14538 individuals, 95% CI, 52-64%), 63% in women (95% CI, 53-74%; n=27 studies), and 62% in men (95% CI, 54-69%; n=24 studies). There was significant between-study heterogeneity (all MS: Q= 1608.63, I2 = 97.39%; women: Q= 1608.63, I2 = 97.39%; men: Q=302.34, I2 = 92.39%, p<0.01 for all). Pooled meta-regression did not indicate a significant association of SD prevalence with age, disability (Expanded Disability Status Scale), duration of disease, or proportion with relapsing-remitting disease. A sensitivity analysis including only studies deemed to have low ROB did not result in a significant difference in the pooled prevalence of SD (55%, 95% CI, 48-62%, p=0.95).

Conclusions:
SD is highly prevalent in MS patients, across the spectrum of disease. These data highlight the need for increased recognition of SD within MS clinical practice and evidence-based approaches to address this facet of
the disease.