PCOS to Early Menopause
PCOS diagnosis, put on combined oral contraceptive pill
Took combined contraceptive pill for 18 years
Had migraine with aura, taken off combined oral contraceptive pill
Normal medical tests but started experiencing the most debilitating symptoms of my life
June 2020 I felt the strongest and fittest I had ever felt. Months of lockdown and working from home, meant that I had time in my week to be physically active. Typically, I ran 2-3 times per week, completed strength training 2-3 times per week and easily surpassed my 10,000-step target with daily walks. When lockdown restrictions eased, I was able to meet friends for road rides. I considered 40-mile road rides around the Snowdonia National Park a great way to spend the day.
In early July whilst mountain biking with friends, a migraine with aura hit me, this was only the 2nd migraine I had ever had. The previous one (a year before) came and went and so I fully expected to be able to ride (not literally) this one out too!
Somewhere in my mind was some stored information that I had previously read, women who get migraines with aura should not take the combined oral contraceptive pill. As this was now my second migraine with aura, I thought it was probably a good idea to mention this to my GP. The following day, I spoke to my GP and she agreed that migraine with aura was a contraindication to the combined pill and took me off of it with immediate effect.
That week I didn’t feel great, a bit headachey, tired and just not myself but I still managed to go for two easy jogs and complete a strength workout. The following week I still didn’t feel right, more headaches, a bit fuzzy headed and really tired, so I called the GP again. I asked her if this was a response to coming off the pill, she said it was unlikely and if it was, I would probably be ok once my body adjusted.
As headaches like this were not normal for me, the GP wanted some input from Neurology. I got an appointment to speak to a Neurologist on July 20th. The Neurologist diagnosed migraine, offered to prescribe amitriptyline as a migraine prophylactic and just to be sure he wanted a head MRI to rule out anything more sinister. When I asked could this be because of a change in hormones, I was told I was speaking to the “wrong man”. Fully convinced I would get better soon; I declined the amitriptyline as I wasn’t keen on taking drugs if it wasn't necessary.
That week my symptoms got progressively worse, more severe headaches, more fatigue, and now I was starting to feel quite dizzy, and I was really tearful (I just couldn’t seem to control my emotions). On Friday July 24th, I had fallen asleep on the sofa, I woke up at about 11pm to get myself off to bed. As I stood up, I had a severe pain and pressure in my head, by the time I got to the bathroom a wave of nausea hit me and I felt very faint. I laid on the floor, for the feeling to pass but I couldn’t get up. The Neurologist told me earlier that week that if my symptoms changed to go to A&E. An ambulance was sent and they took me off to A&E for some tests.
A blood test came back normal and a head CT scan was inconclusive and I was discharged the following morning. By this point I felt truly awful, getting from my bed to the sofa was all I could manage. Having a shower was very difficult as I felt dizzy and light-headed instantly. On August 2nd I had a head MRI which thankfully also came back clear. But as the days passed the list of my symptoms got longer. I started to feel shaky, quite anxious, and panicky, I had heart palpitations, dry mouth and my neck and shoulders started to ache. I was motion sensitive, light sensitive, had ringing in my ears and was really sensitive to noise as well. I couldn’t believe that I could feel this awful and have tests coming back as “normal”. In the space of just a few weeks my life was turned upside down and I was completely debilitated by these symptoms.
I was convinced my symptoms were due to the hormonal change from coming off the combined pill and so I just hoped that my body just needed some time to rest, adjust and find its new normal and so I spent a few weeks annual leave on the sofa distracting myself from the pain with Netflix.
With no signs of improvement and feeling pretty desperate for help, I had several more conversations with several GPs. I was being told there was nothing more they could do for me. It sounds like “chronic fatigue”, “all your results are normal” and one GP even said to me “I don’t know what you want me to say”. They made me feel like I was making up these symptoms and the severity of them. Fully convinced this was hormone related I asked if they could refer me to gynaecology. I was told that as my hormone profile was within range, they wouldn’t refer me.
By September I got to the end of my annual leave and my symptoms were so severe that I was no longer able to do my job as a University Lecturer. I had no other choice but to go on sick leave, something I had never needed to do before. In the space of 8 weeks my whole life had been swept from underneath my feet and I felt like I was trapped in a body that wouldn’t allow me to function anymore.
I was truly scared as I had no idea how I was going to get myself out of the situation I was in. Doctors were not helping me and although I had some really great friends around me who were looking after me. Nobody was actually helping me to figure out what was happening to me. This was terrifying and an extremely dark place to be in. There were days when I wasn’t sure whether I could go on much longer and I certainly did not want to live like this.
I spent months researching symptoms and possible diagnosis. I spent hundreds of pounds on acupuncture and physiotherapy without any real relief. I finally got a follow up appointment with a neurologist in October, this time he diagnosed chronic migraine. He put the dizziness down to benign paroxysmal positional vertigo and gave me some vestibular exercises to do and put the neck and shoulder pain down to physical inactivity. Not convinced by his diagnosis but desperate for relief, I was open to any suggestions on drug treatment. He prescribed propranolol, a beta blocker for migraine prophylaxis. This medication did nothing to help me. Instead, it lowered my resting heart rate so much (I recorded 33 bpm at one point) that I often felt breathless just lying down. After 5 weeks I decided to stop the propranolol. Still desperate for relief I agreed to try amitriptyline. After a few weeks this treatment did give me some relief (the headaches were less severe) and I decided to trial going back to work on a slow phased return. As the doctors told me I had chronic migraine, I researched as much as I could to try and help myself. I cut out caffeine, cheese, chocolate, citrus fruits and absolutely anything that could be a possible migraine trigger.
Although I had some relief from the amitriptyline, I was still suffering with symptoms daily and I was still very limited in what I could do. I was a shadow of my former self. I thought enough was enough and I decided to see a private gynaecologist. He wasn’t convinced my symptoms were hormone related either, but as I was paying him, he was more willing to hear me out and trial treatment options. Since coming off the combined pill I had 4 very light, short menstrual cycles and then they stopped completely. It was clear PCOS was recurring. It also helped to show that my progesterone was indeed low. From my research, I told the gynaecologist about a Canadian Endocrinologist Dr Jerilyn Prior who treats her patients with PCOS with progesterone therapy. Thankfully my gynaecologist agreed to let me trial cyclical Utrogestan (a progesterone, 14 days on and 14 days off). After a few months I saw some more improvements in my symptoms, but I was not having a withdrawal bleed in the 14 days off. From my research I discovered that this was a physical indicator that my estrogen (although within range) was also low. Through further research, I discovered the work of Dr Louise Newson aka the Menopause Doctor and her Newson Health Clinic. I read all of her literature on peri-menopause/menopause and listened to her podcasts. My symptoms sounded exactly like perimenopausal/menopausal symptoms and so I went back to the gynaecologist and this time I also asked him to prescribe me an estrogen patch. Although very reluctant, he agreed to prescribe me an estrogen patch (25 mcg, which is the lowest dose) for 2 months. In this time, I saw some more slight improvements in my symptoms, which gave me some hope that I was on the right path.
In June 2021 I decided to put myself on the waiting list for Dr Newson’s Clinic as I knew the waiting time was quite long and my gynaecologist was having reservations about increasing the estrogen dose. After a two month trial, he reluctantly prescribed the 50 mcg estrogen patch, my thinking was that this would have to do until I am seen by the menopause specialist at Newson Health. After five months on the waiting list, I finally had my appointment with a menopause specialist in November 2021. She reviewed my bloods and listened to my story and after a very in-depth consultation, she diagnosed premature ovarian insufficiency/early menopause. We discussed a treatment plan which includes making adjustments to the HRT dose and my doctor was hopeful that with the right dose, my symptoms will continue to improve.
They say that in times of despair people can grow. I have even heard it termed “post traumatic growth”. I am a Certified Health Coach and University Lecturer & Researcher in Health Physiology. Through my work, I have helped many people living with various health challenges to improve their health and well-being. Not sure if and when I would be able to return to full-time work I decided to launch Dr Jen Coaching, a private Health Coaching practice dedicated to help women improve their current and future health and well-being.
As mentioned above, through my research I discovered the work of Dr Louise Newson and her team. They have developed specific training to upskill GP’s and health professionals to help them provide better support to women in the perimenopause and menopause. I myself have now completed this training and it is the reason why I am focusing my health coaching specifically to help and support women in this stage of their life.
I know what it feels like to have a hormone imbalance/deficiency. I also know how devastating it is to live with debilitating symptoms daily and not being able to do the things that you once did with ease. I also know what it is like to recover and build yourself back up. I am doing this myself right now, one step and one day at a time. That is also why I want to help women, just like me and you who may have a hormone imbalance/deficiency like PCOS, POI, perimenopause and menopause, because no woman should feel alone and suffer unnecessarily. I want to help women to achieve their health, well-being and life goals whatever that looks like for them, because I KNOW THEY CAN.