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Epilepsy & Periods

I have a gynaecology appointment tomorrow and it’s suddenly dawned on me, I could find out I might have another condition.

I’ve suffered from seriously painful periods for years, but I’ve always just dealt with them. Within the Black community, as women we always do; many of us have severe heavy periods, that come with paralysing back pain and cramps, and because generations of women before us suffered we suffer too. Furthermore, as teenagers, visits to GPs are not even rewarded with a prescription for anything stronger than paracetamol. One of my best friends waited until her twenties to go and see a GP about her heavy periods and just suffered in silence through her teens.

As soon as I turned 18, I went on the contraceptive pill – not only because I had become sexually active, but also to help battle my period demon. And it worked – the combined pill made my periods lighter, however it made my depression worse. Thankfully, I was switched over to Cerazette, a progestogen-only pill, but this took years of negotiation with my GP, while simultaneous back-and-forthing regarding my depression and undiagnosed Epilepsy. Finally not having a period was a weight off my shoulders and when I went travelling, I changed over to an implant to ensure that I could continue to stay period free while on my travels.

The problem with Epilepsy is AEDs (anti-epileptic drugs) is that some of them conflict with contraceptives which contain hormones. Unfortunately, Keppra conflicted with my implant and I had to have it removed. I now have an IUD (non-hormone) coil, which means that I have horribly painful periods again – including sleepless nights. This provoked me to go back to the GP and demand a referral to gynaecology, because I could no longer live in agony. It took a lot of persuasion, but eventually I got a referral, however can you imagine a GP questioning a thirty year old (at the time I was still thirty) woman about her own body? And I don’t mean questioning in the sense of a tick box of symptoms, but gaslighting, to deter us from having to make these costly referrals.

There was an article in Black Ballad over the summer, however I can no longer find it regarding Black women and periods. We are made to suffer, because we’re perceived by white clinicians as strong and robust, therefore when we come into their rooms with our ailments, they don’t believe us, which has detrimental impacts upon our bodies as well as our mental health.

As somebody with Epilepsy, I shouldn’t have been gaslighted.

As somebody with Epilepsy, I shouldn’t have had to wait since FEBRUARY to have my gynaecological issues sorted out, when they have an impact on my seizures.

I could have another condition.

As a young Black woman, I shouldn’t be made to feel ashamed to ask for help to manage them.



P.S. I actually thought this was really funny considering how much I hate periods:

Life on Your Period(Image source)



I’m Cece Alexandra and I have Epilepsy. Since being diagnosed, my life has changed significantly. After studying and teaching Humanities and Literature for all of my adult life, I was bullied and lost my job a month before qualifying to become an English Teacher. Once you fail the Teacher Training course in England, you cannot ever retrain; I then became too sick to work because of my Epilepsy. I am now currently studying an MSc in Mental Health Psychology with the University of Liverpool. My disability provokes me into raising awareness for invisible disabilities, which I also actively partake in with Epilepsy Action. Part of that awareness is to help fight against invisible disability discrimination - I believe that this behaviour is not cognitively unconscious; modern society is actively partaking in a hierarchy of disabilities and I believe that there is not enough psychological research to prove this. I am also clinically interested in Cultural Psychology - particularly Collectivist Culture, and wish to pursue this further in my academic career.

6 thoughts on “Epilepsy & Periods

  1. Hi Cece Alex. This is an issue for people with bipolar disorder, too, since people with bipolar disorder take some of the same anticonvulsant medications as people with epilepsy. Coincidentally, some anticonvulsants are bipolar moodstabilizers. I take Tegretol XR and that reduces the effectiveness of hormonal birth control.

    My gynecologist also suggested the copper IUD. I had it inserted a few years ago. Unfortunately, it became misaligned, and I had to have a second one put in. Then I developed iron deficiency anemia, because my periods were so extremely heavy. Definitely consider asking for an iron level test if your periods are extremely heavy. I ended up taking a prescription iron supplement and that helped.

    My worst cramps were when I was a teen, too. They would get so bad that I’d vomit. Later in my life they really eased up, but when I had the IUD the pain returned, though not as bad as in my teens.

    My second IUD became attached to my uterus, so they had to take that out, too. I’m at an age when the best choices for birth control would be my husband getting a vasectomy or me getting a tuba ligation. I never kids, and will likely not have anymore. My husband is reluctant to get a vasectomy, so we have to use condoms. Boo hiss!

    1. Oh my goodness, I’m so sorry to hear about your troubles with IUDs 😦
      Periods really do suck. (And so do condoms LOL) I used to vomit with my periods (I can’t remember if I put that in my post or not) and get awful stomach issues. I still have this vivid memory of being on this cramped bus while on my period, in the middle of the Summer and needing to throw up and couldn’t get off the bus and I had to throw up in my mouth. Gross.

      So far I’ve been ok with the copper coil. I’ve had it for almost 2 weeks now. I haven’t had time to blog about it. The only issue was that they didn’t give me any pain relief while inserting it and I nearly passed out from the pain 😦
      My legs were still shaking 12 hours later from the shock.

      Thanks for the advice about the blood test by the way. I don’t understand why doctors don’t think of this stuff. I’ve been heavily bleeding for like three years :/ AND constantly tired. I know I’m on a lot of drugs but guys come on!

      And thanks so much for reading by the way xoxo

      1. My insertion was very painful, too. The first time I even let out a small scream, then my gyn said “It’s not that bad”, but I was like “How do you know!” I think it is more painful for women who’ve never had babies.

  2. I’m on Keppra (albeit a low dose) and am taking Cilest – my periods have been fine and hasn’t interacted with the Keppra at all! So sorry you have to go through this – the worry of having a seizure is bad enough let alone the horrific period pains ❤️

    1. Thanks hun ❤ Hopefully I'll be out of the woods now with copper coil. Two weeks, no period woooooooooooooooooooooooooooooooooo! They inserted it literally the day I came on, lifesavers! xoxo

  3. Fellow epileptic, mental health advocate / long term mental illness sufferer (is that how I should be calling myself?) and woman with periods that are comparable to a demon baby being born. Additionally, I come from a highly religious and conservative family, so equally I wasn’t even allowed discuss the subject of contraception until I was much older.

    Firstly, I just want to thank you for writing about all your troubles. I am so sorry you have to go through all that, but its so nice to see someone else go through similar things and still stay so strong.

    I also wanted to suggest if you’d consider different epilepsy meds? The reason I suggest this is because I’m on Lamictal and I can use the Skyla coil with hormones in them, which has really reduced my periods! AEDs have really fucked up my mental wellbeing, and lamictal is no different unfortunately, but its apparently much better for women because of its limited response to hormones 🙂

    Anyway, thank you so much again for posting this. I don’t know anyone else with epilepsy as it isn’t really discussed in Ireland because of the stigma etc, let alone someone so open about periods, mental health and epilpsy combined!! So thank you ❤

    Hope you're feeling better,

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