Menstrual health – a journey
Pausing fully long enough to share my story
Post 1 of a 3 pert series.
Earlier this year, I was interviewed on the aspect of my journey which centres around hormonal health. Though menstrual migraine is only one part of the spectrum of the disease I’ve been living with, this interview relates only to this type of attack. Known as the most severe and disabling, the most challenging to overcome and the most medication resistant.
I was to share my menstrual health story in a held and protected space with Vicki Hodges, a Certified Emotional Wellbeing Coach, Menstrual Health & Menopause Specialist.
Vicki is the Founder of Pausefully - Therapies to support mind-body connection for healthier, happier menstrual and menopausal wellbeing. She wants to give space for women to share their story and started by asking me to share mine.
Where to start?
No one taught me that my menstrual cycle was anything to cherish or that is was a sacred and cleansing act. I always saw periods as an inconvenience, something to be ignored. I didn’t even bother to track my menstrual cycle. I now wonder if part of the reason for this is that they haven’t ever fit the standard 28-day cycle I was led to believe every woman had.
During my early 20’s were when the real issues started for me. I was taking the combination pill when menstrual migraine began. I would break for what I now understand is winter week and each day the onset of migraine began in the morning and continued throughout the day. I made it through work and would get home and go straight to bed to be in a dark room and sleep it off. The next day would continue on again until the break in the pill was over and would start again.
I’d already been speaking to one doctor after another about migraine for a few years by this time. When I had my blood pressure checked and pill review every 6 months I would mention the migraine. Each time I was told it had nothing to do with the pill and – as with any other visit – the migraine I was talking about was dismissed in its entirety.
Eventually (and at a point where I could take no more), I insisted the contraception be changed. Around mid-20’s I was put on the progesterone only pill. Menstrual migraine stopped immediately. When it later became common knowledge that the combination pill should never be taken by those who live with migraine disease at no point was this brought up with me at the doctors – despite many subsequent visits in relation to migraine and the records of numerous visits.
Several years later I had the contraceptive implant inserted. I was so against having children I did not want to get pregnant and was relieved not to have to rely on taking a pill at a set time every day. All was going well until my second round of the implant 3 years later, now early 30’s.
Menstrual migraine began again. On and around my period, migraine attacks would occur. I repeated the same process as with before and was told over and over again at the doctors that it couldn’t possibly be the implant. Though I’d lived with undiagnosed migraine for 15 years by this point, this is the first time I connected with just how much it was affecting my quality of life.
After repeating visits on the same topic, again, I eventually insisted they take the implant out. I still didn’t want to get pregnant and was prepared to avoid it any cost. At not point did I ever give any consideration (or researched or understood) what the consequences of such decisions could mean for me. Nor how they could implicate my health. After several different types of contraceptive pill and 2 implants, I moved on to the coil.
Shortly after, my life turned to sh*t and I experienced 12 major life-changing events in quick succession. I found myself living under extreme pressure and stress and if I thought that my quality of life was affected before this period in my life, I had no idea what was to come next.
In 2015, attacks began to erupt for a 24-hour period every fortnight. Pain, as it always had been, severe. Puking, as it had long-since been, multiple times. It was the duration that was increasing from many hours of the day/night to the full 24. This (to me) was the beginning of the end and the increase started here and continued both in duration and frequency until I became completely disabled by the illness in 2018.
It was only around this time that I was medically diagnosed (following misdiagnosis) and permitted to see a specialist. The neurologist confirmed that I was living with the worlds 2nd most disabling disease a person could live with – correction, his training and studies were out of date, he informed me it was 6th (a statistic that had changed a couple of years earlier).
When I asked what dietary changes I could make to improve the condition, he replied “I wouldn’t bother”.
When I asked what support was available to me, his response was “there is none”.
As devastating as this was at the time, in hindsight it was a blessing in disguise. For me to be able to identify a need of this nature and ask for help was a big deal. To then receive crystal clear confirmation that my needs were not going to be met meant I could make an informed decision about what to do next.
Due to receiving counselling for 18 months (following a breakdown in 2016) I had enough mental strength to realise that under the care of the NHS I was becoming sicker. That if they could not help me meet the needs that, by this time I was beyond desperate for, then what was the point in dragging myself in to see them? Especially when only to leave with another migraine attack.
My lifelong belief had been that they were there to help and support me. That a specialist would help me get to the root cause of the illness so that I could get better. I took along a diary only to discover there was no real interest in this. Luckily, I didn’t believe the neurologist when he told me that it was his belief I was incurable. I later came to realise that this is a belief that many patients go on to embody. That the best hope we can have is that you can control, manage and fix the illness.
This simply doesn’t make sense to me and I’m yet to see any statistics that support that this approach leads to improved or even maintained health. What I tend to see in the chronic illness community most often is one diagnosis leading to another. Then to another and on to another.
Disability by chronic illness is increasing. This needn’t be the case.
We can take time to understand that the healthcare service is there for our survival.
It’s function is to treat disease.
It is not there to create wellness.
We can understand the difference and empower ourselves to recognise there are other choices.
We can pursue other avenues, explore other options.
Related posts you might like to read:
Menstrual Migraine - Your Questions Answered
Space for reflection
My greatest passion is to help others who live with chronic illness find their voice. Part of the work I do around this is to ask thought-provoking questions. Choose one or two below and let’s chat about what’s come up for you in the comments?
How do you feel about your menstrual health?
What has been your experience of contraceptive medication? What impact has this had on your health?
What changes have you noticed to your cycle over time?
Please share an aspect of your own journey you’d like to be witnessed.
Behind the paywall: I’ll bring these prompts to our Healing Through Writing space in the morning for those of you who would like to journal your own reflections in a brave and held space. Join us? Here’s what to expect when you do.
I'm so sorry that you had to go through that Amber. I was put on the pill when I was a teenager because of heavy bleeding and severe menstrual cramps. It did help with those symptoms, but I didn't feel right when I was taking it and I also had bad headaches. After a year, I stopped taking it. Thank you for sharing your experiences with all of us. xx
My menstrual cycle is the first thing that went wrong when my hormones were in whack after they were ruined from strenuous training and keto vegan diet. And then some autoimmune symptoms popped up. Now I got my cycle back, I cherish it as a regular cycle is a hallmark of health.