Sexual disorders are common in women; however, the neurological basis of female sexual response has not been adequately investigated. This information is necessary to characterize the impact of various neurological disorders on sexual arousal in women and to develop appropriate management strategies for sexual dysfunction. To assess the spinal mediation of sexually stimulated genital vasocongestion in women, we conducted two laboratory-based, controlled analyses: (1) of women's genital, subjective, and autonomic responses to audiovisual erotic and audiovisual erotic combined with manual genital stimulation; and (2) of women's ability to achieve orgasm. Subjects included 68 premenopausal women with spinal cord injuries (SCIs) and 21 able-bodied, age-matched controls. Results indicated that preservation of sensory function in the T11-L2 dermatomes is associated with psychogenically mediated genital vasocongestion. Less than 50% of women with SCIs were able to achieve orgasm, compared with 100% of able-bodied women (p = 0.001). Only 17% of women with complete lower motor neuron dysfunction affecting the S2-S5 spinal segments were able to achieve orgasm, compared with 59% of women with other levels and degrees of SCIs (p = 0.048). Time to orgasm was significantly increased in women with SCIs compared with able-bodied controls (p = 0.049). Independent raters were unable to differentiate between subjective descriptions of orgasm from SCI women compared with controls. This information should be used when counseling women with spinal dysfunction about their sexual potential.
How can we remove possible Peri/Menopausal symptoms from what may be MS produced symptoms? As a 45 year old any issues I often attribute to potential onset Menopause rather than MS, maybe wrongly. It would help if every woman got a pre-Menopause lecture on what to expect, as there is an assumption we discuss it - and we don't! Its like pregnancy, women don't talk about it until they are experiencing these periods in their lifetime (as a teenager why would I know about menopause or what happens when you get pregnant?). I sat in a pre-natal meeting with other pregnant women and they gave us about 5 minutes of what happens when you give birth. Pretty fundamental stuff, and this is no different. Tacit knowledge is lacking, lived experience doesn't get passed on as we think it does.
A good point. Yes, you are right (1) there are MS symptoms, (2) there are menopausal symptoms and (3) there are MS symptoms made worse by the menopause. I could get a guest writer, with both MS and the lived experience of being menopausal, to cover this issue and is a good topic for the MS-Selfie Self-Management course I am planning.
Sounds great. I loved the MS Selfie 'Top Trumps' cards you produced. Not that this works for that idea but some Case Studies could be helpful to illustrate. People's lived experience of MS and Menopause would be interesting as a starting point to educating individuals enough to try and differentiate. Is it correct that GP's don't get taught about the Menopause? Not that it should be a GP's remit to teach women about a life stage we all eventually encounter but there is definitely a gap in reliable, easily accessible and relatable information.
Re: "Is it correct that GP's don't get taught about the Menopause?"
Incorrect! All GPs get taught about the menopause. I had several lectures on it in medical school. It was covered as part of obstetrics and gynaecology and separately in endocrinology. As a medical student I attended a menopause clinic.
This is good to know, thank you, I'd been informed otherwise. Although I do think its up to females to figure out there own journey with this, which we can't do without access to decent information. After my first (biggest) MS episode I had some issues with sexual dysfunction (which resolved itself as I was only 30 and bounced back more physically). I bought this up at my (first) Neurological follow-up with a Neurologist who specialised in MS. He said (these words), "Do you have a new boyfriend?" - Which I said yes, fairly new. He replied, "Well you need to instruct him better", and (NO JOKE) almost smirked at me. Implying he wasn't 'hitting the spot' which was really missing the entire point and not helping me at all. I changed Neurologist.
I get a sense that even remotely that women are reluctant to share their experiences. Does anyone belong to a private Facebook group or equivalent forum where women share their experiences around the issue of female sexual dysfunction?
I think it is very complex. As a female, unlike a man with ED we can still enjoy the closeness of sex. However it can be frustrating. My brain sometimes just cuts out, or jumps a wire where Orgasms are concerned. There’s often a sense of “ well at least I can do this or that”, like a pay off. I’ve never been asked by a neuro. I know he would be awkward, I’ve been told by others of their experiences.
I’ve recently purchased a Kegel8 to help with bladder and sensation. So I’ll have to report back in a month.
Sorry ladies but I have had to gate crash this. Yes male sexual dysfunction is more obvious however the anguish is the same. In the 24 years I have had PPMS, 18 of those without diagnosis I have never been asked by any Neurologist, Doctor, MS Nurse or any other of the many health professionals about sexual dysfunction. I had them for years. Now that I’m being divorced I’m alone probably for the rest of my life and I guess it’s over for me. It has had a massive negative impact on me and I be had to accept it. It may be more visible but nothing is done about it.
I have never been asked about sexual dysfunction related to my MS, but it was actually one of my first symptoms. It is also had to figure out which is related to approaching menopause as all of my MS symptoms started after the birth of my last child at age 41. My first MS symptom was tight muscles and very severe vaginal pain caused by tight pelvic floor - it always felt like it was burning. I started HRT which helped with other symptoms - but not vaginal pain. It took me to pelvic floor therapy, vaginal estrogen and also using a pelvic floor wand every single day to keep the pain level down. This of course has made sex very difficult and painful unless I use muscle relaxers. Ironically, when I was in the hospital ER getting diagnosis for MS, i mentioned the pelvic floor issue and the neurologist said most women they see in hospital with MS have same issue as me. I wish someone would have pointed me to MS as it would have prevented the accumulated disability due to late diagnosis at age 49.
Re early symptoms- same here. The most obvious symptom from my second relapse although not discussed as was dealing with pins and needles with numbness down my left side. Unfortunately like many symptoms it becomes the new normal for you.
I've never been asked about this but I used mention it every time I saw my very progressive new neurologist. Eventuallly after 3rd time of mention it he said he could refer to sex therapy which in my view I don't need!
He couldn't say how that would help and what would happen there as he didn't know! I decided not to put myself through it as it's clearly some weird nerve damage thing thats affected orgasm despite all encouraging options.
Interesting you mention referring to sexual dysfunction clinic and it would be good to know what goes on there that helps women.
Anyway it's been a sad thing to lose easy access to the Big O and I have had to deal with it with acceptance rather than struggle.
Hi Vincentina. I did exactly the same as you. My first visit after being referred by my GP (for pins and needles and little sensation in my legs, and balance difficulties), I told the male consultant I was unable to achieve orgasm anymore, by any means, which was one of my major worries. I had surgical menopause at the age of 35, and have taken HRT since. No change in medication either. He was extremely embarrassed, went visibly red, and ignored the comment. In the letter to the GP he wrote I had difficulty with my 'lady parts'.
I have read almost every research paper on the subject (I don't remember a British one), in which there have been trials with similar drugs given to men. Some have been fruitful, but it seems to depend upon the difficulty. The most helpful advice I have seen is by Dr Aaron Boster. If you search through his video list on you tube, he has one on this very subject. He speaks frankly and open, and the one solution he has for anorgasmia is 'the most powerful plug-in device you can find', as the more direct stimulation the clitoris has, the greater chance of overriding the absence of nerve.
I feel your pain in losing the Big O, but a man does not seem to understand, and certainly is without empathy. I was within an inch of asking the consultant how he would feel if he lost the ability! It seems such a minor thing for him, and you are the first woman writing about it in the same way I feel. It appears to not bother some women either!
I have not yet searched for the multi plug-in as it would now seem I have myeloma, but I will not give up.
Good luck. Eve
NB. I had to snigger when I wrote anorgasmia, it was overridden by 'anorexia', but the funniest was clitoris became 'California' and just now as 'Clifford '. Maybe if the words were renamed, doctors would be able to talk about it. I do not include Prof G, but I was surprised that he did not talk about it in his consultation.
Re: "I do not include Prof G, but I was surprised that he did not talk about it in his consultation."
I have started. I think I have overcome my cognitive biases, but saying this very few patients and that includes both men and women want to discuss things. If 2 in 3 women with MS have sexual dysfunction a discussion about sexual dysfunction should be as common as MS-related fatigue, but it isn't. This is why we need a different way of identifying and managing these hard to talk about problems. Starting here is one way.
Please be aware that anorgasmia is very common in men who have MS as well. The fact that men may still get erections is no guarantee that they are able to reach a climax. A similar problem exists for people with spinal cord injuries.
Hi Eve, like you, I went through chemical menopause at 42. I passed on the tamoxifen and aromatase inhibitors, since I was triple negative breast cancer, so that helped. At first things worked fairly well with topical testosterone. As MS progressed, however, things simply become impossible. Neurologists discussing this? Are you kidding? They simply suggested taking it up with the gyn. Since my first symptoms, aside from balance etc were lesions on T spine, I soon began having very little feeling with anything in the lumbar area. My gyn had nothing, zero, to offer me since it was “nerve related”. As far as orgasms are concerned, I threw in the towel. There is nothing worse than working oneself up and…wimp out. That is frustration of the sob producing variety. As far as men are concerned, I found when I was younger in my marriage that traditional vaginal sex was the “big deal” and even though I was willingly to accommodate, I felt nothing, so my head would be saying “just get on with it, for god’s sake”. The memory my spouse had of me was NOT what I became with MS. And since traditional vaginal sex was what my spouse wanted, I eventually shrunk further and became germ phobic, particularly since I was catheterizing and had constant UTIs. I certainly would have been willing, particularly when I was younger to discuss this with my neurologist, but the attitude has been well, sorry about this! Well, yes, we are too. I’ll take a gander at Dr Boster. Prof G, thank you for raising this topic. Wow! I didn’t think I felt so strongly about this issue. Perhaps I’ve just suppressed it. I guess I’m glad I whooped it up in my 20s!🌷
As soon as I was diagnosed with MS, I have been treated as a non sexual being by all my providers. All questions dealing with sexuality are no longer asked. I get the feeling it is just assumed I no longer have a sex life. Even when I’m giving a pap, they don’t ask if I’m sexually actively. No one asked about birth control either, when I was young enough to need it. I don’t require it anymore. I had trouble achieving orgasm a few years ago, but once I started eliminating some meds, that problem was resolved. And as I’m 56 and post menopausal, my husband and I use a lot of lube. That helps with vaginal dryness. I also insert vaginal gel made specifically to deal with dryness, every once in awhile. Replens is the product name.
Hi Me, yes it can be done with lube, and there are suppositories that also help prevent UTIs. Nothing helped with orgasm, however. Can you tell me what meds helped that you eliminated? I’d love to know. 🌷
Hi Jennifer, the one suggested by the urologist are called Vagibiom, which has a protective probiotic and hyaluronic acid and is meant to protect the urethra. I use them every other night. I am in the states and use their web site, but I wouldn’t think they should be difficult to find. I hear your fear! 🌷
Would you please say more or give more info on prophylactic treatments/ideas for utis? I can't find the original comment but you mentioned antibiotics and antiseptics i thin - what do you mean by the latter? Thanks
Hi Bluebird, my urologist has me using a probiotic suppository every other night called Vagibiom. It is supposed to protect the urethra. It has probiotics and hyaluronic acid.
Hi Bluebird, I’ve been using the suppositories faithfully, though I’ve had a record number of UTIs. Grrr. I get the product through their site. (https://vagibiom.com/) If you are in the UK, you can likely use Amazon. Hope that helps.🌷
FSD has never been discussed in my annual reviews with my neurologist the question hasn't been asked by my male neurologists in the 9 years since my diagnosis. I would probably not react well to questions about it because I suffered from endometriosis when I was younger two laparoscopy's to evidence it in my medical notes!
Thanks for pointing out it could potentially be an issue for women and where to look for reliable information.
Your posts always make me think Prof G, keep up your informative posts :-)
Jul 21, 2023·edited Jul 21, 2023Liked by Gavin Giovannoni
As a female MSer with sexual function still mostly intact, with adaptations (at least for now), I've thought a fair bit about this. And, I am absolutely posting this here because I agree 100% that women don't talk about these things enough. My thought is, that MS already tries to steal enough from us, I'll do whatever it takes to ensure I get to keep enjoying this aspect of life!
As others have mentioned, there are overlapping issues re:women and sexual dysfunction. It's hard to separate MS-related sexual disfunction from peri/menopause, next from antidepressants for depression and/or nerve pain (most antidepressants impact sexual functioning or make it difficult/impossible to climax), bladder changes -- this is potentially a missed factor, if/when women deal with either bladder dysfunction or change, having to wear pantyliners/pads or catheterization can have an impact on one's self esteem relating to their "neither regions" so to speak. Next, as a women I distract easily, and having nerves in pain or constantly buzzing can certainly steal one's attention from thoughts of sex (women have a harder time compartmentalizing like men can). Fatigue. Loss of sensation can steal the pleasure from sex and make it a mechanical. Also, unfortunately apparently a not insignificant percent women *already* have a difficult time with sex, before MS. Fear of bladder infections from sex "honeymoon cystitis" and the effect this can have on MS. There's just a lot of factors.
One I wish I had known sooner was, that even if an antidepressant initially makes it difficult/impossible to enjoy sex or climax, after the body adjusts, with more time taken (sexual function on antidepressants for women can just delay and make it more difficult to enjoy sex), enjoyment can often be found again... though I've heard many women say rather that they never took time enough, or just gave up. Personally, I feel that sex and sexual function can only get better if there's a level of communication and comfort built around talking about it, exploring the issues, and finding ways around them. Life is too short to not muster courage get over early insecurities and talk about it. I also don't want to look back and wish I had. And so much about MS for me is not about what I "can't do", but instead about what I have to do differently. The more adaptable I am with MS in general, the better I tend to do with all things MS. There's so many things that can be tried to get around MS issues but it takes that willingness to adapt.
There's also a lot of things people can do differently. Persistence, more time, trial and error, and different meds regarding antidepressants. Toys can help with lack of sensation or the former. Cannabis or gabapentin actually helps with the distraction part and living in one's intended senses enough. Nerve pain meds to reduce the distraction part. Both partners always showering before sex for worries about "honeymoon cystitis" and/or bladder insecurity concerns. If low libido is a concern, there are plenty of woman-specific ways to help stoke the libido (romance novels). Counselling related to sex and intimacy (or counselling period if depression is a factor). Lubes for peri/menopausal women to help with dryness, plus HRT... just off the top of my head. Yes, there are things that can be done, no they won't get done if providers aren't making an effort, and patients also aren't. I think there needs to be a sex ed curriculum for MSers!
Here’s another publication with some articles on intimacy. There seems to be little out there available solely focussing on women, however, unless they are studies, that say, yes, we are all having issues. Eye roll. Problem is this one or the other may require ordering pamphlets from the states. (Another eye roll…) Hope maybe some of this helps.
I thought my fsd was due to menopause. I've been on hrt that didn't help. Then i was given testosterone. Did not help either. Made me very stroppy quick tempered so I stopped.back on my gel and pill hrt. I feel that side of my life is over . Which has caused endless issues with my partner. He says he understands but his actions when hes frustrated prove otherwise. The end of out relationship is iminant
The relationship part is so difficult to manage and deal with for any pwMS. I see the dynamic changing slowly everyday and the pressure it puts on those close to you. The transition to the carer relationship worries me most albeit with my best friend. Something you wouldn’t wish on that person. 🤝
Dear Jim_ie, My partner is not a physical carer. He cannot see me in that way. I have also lost old friends because I’m not that old me. It is indeed so difficult. My empathy and best to you.🌷
I have had MS for 30 years, probably 45 years, looking back. Not once, in all those years has my neurologist, MS nurse or urologist EVER asked about sex. In men, sexual dysfunction is more obvious, so I suspect that's why it's brought up straight away. UTIs is a very common reason to 'put off' sexual intimacy but I have never been offered prophylaxis.
I am someone who researches extensively, because my MS neurologists have admitted they nothing about RLS. I became an expert on that & now campaign to get dopaminergic drugs banned, iron infusions as first line treatment and opioids as second line treatment.
So I researched sexual dysfunction and sorted it myself. However, many others will not have the time or inclination. I suspect some older female patients may be embarrassed, but the subject should be fully discussed.
how can a neuro NOT know about RLS? I get that. I have RLS.. it is severe. It affects my entire body. It's maddening. They offered the ropinirole which I was already taking and then said there isnt much else to help. WHAT? I discovered pressure points and use a TENS unit on those points to relieve the RLS.. I am looking into acupuncture but cannot afford it at the moment. FSD has never been asked about. I guess at my age you are expected to be celibate. I am 65. But have had issues for years. I get crickets mostly when I bring it up. I can't help shaking my head over this. I was a 65 year old man i would be offered blue pills and whatever else because its a big deal when it happens to men.. But as a woman we are left to hang out to dry. We dont seem to matter on this issue. IDK. I dont feel that the sexes are treated the same way. on anything. I have never been taken seriously on so many issues.
RLS is not taught at ANY stage in medical training. The medical profession think it is either rare or insignificant. It affects 10% , 2% have it severely, every night. I became an expert because of total lack of knowledge by my neurologists and doctors. Ropinirole and Pramipexole are STILL first line treatment, despite the world experts advising how dangerous they are. They cause permanent damage to dopamine receptors.They cause severe worsening of the disease(augmentation) and most doctors increase the dose, making it even more unbearable.
It is terrifying.
I joined RLS-UK as a member, then as a trustee and spend my time researching and trying to force the UK medical Profession to teach it fully and using the Mayo Clinic Algorithm. So far, RCGPs & ABN have refused. Barts have been brilliant and one of their medical students has just done a PhD on lack of knowledge about RLS.
RLS UK is trying to stop Ropinirole,Pramipexole and Neupro patch being prescribed. Tragically, One of our members has just died after a fall trying to walk off severe augmentation. Her neurologist had no idea how to help her.
Treatment is surprisingly simple compared to other neurological diseases. RLS-UK are trying to educate doctors by ensuring RLS is taught at ALL stages in training and that dopamine drugs are NOT prescribed unless every other treatment has failed. We want iron infusions as routine first line treatment and low dose opioids to be trialled and licensed. NICE cks guidance is outdated. If
1. Ensure serum ferritin is above 100, preferably 200 ( iron infusions).
2. Stop/ replace exacerbating meds ( anti histamines/ anti depressants/ statins/ beta blockers/ PPI.
3. If that fails, prescribe pregabalin or gabapentin, at NIGHT only.
4. If 3 doesn't help, prescribe methadone or Buprenorphine. Long lasting opioids at low dose are very effective, especially when dopamine receptors have been damaged after years on DAs.
Please join RLS-UK help forum on Health Unlocked. Ropinirole is causing severe worsening of your RLS. The D1 dopamine receptors become over stimulated and scream out for their hit of Ropinirole. This causes more severe,all over RLS.
The ONLY solution is a slow reduction by 0.25mg every 2 weeks. You may need a low dose opioid to settle withdrawal symptoms with each drop. There are so many research articles in this.
Once you are 4 weeks from the last dose drop, you start an alternative drug. Pregabalin is the usual choice, but low dose, long lasting opioids are often needed.
Raising brain iron helps 60%, but in MS, spinal lesions are the usual cause of RLS, so medication is needed.
Please do look at RLS-UK. The detailed information about augmentation and the Mayo Clinic Algorithm and a link to the Help Forum is all there. Usually, I would Always say listen to your doctors, but I guarantee they will not have been taught about RLS or have read the Mayo algorithm in full.
I have never been asked by any health professionals about FSD. After the birth of my first child for over 2 years I had pain with vaginal sex. I asked my GP, who referred me to a gynaecologist who was only interested that I was wanting another child but not yet pregnant. She said the fertility stuff she could fix, the pain, tightness, no pleasure part nothing could be done and I would just have to deal with it.
The book “Come as You Are” by Emily Nagoski is very good. She is a sex educator and researcher, and she gets that it is so much more than just vaginal penetration. It is about pleasure. How your stress, environment, your feelings towards your body, worries about consequences ie STD, pregnancy or UTI, and previous experiences all affect your sexual pleasure at that time. That there is a brake and a gas pedal that affect your sexual pleasure and how to turn off the things hitting your brakes and how to turn ON the things pressing your gas. That everyone is different but made up of same parts, that no one is broken. 💕
Dr. Emily Nagoski has a 10 episode podcast “Come As You Are” available for free as well.
"How big is the problem?" Well, I certainly have nerve damage involving desire above all. But my question is: is it really such a big problem? I mean: as a 44y.o.-pwMS I have so many worrying things to think about that sex isn't probably at the top of the list...Plus kids, old parents and other family issues, a job, housekeeping, cooking, exercising, remembering about all the MS related stuff... and and and...
This is the kind of study that needs to be done in MS.
Sipski et al. Sexual arousal and orgasm in women: effects of spinal cord injury. Ann Neurol. 2001 Jan;49(1):35-44.
https://onlinelibrary.wiley.com/doi/full/10.1002/1531-8249%28200101%2949%3A1%3C35%3A%3AAID-ANA8%3E3.0.CO%3B2-J?sid=nlm%3Apubmed
Sexual disorders are common in women; however, the neurological basis of female sexual response has not been adequately investigated. This information is necessary to characterize the impact of various neurological disorders on sexual arousal in women and to develop appropriate management strategies for sexual dysfunction. To assess the spinal mediation of sexually stimulated genital vasocongestion in women, we conducted two laboratory-based, controlled analyses: (1) of women's genital, subjective, and autonomic responses to audiovisual erotic and audiovisual erotic combined with manual genital stimulation; and (2) of women's ability to achieve orgasm. Subjects included 68 premenopausal women with spinal cord injuries (SCIs) and 21 able-bodied, age-matched controls. Results indicated that preservation of sensory function in the T11-L2 dermatomes is associated with psychogenically mediated genital vasocongestion. Less than 50% of women with SCIs were able to achieve orgasm, compared with 100% of able-bodied women (p = 0.001). Only 17% of women with complete lower motor neuron dysfunction affecting the S2-S5 spinal segments were able to achieve orgasm, compared with 59% of women with other levels and degrees of SCIs (p = 0.048). Time to orgasm was significantly increased in women with SCIs compared with able-bodied controls (p = 0.049). Independent raters were unable to differentiate between subjective descriptions of orgasm from SCI women compared with controls. This information should be used when counseling women with spinal dysfunction about their sexual potential.
How can we remove possible Peri/Menopausal symptoms from what may be MS produced symptoms? As a 45 year old any issues I often attribute to potential onset Menopause rather than MS, maybe wrongly. It would help if every woman got a pre-Menopause lecture on what to expect, as there is an assumption we discuss it - and we don't! Its like pregnancy, women don't talk about it until they are experiencing these periods in their lifetime (as a teenager why would I know about menopause or what happens when you get pregnant?). I sat in a pre-natal meeting with other pregnant women and they gave us about 5 minutes of what happens when you give birth. Pretty fundamental stuff, and this is no different. Tacit knowledge is lacking, lived experience doesn't get passed on as we think it does.
A good point. Yes, you are right (1) there are MS symptoms, (2) there are menopausal symptoms and (3) there are MS symptoms made worse by the menopause. I could get a guest writer, with both MS and the lived experience of being menopausal, to cover this issue and is a good topic for the MS-Selfie Self-Management course I am planning.
Sounds great. I loved the MS Selfie 'Top Trumps' cards you produced. Not that this works for that idea but some Case Studies could be helpful to illustrate. People's lived experience of MS and Menopause would be interesting as a starting point to educating individuals enough to try and differentiate. Is it correct that GP's don't get taught about the Menopause? Not that it should be a GP's remit to teach women about a life stage we all eventually encounter but there is definitely a gap in reliable, easily accessible and relatable information.
Re: "Is it correct that GP's don't get taught about the Menopause?"
Incorrect! All GPs get taught about the menopause. I had several lectures on it in medical school. It was covered as part of obstetrics and gynaecology and separately in endocrinology. As a medical student I attended a menopause clinic.
This is good to know, thank you, I'd been informed otherwise. Although I do think its up to females to figure out there own journey with this, which we can't do without access to decent information. After my first (biggest) MS episode I had some issues with sexual dysfunction (which resolved itself as I was only 30 and bounced back more physically). I bought this up at my (first) Neurological follow-up with a Neurologist who specialised in MS. He said (these words), "Do you have a new boyfriend?" - Which I said yes, fairly new. He replied, "Well you need to instruct him better", and (NO JOKE) almost smirked at me. Implying he wasn't 'hitting the spot' which was really missing the entire point and not helping me at all. I changed Neurologist.
That is so bad!! (neuro comment)
I get a sense that even remotely that women are reluctant to share their experiences. Does anyone belong to a private Facebook group or equivalent forum where women share their experiences around the issue of female sexual dysfunction?
I belong to Reddit MS and Reddit Menopause forum and both discuss female sexual disfunction. You will find cross-over posts a well.
I think it is very complex. As a female, unlike a man with ED we can still enjoy the closeness of sex. However it can be frustrating. My brain sometimes just cuts out, or jumps a wire where Orgasms are concerned. There’s often a sense of “ well at least I can do this or that”, like a pay off. I’ve never been asked by a neuro. I know he would be awkward, I’ve been told by others of their experiences.
I’ve recently purchased a Kegel8 to help with bladder and sensation. So I’ll have to report back in a month.
Sorry ladies but I have had to gate crash this. Yes male sexual dysfunction is more obvious however the anguish is the same. In the 24 years I have had PPMS, 18 of those without diagnosis I have never been asked by any Neurologist, Doctor, MS Nurse or any other of the many health professionals about sexual dysfunction. I had them for years. Now that I’m being divorced I’m alone probably for the rest of my life and I guess it’s over for me. It has had a massive negative impact on me and I be had to accept it. It may be more visible but nothing is done about it.
Thanks for reading and apologies again.
Giovanni Nasillo
Giovanni, No need to apologize. It’s all painful and personal and not addressed nearly enough. Best to you. 🌷
I have never been asked about sexual dysfunction related to my MS, but it was actually one of my first symptoms. It is also had to figure out which is related to approaching menopause as all of my MS symptoms started after the birth of my last child at age 41. My first MS symptom was tight muscles and very severe vaginal pain caused by tight pelvic floor - it always felt like it was burning. I started HRT which helped with other symptoms - but not vaginal pain. It took me to pelvic floor therapy, vaginal estrogen and also using a pelvic floor wand every single day to keep the pain level down. This of course has made sex very difficult and painful unless I use muscle relaxers. Ironically, when I was in the hospital ER getting diagnosis for MS, i mentioned the pelvic floor issue and the neurologist said most women they see in hospital with MS have same issue as me. I wish someone would have pointed me to MS as it would have prevented the accumulated disability due to late diagnosis at age 49.
Re early symptoms- same here. The most obvious symptom from my second relapse although not discussed as was dealing with pins and needles with numbness down my left side. Unfortunately like many symptoms it becomes the new normal for you.
I've never been asked about this but I used mention it every time I saw my very progressive new neurologist. Eventuallly after 3rd time of mention it he said he could refer to sex therapy which in my view I don't need!
He couldn't say how that would help and what would happen there as he didn't know! I decided not to put myself through it as it's clearly some weird nerve damage thing thats affected orgasm despite all encouraging options.
Interesting you mention referring to sexual dysfunction clinic and it would be good to know what goes on there that helps women.
Anyway it's been a sad thing to lose easy access to the Big O and I have had to deal with it with acceptance rather than struggle.
Hi Vincentina. I did exactly the same as you. My first visit after being referred by my GP (for pins and needles and little sensation in my legs, and balance difficulties), I told the male consultant I was unable to achieve orgasm anymore, by any means, which was one of my major worries. I had surgical menopause at the age of 35, and have taken HRT since. No change in medication either. He was extremely embarrassed, went visibly red, and ignored the comment. In the letter to the GP he wrote I had difficulty with my 'lady parts'.
I have read almost every research paper on the subject (I don't remember a British one), in which there have been trials with similar drugs given to men. Some have been fruitful, but it seems to depend upon the difficulty. The most helpful advice I have seen is by Dr Aaron Boster. If you search through his video list on you tube, he has one on this very subject. He speaks frankly and open, and the one solution he has for anorgasmia is 'the most powerful plug-in device you can find', as the more direct stimulation the clitoris has, the greater chance of overriding the absence of nerve.
I feel your pain in losing the Big O, but a man does not seem to understand, and certainly is without empathy. I was within an inch of asking the consultant how he would feel if he lost the ability! It seems such a minor thing for him, and you are the first woman writing about it in the same way I feel. It appears to not bother some women either!
I have not yet searched for the multi plug-in as it would now seem I have myeloma, but I will not give up.
Good luck. Eve
NB. I had to snigger when I wrote anorgasmia, it was overridden by 'anorexia', but the funniest was clitoris became 'California' and just now as 'Clifford '. Maybe if the words were renamed, doctors would be able to talk about it. I do not include Prof G, but I was surprised that he did not talk about it in his consultation.
Re: "I do not include Prof G, but I was surprised that he did not talk about it in his consultation."
I have started. I think I have overcome my cognitive biases, but saying this very few patients and that includes both men and women want to discuss things. If 2 in 3 women with MS have sexual dysfunction a discussion about sexual dysfunction should be as common as MS-related fatigue, but it isn't. This is why we need a different way of identifying and managing these hard to talk about problems. Starting here is one way.
Please be aware that anorgasmia is very common in men who have MS as well. The fact that men may still get erections is no guarantee that they are able to reach a climax. A similar problem exists for people with spinal cord injuries.
Hi Eve, like you, I went through chemical menopause at 42. I passed on the tamoxifen and aromatase inhibitors, since I was triple negative breast cancer, so that helped. At first things worked fairly well with topical testosterone. As MS progressed, however, things simply become impossible. Neurologists discussing this? Are you kidding? They simply suggested taking it up with the gyn. Since my first symptoms, aside from balance etc were lesions on T spine, I soon began having very little feeling with anything in the lumbar area. My gyn had nothing, zero, to offer me since it was “nerve related”. As far as orgasms are concerned, I threw in the towel. There is nothing worse than working oneself up and…wimp out. That is frustration of the sob producing variety. As far as men are concerned, I found when I was younger in my marriage that traditional vaginal sex was the “big deal” and even though I was willingly to accommodate, I felt nothing, so my head would be saying “just get on with it, for god’s sake”. The memory my spouse had of me was NOT what I became with MS. And since traditional vaginal sex was what my spouse wanted, I eventually shrunk further and became germ phobic, particularly since I was catheterizing and had constant UTIs. I certainly would have been willing, particularly when I was younger to discuss this with my neurologist, but the attitude has been well, sorry about this! Well, yes, we are too. I’ll take a gander at Dr Boster. Prof G, thank you for raising this topic. Wow! I didn’t think I felt so strongly about this issue. Perhaps I’ve just suppressed it. I guess I’m glad I whooped it up in my 20s!🌷
As soon as I was diagnosed with MS, I have been treated as a non sexual being by all my providers. All questions dealing with sexuality are no longer asked. I get the feeling it is just assumed I no longer have a sex life. Even when I’m giving a pap, they don’t ask if I’m sexually actively. No one asked about birth control either, when I was young enough to need it. I don’t require it anymore. I had trouble achieving orgasm a few years ago, but once I started eliminating some meds, that problem was resolved. And as I’m 56 and post menopausal, my husband and I use a lot of lube. That helps with vaginal dryness. I also insert vaginal gel made specifically to deal with dryness, every once in awhile. Replens is the product name.
Hi Me, yes it can be done with lube, and there are suppositories that also help prevent UTIs. Nothing helped with orgasm, however. Can you tell me what meds helped that you eliminated? I’d love to know. 🌷
What suppositories are those? I also worry getting uti’s, I think about it before, during and then I worry afterwards 😞
Hi Jennifer, the one suggested by the urologist are called Vagibiom, which has a protective probiotic and hyaluronic acid and is meant to protect the urethra. I use them every other night. I am in the states and use their web site, but I wouldn’t think they should be difficult to find. I hear your fear! 🌷
Would you please say more or give more info on prophylactic treatments/ideas for utis? I can't find the original comment but you mentioned antibiotics and antiseptics i thin - what do you mean by the latter? Thanks
Hi Bluebird, my urologist has me using a probiotic suppository every other night called Vagibiom. It is supposed to protect the urethra. It has probiotics and hyaluronic acid.
Thank you, sorry have only just seen your reply!
Hi Bluebird, I’ve been using the suppositories faithfully, though I’ve had a record number of UTIs. Grrr. I get the product through their site. (https://vagibiom.com/) If you are in the UK, you can likely use Amazon. Hope that helps.🌷
https://gavingiovannoni.substack.com/p/infection
Thank you
FSD has never been discussed in my annual reviews with my neurologist the question hasn't been asked by my male neurologists in the 9 years since my diagnosis. I would probably not react well to questions about it because I suffered from endometriosis when I was younger two laparoscopy's to evidence it in my medical notes!
Thanks for pointing out it could potentially be an issue for women and where to look for reliable information.
Your posts always make me think Prof G, keep up your informative posts :-)
As a female MSer with sexual function still mostly intact, with adaptations (at least for now), I've thought a fair bit about this. And, I am absolutely posting this here because I agree 100% that women don't talk about these things enough. My thought is, that MS already tries to steal enough from us, I'll do whatever it takes to ensure I get to keep enjoying this aspect of life!
As others have mentioned, there are overlapping issues re:women and sexual dysfunction. It's hard to separate MS-related sexual disfunction from peri/menopause, next from antidepressants for depression and/or nerve pain (most antidepressants impact sexual functioning or make it difficult/impossible to climax), bladder changes -- this is potentially a missed factor, if/when women deal with either bladder dysfunction or change, having to wear pantyliners/pads or catheterization can have an impact on one's self esteem relating to their "neither regions" so to speak. Next, as a women I distract easily, and having nerves in pain or constantly buzzing can certainly steal one's attention from thoughts of sex (women have a harder time compartmentalizing like men can). Fatigue. Loss of sensation can steal the pleasure from sex and make it a mechanical. Also, unfortunately apparently a not insignificant percent women *already* have a difficult time with sex, before MS. Fear of bladder infections from sex "honeymoon cystitis" and the effect this can have on MS. There's just a lot of factors.
One I wish I had known sooner was, that even if an antidepressant initially makes it difficult/impossible to enjoy sex or climax, after the body adjusts, with more time taken (sexual function on antidepressants for women can just delay and make it more difficult to enjoy sex), enjoyment can often be found again... though I've heard many women say rather that they never took time enough, or just gave up. Personally, I feel that sex and sexual function can only get better if there's a level of communication and comfort built around talking about it, exploring the issues, and finding ways around them. Life is too short to not muster courage get over early insecurities and talk about it. I also don't want to look back and wish I had. And so much about MS for me is not about what I "can't do", but instead about what I have to do differently. The more adaptable I am with MS in general, the better I tend to do with all things MS. There's so many things that can be tried to get around MS issues but it takes that willingness to adapt.
There's also a lot of things people can do differently. Persistence, more time, trial and error, and different meds regarding antidepressants. Toys can help with lack of sensation or the former. Cannabis or gabapentin actually helps with the distraction part and living in one's intended senses enough. Nerve pain meds to reduce the distraction part. Both partners always showering before sex for worries about "honeymoon cystitis" and/or bladder insecurity concerns. If low libido is a concern, there are plenty of woman-specific ways to help stoke the libido (romance novels). Counselling related to sex and intimacy (or counselling period if depression is a factor). Lubes for peri/menopausal women to help with dryness, plus HRT... just off the top of my head. Yes, there are things that can be done, no they won't get done if providers aren't making an effort, and patients also aren't. I think there needs to be a sex ed curriculum for MSers!
Here’s another publication with some articles on intimacy. There seems to be little out there available solely focussing on women, however, unless they are studies, that say, yes, we are all having issues. Eye roll. Problem is this one or the other may require ordering pamphlets from the states. (Another eye roll…) Hope maybe some of this helps.
https://msfocusmagazine.org/Magazine/Magazine-Items/Posted/Keeping-Romance-Alive
I thought my fsd was due to menopause. I've been on hrt that didn't help. Then i was given testosterone. Did not help either. Made me very stroppy quick tempered so I stopped.back on my gel and pill hrt. I feel that side of my life is over . Which has caused endless issues with my partner. He says he understands but his actions when hes frustrated prove otherwise. The end of out relationship is iminant
Hi Michelle, yes, I can relate to this. Not being the same responsive person in the department of sexual intimacy is extremely hard on relationships.🌷
The relationship part is so difficult to manage and deal with for any pwMS. I see the dynamic changing slowly everyday and the pressure it puts on those close to you. The transition to the carer relationship worries me most albeit with my best friend. Something you wouldn’t wish on that person. 🤝
Dear Jim_ie, My partner is not a physical carer. He cannot see me in that way. I have also lost old friends because I’m not that old me. It is indeed so difficult. My empathy and best to you.🌷
I have had MS for 30 years, probably 45 years, looking back. Not once, in all those years has my neurologist, MS nurse or urologist EVER asked about sex. In men, sexual dysfunction is more obvious, so I suspect that's why it's brought up straight away. UTIs is a very common reason to 'put off' sexual intimacy but I have never been offered prophylaxis.
I am someone who researches extensively, because my MS neurologists have admitted they nothing about RLS. I became an expert on that & now campaign to get dopaminergic drugs banned, iron infusions as first line treatment and opioids as second line treatment.
So I researched sexual dysfunction and sorted it myself. However, many others will not have the time or inclination. I suspect some older female patients may be embarrassed, but the subject should be fully discussed.
And menopause in older MS patients.
Thanks for bringing it up to raise awareness.
how can a neuro NOT know about RLS? I get that. I have RLS.. it is severe. It affects my entire body. It's maddening. They offered the ropinirole which I was already taking and then said there isnt much else to help. WHAT? I discovered pressure points and use a TENS unit on those points to relieve the RLS.. I am looking into acupuncture but cannot afford it at the moment. FSD has never been asked about. I guess at my age you are expected to be celibate. I am 65. But have had issues for years. I get crickets mostly when I bring it up. I can't help shaking my head over this. I was a 65 year old man i would be offered blue pills and whatever else because its a big deal when it happens to men.. But as a woman we are left to hang out to dry. We dont seem to matter on this issue. IDK. I dont feel that the sexes are treated the same way. on anything. I have never been taken seriously on so many issues.
RLS is not taught at ANY stage in medical training. The medical profession think it is either rare or insignificant. It affects 10% , 2% have it severely, every night. I became an expert because of total lack of knowledge by my neurologists and doctors. Ropinirole and Pramipexole are STILL first line treatment, despite the world experts advising how dangerous they are. They cause permanent damage to dopamine receptors.They cause severe worsening of the disease(augmentation) and most doctors increase the dose, making it even more unbearable.
It is terrifying.
I joined RLS-UK as a member, then as a trustee and spend my time researching and trying to force the UK medical Profession to teach it fully and using the Mayo Clinic Algorithm. So far, RCGPs & ABN have refused. Barts have been brilliant and one of their medical students has just done a PhD on lack of knowledge about RLS.
RLS UK is trying to stop Ropinirole,Pramipexole and Neupro patch being prescribed. Tragically, One of our members has just died after a fall trying to walk off severe augmentation. Her neurologist had no idea how to help her.
Treatment is surprisingly simple compared to other neurological diseases. RLS-UK are trying to educate doctors by ensuring RLS is taught at ALL stages in training and that dopamine drugs are NOT prescribed unless every other treatment has failed. We want iron infusions as routine first line treatment and low dose opioids to be trialled and licensed. NICE cks guidance is outdated. If
1. Ensure serum ferritin is above 100, preferably 200 ( iron infusions).
2. Stop/ replace exacerbating meds ( anti histamines/ anti depressants/ statins/ beta blockers/ PPI.
3. If that fails, prescribe pregabalin or gabapentin, at NIGHT only.
4. If 3 doesn't help, prescribe methadone or Buprenorphine. Long lasting opioids at low dose are very effective, especially when dopamine receptors have been damaged after years on DAs.
Hope this helps anyone with RLS.
Please join RLS-UK help forum on Health Unlocked. Ropinirole is causing severe worsening of your RLS. The D1 dopamine receptors become over stimulated and scream out for their hit of Ropinirole. This causes more severe,all over RLS.
The ONLY solution is a slow reduction by 0.25mg every 2 weeks. You may need a low dose opioid to settle withdrawal symptoms with each drop. There are so many research articles in this.
Once you are 4 weeks from the last dose drop, you start an alternative drug. Pregabalin is the usual choice, but low dose, long lasting opioids are often needed.
Raising brain iron helps 60%, but in MS, spinal lesions are the usual cause of RLS, so medication is needed.
Please do look at RLS-UK. The detailed information about augmentation and the Mayo Clinic Algorithm and a link to the Help Forum is all there. Usually, I would Always say listen to your doctors, but I guarantee they will not have been taught about RLS or have read the Mayo algorithm in full.
Take care.
I have never been asked by any health professionals about FSD. After the birth of my first child for over 2 years I had pain with vaginal sex. I asked my GP, who referred me to a gynaecologist who was only interested that I was wanting another child but not yet pregnant. She said the fertility stuff she could fix, the pain, tightness, no pleasure part nothing could be done and I would just have to deal with it.
The book “Come as You Are” by Emily Nagoski is very good. She is a sex educator and researcher, and she gets that it is so much more than just vaginal penetration. It is about pleasure. How your stress, environment, your feelings towards your body, worries about consequences ie STD, pregnancy or UTI, and previous experiences all affect your sexual pleasure at that time. That there is a brake and a gas pedal that affect your sexual pleasure and how to turn off the things hitting your brakes and how to turn ON the things pressing your gas. That everyone is different but made up of same parts, that no one is broken. 💕
Dr. Emily Nagoski has a 10 episode podcast “Come As You Are” available for free as well.
I wanted to grab a copy of the free brochure, but couldn't do so without having a UK address ...
Same for me too.
"How big is the problem?" Well, I certainly have nerve damage involving desire above all. But my question is: is it really such a big problem? I mean: as a 44y.o.-pwMS I have so many worrying things to think about that sex isn't probably at the top of the list...Plus kids, old parents and other family issues, a job, housekeeping, cooking, exercising, remembering about all the MS related stuff... and and and...