Kathryn’s PCOS and PMDD story
“But the hardest part has to be when others dismiss my experience as “just that time of the month” or “just something all women experience.”
Kathryn was 11 and a half years old when her period started.
'I wish I'd had my period later in life. I feel like I was too young and inexperienced at the time and I didn't know what it was, and even though my mum tried to explain it to me, she did a poor job of it.’
Kathryn, who was diagnosed with Alström syndrome when she was 7 and attended a special school for visually impaired children, was the first in her class to get her period, and right from the start they were heavy, painful, and very irregular.
'All through school I had to carry period products with me at all times. I missed out on things like swimming practice because tampons were too painful for me to use. In general, when I had my period I was just feeling very anxious and uncomfortable.'
At 20 Kathryn started university, and at this point, her periods started to become unbearable: 'My periods were really out of control. They were extremely heavy and painful, I had severe breast pain and I found it hard to get out of bed or study. I didn't really know how to survive. I was sure, there was something wrong with me so I started looking for answers.'
Kathryn started doing some research and came across a condition called PCOS. This seemed to line up with some of her symptoms and eventually, she approached her GP asking for some hormonal testing.
Finding some answers
'Approaching my GP was not easy as I was embarrassed and confused at the time. But, I wanted an answer to all my issues. I had acne, greasy hair, irregular, heavy periods, weight gain, and hair growth in odd places. When my test results came back my GP told me that I had PCOS as my androgen levels were above the normal range. It was a relief to finally, after so many years, have some answers as to what was going on in my body. I started experimenting with hair removal products like shaving and got myself to the gym to try and lose weight. Now I felt like I could do something about it rather than just sitting, wondering, and waiting it out.'
But Kathryn didn't just stop there. She focused her master's dissertation on PCOS: 'I wanted to gain more knowledge on PCOS for my own sake, but also to help raise awareness for others. I was also interested in finding out if men could have PCOS (note: they can) and if they have similar symptoms to women. I was curious as to how it affected other women and whether I was the only one who experienced this condition in this way.'
A very helpful journal (and a new diagnosis)
And then, Kathryn, who had struggled with depression and anxiety for years, started noticing that it seemed to get worse around her period. She'd been keeping a journal, monitoring her symptoms for almost a decade, and looking over her notes, she started to see a definite pattern. She once again started doing her own research and when she started reading about PMDD something seemed to click. Kathryn talked to her GP about her suspicion and her GP agreed that in all likelihood, Kathryn, as well as PCOS suffered from PMDD.
In order to keep her symptoms in check, Kathryn has tried a whole host of treatments. For the past 11 years, she's been using a contraceptive implant which in the main has had a positive effect, if she doesn't count the fact that when she had her first implant fitted, it caused nerve damage in her left hand, which is particularly troubling when you, like Kathryn, use your hands for reading braille and working a guide dog. In 2016, she tried to have a coil fitted, but unfortunately, it migrated to her fallopian tube, an extremely rare occurrence, and she had to have it surgically removed.
Alongside the implant, Kathryn now also manages her symptoms with a contraceptive injection, and she recently started using a replacement oestrogen vaginal ring as well.
‘Managing all of my various treatments gets quite hard. Every three months I have to get an appointment for my injections and ring replacement and every three years I need to have the implant changed. If I accidentally leave it too long between my injections, I bleed for six weeks which leads to iron deficiency and thrush. This is something I am constantly battling with. I use Fluxotine to help with my PMDD which I take daily all month round.’
“Just that time of the month”
'But the hardest part has to be when others dismiss my experience as "just that time of the month" or "just something all women experience". I have had this, particularly from my mum. Luckily, I have some very supportive friends who understand and take it seriously. I like to know that, I can go to people for a moan or vent and that they will understand and listen without judging me. At the time around my period, I do feel particularly vulnerable and sensitive as well as being very hypervigilant and on edge. I feel out of control and I can snap, be selfish and rude, or just withdraw from others. I struggle with communicating as my emotions are particularly strong at this time and very conflicting.
'I may only be interested in myself for a few weeks. Then this clears and I have a few great weeks where I recover and feel bad for making people put up with me. But it's not something I can help. But I do try to limit its impact on others, so I end up spending more time alone. I sleep more and eat more too. I crave sugary things, carbs, and chocolate. Sometimes all I want is my bed and my dog.
'PMDD has also made working really difficult. I'll withdraw, be selfish, not be myself, be tearful, not interact properly and struggle with concentrating. I've struggled with my anxiety, which would be made worse by all the noise around me and I would become very quiet and depressed. The pain caused by the PCOS would also really get to me at work and I would spend more time going to the toilet too. I felt very embarrassed and like I wanted to hide away.'
The search for relief
'I did take a Decapeptyl injection for 10 months and it was the best thing I ever did for myself. The only side effects I had from it were the usual ones of hot flushes, cold sweats, headaches, and hair loss. But everything was great! I was in much less pain physically and I just felt confident and happy and my moods were stable. It felt like I had hit a breakthrough moment. Unfortunately, I wasn't able to continue with the injections due to the risk of bone density loss, and because I wasn't able to take HRT because of my heart issues, due to Alström syndrome, it just wasn't a good long-term solution. This was devastating.'
'Living with all of these complicated conditions means that I have to take a lot of medication, be very organised, and keep to my routines and schedules. I have technology to help me and I have friends who are there to support me and listen which is what I need. My parents are there for practical help reminding me to order medication and giving me advice.
'I wanted to become a mum, not at least so my parents could have a grandchild. But the impact of going through pregnancy would be too much on my body and now I've reached a point where I've decided that the best way forward in life is a hysterectomy. I need relief from the weight of living with PMDD and PCOS.
I am just totally fed up.'
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