girlfriend with MS has no libido

[jmantra]

Hi All,

New to the forum and to MS. I am here posting about my g/f who was diagnosed about 10 years ago. The reason I am posting is because her libido is gone, and has been throughout the duration of the relationship. We are not sure if it's due to the MS itself or side effects from medications. She is on plethora of meds, and I am not sure what they all are. She has been to her GP about it for blood work, and they found a vitamin b12 deficiency( we are not sure if this is what the issue is or not), she was going to go in to discuss with the GP but he is off this week. She also tried to discuss with her neurologist and he kind of shrugged it off stating "maybe it will come back, maybe it won't" , very helpful I must say

Some background, I am 31, she is 30 just 1 month shy of 31. She has 1 child who has special needs plus she is taking care of a special needs brother in her small home so stress might have something to do with it as well. We have known each other for over a year, and have been "officially" dating for 6 months now, and we still haven't had sex. While we have been intimate in other ways (passionate kissing, cuddling, holding hands, touching her in certain ways), but the lack of sex is killing me. It should be noted that sex isn't as important to me as it is to other men. This could partly be due to my libido not being that high either due to being on an SSRI, but I still have one. I still masturbate, she has absolutely no desire to even masturbate.

I can't help but think that she has not had sex with me because she is not attracted, but she has shown me through her words and actions that she does indeed love me and is attracted to me.She always has to reassure and that puts a little bit of strain on our relationship. I am willing to be patient as like I said sex isn't as important to me as it is to other men (but it's still important), and I also have a disability of my own that can make it hard to find a partner (Autism Spectrum Disorder). I am also deeply in love with her.

So I guess I came here for some understanding and to see if there any other women who have experienced something similar, and what helped you if anything. I also wouldn't mind hearing from men too.

Thanks in advance.

[jimmylegs]

hi i used to have a much lower libido.

since i was diagnosed (at age 36) i have spent a lot of time and effort working to optimize my nutrient status. i have found that when i am working on zinc specifically, my libido increases noticeably.

oysters are particularly rich in zinc. there's a good reason for the old wives' tale about oysters being good aphrodesiacs

a serving (3oz) of oysters contains 77mg zinc (515% of DRI) and 16 mcg B12 (270% of DRI)
http://nutritiondata.self.com/facts/fin ... cts/4192/2

for comparison:
sardines have about half the b12 of oysters. and beef has about a quarter of the b12 you find in sardines.
sardines only have a couple mg of zinc, but beef has about 4mg per 4 oz serving.

beef http://www.whfoods.com/genpage.php?tnam ... e&dbid=141
sardines http://www.whfoods.com/genpage.php?tnam ... e&dbid=174

all that said, i am not a fan of oysters without ever having tried them.. working my way up to making an oyster/clam chowder. have the cans in the cupboard. just need to grit my teeth and get er done.

in the meantime - when i use a zinc supplement, i make sure i choose a product properly balanced with copper, and i also make sure that my diet has sufficient iron (the role of the clams in the chowder mentioned above). supplements have the potential to mess with other nutrient levels in a way that is far less likely when consuming whole food.

these articles may also interest you:
http://informahealthcare.com/doi/abs/10 ... 0902783747
http://www.nature.com/srep/2011/111103/ ... 00129.html

[lyndacarol]

Hi, jmantra, and welcome to ThisIsMS.

Although you have not specifically asked for our opinions, I will comment on your sentence, "She has been to her GP about it for blood work, and they found a vitamin B12 deficiency (we are not sure if this is what the issue is not)." I think you have found the root of the problem. B12 deficiency causes uro-genital nerve damage. In addition, oral birth control pills can interfere with B12 absorption, contributing further to a deficiency. If her GP is cooperative, he might be willing to prescribe a trial therapy of B12 (the methylcobalamin form is preferred over the cyanocobalamin form) – in the US, B12 injections done in doctors' offices are the cheaper, less-easily absorbed cyanocobalamin form. Methyl B12 is available through a compounding pharmacy and is easily self-administered subcutaneously (as a diabetic does with insulin). Methyl B12 can be found in some sublingual (under the tongue) tablets, as well.

By the way, some experts believe there is a connection between autism and vitamin B12 deficiency. Any person at any age can develop a B12 deficiency.

[jmantra]

hi i used to have a much lower libido.

since i was diagnosed (at age 36) i have spent a lot of time and effort working to optimize my nutrient status. i have found that when i am working on zinc specifically, my libido increases noticeably.

oysters are particularly rich in zinc. there's a good reason for the old wives' tale about oysters being good aphrodesiacs

a serving (3oz) of oysters contains 77mg zinc (515% of DRI) and 16 mcg B12 (270% of DRI)
http://nutritiondata.self.com/facts/fin ... cts/4192/2

for comparison:
sardines have about half the b12 of oysters. and beef has about a quarter of the b12 you find in sardines.
sardines only have a couple mg of zinc, but beef has about 4mg per 4 oz serving.

beef http://www.whfoods.com/genpage.php?tnam ... e&dbid=141
sardines http://www.whfoods.com/genpage.php?tnam ... e&dbid=174

all that said, i am not a fan of oysters without ever having tried them.. working my way up to making an oyster/clam chowder. have the cans in the cupboard. just need to grit my teeth and get er done.

in the meantime - when i use a zinc supplement, i make sure i choose a product properly balanced with copper, and i also make sure that my diet has sufficient iron (the role of the clams in the chowder mentioned above). supplements have the potential to mess with other nutrient levels in a way that is far less likely when consuming whole food.

these articles may also interest you:
http://informahealthcare.com/doi/abs/10 ... 0902783747
http://www.nature.com/srep/2011/111103/ ... 00129.html

Not sure if zinc is really the problem but thanks for the suggestion.

[jmantra]

Hi, jmantra, and welcome to ThisIsMS.

Although you have not specifically asked for our opinions, I will comment on your sentence, "She has been to her GP about it for blood work, and they found a vitamin B12 deficiency (we are not sure if this is what the issue is not)." I think you have found the root of the problem. B12 deficiency causes uro-genital nerve damage. In addition, oral birth control pills can interfere with B12 absorption, contributing further to a deficiency. If her GP is cooperative, he might be willing to prescribe a trial therapy of B12 (the methylcobalamin form is preferred over the cyanocobalamin form) – in the US, B12 injections done in doctors' offices are the cheaper, less-easily absorbed cyanocobalamin form. Methyl B12 is available through a compounding pharmacy and is easily self-administered subcutaneously (as a diabetic does with insulin). Methyl B12 can be found in some sublingual (under the tongue) tablets, as well.

By the way, some experts believe there is a connection between autism and vitamin B12 deficiency. Any person at any age can develop a B12 deficiency.

Thank you this is a very informative post. Do you know what kinds of other problems a vitamin b12 deficiency can cause? Also will the injections help bring her sex drive back?

You should also know she is not on oral contraceptives, she is on an IUD, a copper one I believe.

[jimmylegs]

Not sure if zinc is really the problem but thanks for the suggestion.

you can easily test whether or not it is involved, with bloodwork. the 'normal' serum zinc range at my hospital is 11.5-18.5 umol/L. average ms serum zinc is low to mid teens. healthy controls average high normal serum zinc, around 18. the conversion factor to ug/mL is 0.153.

before i was diagnosed i was b12 deficient - my status was so bad, the tests couldn't detect it. correcting my b12 status made no noticeable difference to my libido whatsoever.

when i was actually diagnosed, i was numb to the shoulders which obviously affected sensory function. i had already been frantically taking b12 when my dx episode occurred, and by itself, it wouldn't touch the problem. i was only able to regain sensation to the degree i have it today by changing my basic diet and adding multivitamins, high dose vit E, and high dose vit b complex.

years after my b12 situation was corrected, i figured out that i also had an ongoing zinc problem. it was and is definitely a factor in my libido (and is also critical for human fertility. with a simple zinc recommendation i helped my old supervisor get pregnant in 6 weeks after she and her husband had been trying unsuccessfully for a year and a half).

"Patients receiving zinc had an improvement in potency, libido, and frequency of intercourse not found in the placebo group."
http://annals.org/article.aspx?articleid=695863

[lyndacarol]

Do you know what kinds of other problems a vitamin b12 deficiency can cause? Also will the injections help bring her sex drive back?

"Everything You Want Your Doctor to Know about Vitamin B12"



I highly recommend this 50-minute documentary featuring Sally Pacholok, RN, BSN, & her husband Jeffrey Stuart, D.O. (authors of the book, Could It Be B12? An Epidemic of Misdiagnoses); Lawrence Solomon, M.D., hematologist with Yale Medical School; Ralph Green, M.D., hematologist at UC Davis; and Donald Jacobsen, PhD, at the Cleveland Clinic (Homocysteine Research Lab).

Many "red flags" are mentioned in the video; in addition, you will see the following lists:

Signs and Symptoms of B12 Deficiency:
Tingling/Numbness
Sore Mouth or Tongue
Fatigue
Anxiety
Irritability
Depression
Weakness
Abnormal Gait
Mental Impairment
Visual Disturbances
Migraine
Orthostatic Intolerance
Chest Pain
Tachycardia
Difficulty Breathing
Edema
Elevated Homocysteine
Elevated MMA
Stomach and G.I. Problems
Blood Abnormalities
Neurological Lesions
Limb Movement
Psychosis
Thoughts of Suicide

Cardinal Signs of Anemia Due to Vitamin B12 Deficiency:
Fatigue
Shortness of breath
Dizziness
Pale/yellowish skin
Swollen tongue that may appear dark red
Weight loss
Diarrhea
Numbness or tingling in your hands and legs
Muscle weakness
Irritability
Unsteady movements
Mental confusion or forgetfulness

If a B12 deficiency is found and treated early, most symptoms are reversible.

Jimmylegs is right: a person can have more than one problem/deficiency at the same time and all these possibilities should be investigated.

[jimmylegs]

tried to find a b12 supplementation study that evaluated libido before and after - no luck so far.

[jmantra]

I asked her about her zinc levels and she said they were fine, If not vitamin b12 what else could it be?

[euphoniaa]

Hi All,

New to the forum and to MS. I am here posting about my g/f who was diagnosed about 10 years ago. The reason I am posting is because her libido is gone, and has been throughout the duration of the relationship. We are not sure if it's due to the MS itself or side effects from medications. She is on plethora of meds, and I am not sure what they all are.

She has been to her GP about it for blood work, and they found a vitamin b12 deficiency( we are not sure if this is what the issue is or not), she was going to go in to discuss with the GP but he is off this week. She also tried to discuss with her neurologist and he kind of shrugged it off stating "maybe it will come back, maybe it won't" , very helpful I must say

Hi jmantra,

I'm sorry that your girlfriend's libido has become an issue in your relationship. Yeah, maybe a vitamin/mineral issue is at play here. Or not. As you can see, that can be complicated to figure out detail by detail. Plus, even if supplementation is cheap, testing is expensive and overdoing them can cause just as many problems -- as it did in my case. And it cost me almost $1,000 to get basic bloodwork this year (will take me months to pay it off!).

But the most obvious issue is that she is "on a plethora of meds," which, considering that she has MS, means some may be pretty powerful, bringing also a 'plethora' of powerful side effects!

The very first thing I would suggest is to come up with a list of her meds, since you can easily find their side effects listed online. You likely can find even their entire "Prescribing Information" packet. Low libido is very often a side effect of prescription meds (as you say that you have experienced as well), and she could possibly adjust her meds to add to her quality of life. Working with her doctors, a dosage may be lowered, a med combination changed, that will make a ton of difference.

Plus, the stress of her MS and her life in general is likely to be having an effect on her libido as well, so counseling may be a real help to her. I've been going through a couple years of the worst stress of my life, culminating in loss of my job (layoff), my insurance, etc. My whole personality changed and I couldn't get rid of the anger. Counseling has been a great help to bring me back to my normal life. Without drugs. Or supplements... in the past, taking supplements has caused me worse problems than MS has ever caused me.

I think your initial assessment in your original post is likely correct - "a plethora of meds" and the "stress" of her family situation could be the main causes of low libido. And having MS is not helping at all. However, it's not affecting my libido much, even at the age of 64 with at least 40 years of MS behind me. But then I don't take many meds or supplements either.

If you list her meds we can help you find the side effects here. Wishing you and your girlfriend the best toward a healthier & happier life together!

[jimmylegs]

meds and stress can *definitely* affect nutrient levels. that is well documented in the literature, and in product info as you say, e. for instance oral contraceptives (which i recall are not in the mix in this particular scenario) lower zinc status. (interestingly, high copper levels could be expected to impair zinc status, and vice versa).

sorry to hear testing is pricey where you are, e. it's largely covered by public health where i live.

for ppl in the states, there are some reasonably inexpensive options also, eg
serum magnesium $20 http://www.lef.org/vitamins-supplements ... Blood-Test
serum zinc $40 http://www.lef.org/vitamins-supplements ... Blood-Test
i have noticed testing is more expensive in the UK for some reason.

one very important thing to know regarding those two tests above in particular, is that treatable deficiency occurs within the normal range. the ranges are in need of updates, and that's also known and published in the scientific literature by a number of authors. knowing target levels when you go in, and getting your own copy of results, is key.

where possible, in the long term diet is the best approach for looking after nutrition status. that said, i tried for years to correct my typical ms low uric acid with food, to no avail. only after reading enough to suspect zinc's role, followed by having my first zinc test confirming serious deficiency, and then following my doctor's instructions (100mg supplemental zinc per day for one month) was i able to resolve that particular low ua problem. at first i didn't obey my doctor because 100mg of zinc made me feel sick to my stomach. when i reported that problem, she said 'take 50 twice a day then. with food'. problem solved.

other than daily multivitamins, which do not contain therapeutic amounts of anything, supplements are certainly not an approach to be taken lightly, by any means. for example, i've had bad experiences taking high dose vit D3 without balancing the intake properly with magnesium (which i was taking daily but not at the right time or in the right amounts!).

drugs that affect libido: http://time.com/23982/low-libido-11-dru ... sex-drive/
also https://my.clevelandclinic.org/health/d ... l_Function

guide to the nutritional impacts of over the counter and prescription meds
http://www.healthcentral.com/PeoplesPha ... trient.pdf

Drug-Nutrient Interactions: A Review
http://journals.lww.com/aacnadvancedcri ... iew.9.aspx
"It is vital that healthcare providers are familiar with drug-nutrient interactions and continue to educate themselves and their patients to optimize the effectiveness and minimize the toxicities of medications."