Periods, Birth Control and Spinal Cord Injury

I had my period the day of my accident. I remember laying in the trauma room asking little to no questions about my injury but telling every single nurse who would listen that I had a tampon in. I didn’t stop until I was sure they had taken it out – it seemed unnecessary to add toxic shock syndrome to my list of current complications. Looking back, it was probably one small thing I felt I had control over. But, as all women know, we don’t really have control over our periods.

The menstrual bleeding stopped as soon as I was injured. I imagine my body had more important things to focus on – such as the internal bleeding. Once I was assured that my tampon had been removed, I all but forgot about my period for a few weeks as I also had more important things to focus on. I was at rehab when I finally asked what would happen with menstruation. I was told it would most likely return (lame) but that it would probably take six months to one year. Finally, there was a perk to this paralysis life – a period break!

But then, almost two months to the day after my accident, my period came back. Feeling a little bit cheated out of my paralysis perk, I began to wrap my mind around the effects of my spinal cord injury:

Bladder – broken
Bowels – frustrating
Sexual Function – altered
Legs – immobile
Excessive bleeding from my uterus once a month – business as usual

To recap, that’s four aspects of myself I would love to have back and one aspect that would be nice to get rid of. SCI is not out to make friends. However, I don’t want to be completely misleading. The fact that the female reproductive system can still function after SCI is an amazing thing for women who hope to become pregnant. But whether or not someone wants to become pregnant, I’ve never met a woman who enjoys her period and we are often looking for ways to control them better.

With the average girl getting her first period between the ages of 12 and 13, we women learn from a young age how to manage puberty’s finest gift. Except, managing your period and reproductive system after a spinal cord injury can be much more difficult and complicated. And finding information about it all can be even more challenging.

That being said, I have learned to deal with my cycle since my SCI mostly on my own. I was happy to learn early on that someone with a spinal cord injury can still use whichever products they want to when dealing with the bleeding. Without sensation, we run the risk of placing a product incorrectly which can be frustrating (and, let’s face it, messy), but I at least have gotten the hang of it. And, as I’m sure you can imagine, women with limited hand function have greater difficulty using certain hygiene products and have to find the method that works for them. Personally, I use tampons. But because I cannot sense if something has leaked, I also wear Thinx period underwear as backup.

As the months – and the periods – have gone on, my cycle has become increasingly more difficult to deal with. Sensation in my uterus seems to have mostly returned, with cramps becoming more and more painful each month. It seems slightly unfair that I can feel cramps low down in my uterus where I have no physical sensation on the outside but, I digress. PMS, along with its usual symptoms, also now affects the functioning in my bladder and bowels as well as increases my leg spasticity and neuropathic pain (the pain I feel below my level of injury). And now I’ve gotten to a point where I’m anemic and my periods have become so heavy that I need to take measures to manage my cycle. This is where it gets tricky.

Hormonal birth control is the most common method used in reducing the bleeding women experience during their menstrual cycle. The problem? Using hormonal birth control increases your risk of developing blood clots. Since women living with a spinal cord injury already have an increased risk of developing blood clots, it isn’t usually recommended to use hormonal birth control. Essentially, our options for birth control and period control are limited.

This also means that women with SCI who do not want to get pregnant, often rely on their partners to use condoms. Because condoms are not hormonal and do not require proper placement like a diaphragm, it is the safest and most reliable form of birth control when it is the female in a relationship who has a spinal cord injury. Unfortunately, this takes the power of birth control away from the woman which kind of feels like a setback in women’s rights.

So where does that leave me, my anemia and my nightmarish periods? After a lot of consideration and conversations with my healthcare team, I have decided to get a hormonal IUD. Unlike the birth control pill, the IUD releases the hormones directly into the uterus which lowers the blood clot risk slightly from an oral contraceptive. There is also a concern with paralyzed women that the limited sensation in the uterus will pose a problem if the IUD becomes displaced. The discomfort most women would feel when this happens may not be obvious to a woman with paralysis. But, I feel confident that I have good sensation in my uterus and I have zero qualms about checking daily to make sure the string is still where it should be.

Whether you have a spinal cord injury or not, periods are not something anyone looks forward to (except maybe in those months with a pregnancy scare). I think every woman I know is always searching out ways to make it less of a struggle. I’m hoping for the best with my IUD but won’t have any qualms about having it removed if it isn’t working for me. If only I could barter with my SCI – give me bladder control and you can have my menstrual cycle. I’d make that deal.

*Remember to talk to your medical practitioner to help you make the decision that is best for you and your body.