MS and Menstrual Cycles
Do periods affect MS? Well for me it really does. I always know when my period is due – not through tracking, but because of how my MS symptoms intensify. Each month about two days before my period starts, my legs and arms become so heavy, my balance is off, the fatigue is at the next level and the spasticity in my legs become so painful and tight. Once my period begins and lasts for about three days, these MS symptoms typically return to their usual level. I often wondered if this was all in my mind, but I spoke to my neurologist about it and turns out that I am not crazy. We know that heat in a lot of people can cause havoc to our MS symptoms. Like heat sensitivity issues, during our periods our core body temperature increases. Even the slightest increase can cause our already damaged nerves to flare up symptoms temporarily.
Pregnancy and MS
MS is most commonly diagnosed in women between the ages of 20-40. These are often women’s peak years for getting pregnant. MS does not affect fertility but a lot of disease modifying treatments that we take can have negative effects on the fetus. What does this mean? It means that we can get pregnant but often must plan it. I’m on a drug called Gilenya and if I wanted to become pregnant, it is recommended that I come off the drug for 12 weeks before trying for a baby. MS itself won’t stop anyone from getting pregnant, it just means we’ve to plan a bit more due to treatments and medications.
Intimacy and MS
Following the discussion on pregnancy, I want to address another important topic: sexual intimacy. This topic seems to be taboo at times, but I feel it’s so important. Sex and intimacy is a normal part of life. Being intimate doesn’t stop or have to stop just because you have a disability. For me and many others our libido decreases massively. When you live with MS, you can suffer with chronic pain, fatigue etc. and sometimes the thought of sex alone is exhausting. Another problem I have is vaginal dryness and reaching orgasm. It wasn’t until I met others with MS that I realised I wasn’t alone in feeling this way.
Being Heard in Healthcare
I’ve discovered that it’s not uncommon for women to experience different treatment in the healthcare system. This is not me having a go at men or anything of the sort. I suffer with chronic nerve pain, mainly occipital and trigeminal neuralgia. It took 3 months of daily occipital neuralgia pain to get any sort of treatment for it. I felt like I was going crazy because I was just being told that I was emotional, stressed, and sensitive. It wasn’t just one medical professional who spoke to me this way. For years Id attended my GP with lots of strange neurological symptoms including a numb foot for three months and still everything was put down as something minor. Other women I’ve spoken to have felt the same that they had been made out to be dramatic when really, they were on the ball.
Societal Expectations and MS
I feel that in society, there are a lot of expectations placed on both women and men. When you live with a chronic illness like MS it can be really tough when your life is questioned by others who do not have a chronic illness. Questions thrown at women usually consist of:
1. Are you not married yet?
2. No sign of a baby yet?
3. What job are you doing now?
4. Are you still renting?
Success isn’t just about marriage, children, careers, owning your own house etc. You don’t need to have any of those things to be successful. You don’t have to be an inspiration or what people depict as an inspiration. Getting up, having a shower can be all the success you need for your day.
Life can be hard enough as it is for most people and getting up, showing up and facing life every day when you have a disability is one of the most inspiring and successful stories that there is. So be kind to others, you never know what challenges they are facing.
Comments
Thank you for your honesty Christina
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