Verity is the UK charity for women with PCOS and supports thousands of women living with polycystic ovary syndrome. Verity's mission is to improve the lives of women with polycystic ovary syndrome (PCOS) which we aim to do by: - Supporting and empowering women with PCOS - Improving the quality of, access to, and choice of treatments available.
“Right, unless there are broken bones – no one is backing out now” my chairman Chris signs off the email confirming I’ll be cycling from London to Paris in June 2019. Typical cocky me thought – how hard can this be? This is how hard…
So, first things first, I needed a bike. I looked for a few days (minutes) but quickly realised the style I wanted was way out of my price range, of course it’s what it looks like that matters (Right Paul?) Sense the sarcasm there. Luckily my trusty friend Keith at work said I’ve got a bike for sale I’ll do you a good deal. Sorted. Hard part over.
Having not ridden a bike since probably the late 90’s, my first, crisp, November morning ride was a big reality check. One: I am terribly unfit, 2: extremely overweight and 3: I have the balance of a toddler. 5 miles down and started to feel ok, I managed to get to 12 miles and remember feeling extremely chuffed. Over the next few months my 12 miles jumped to 22, then to 32 and then 72. I’m really getting the hang of this. now don’t get me wrong I have zero feeling in my bottom and I still have no idea how to turn 72 miles in to 300 but I’m excited.
It’s now April, my friend Ellie and I have been training weekly, getting excited about what France will be like, what outfits we are going to wear and how much wine we think we can get away with drinking each night. We cycled towards Gravesend, as I crossed the slip road to the motorway I broke sharply and slid off of my saddle down on to my crossbar. When I say I went blind with pain I am seriously under playing it. You know when you stub your toe and you hold on to it and someone says let’s have a look and you can’t let go? That feeling but so much worse! I managed to get across the road and finally home but over the next week my “lady area” changed to a deep, dark, scary shade of black and the bruising travelled nearly up to my belly button. Scarred for life, how was I going to ever ride a bike again?
A week off and gave it another go, I was OK, I was cautious but I was OK.
The office was buzzing as the trip grew closer, we all were so excited for something so daunting, well to Ellie and I anyway. Looking forward to seeing the beautiful French countryside, eating cheese and meeting my boyfriend in romantic Paris.
The day arrived. We all meet at the office, mum, uncle, boyfriend and in-laws all there to wish me well on my adventure. I’ve trained, I’m ready, padded pants on. We gather round for a group talk form the organisers and they give us a bit of information on what to expect from the first day. One thing sticks out to me at this point, the weather was forecasted to turn from the sunny, not too warm morning to rain and but I’m ok with that I’m prepared, I just got a new rain jacket £7.99 from eBay. Barg. We set off and before I know it my trainers are soaked through; my budget raincoat is wet inside and I’m secretly ready to turn around and go home. Spirits are still incredibly high despite the falls and punctures. We stop for lunch and stuff ourselves with sandwiches and chips. Making our way down to Dover we stopped off for a quick Brandy in a little pub, any excuse! By this point we were told we really needed to get a move on, the ferry was at 6:20pm and we were against the clock. 18 riders rolled up to the boarding point at 6:00pm. Close.
Ellie and I went to bed that night in our funny little French hotel and I thought to myself what the hell am I doing. This was a huge mistake. She agreed. Thank god!
Day 2 brought even harder rain and stronger winds. Great. I sobbed for the first hour and Chris and I battled the mountain of a hill together. Already soaked through and not even 10 miles in, I stripped off my wet clothes for dry and traded my crappy rain coat for Grandad Micks walking jacket. My bum was so sore by this point I could barely sit on my seat. The special botty butter you’re meant to use which I had lathered on squatting in my hotel room that morning had washed away in the rain with my spirit. This was harder than anything I had ever done and I was feeling so defeated, Ellie and I jumped in the van for 35 miles to dry off and try and cheer up. Oh, and give our bums a break. After lunch I jumped back on and thought no, I cannot give up, I have to try again. I’m doing this for charity and I really don’t want to let anyone down. Del and Gary got me through the worst of it. I am not a quitter. Girl power.
As I walked in to the dinner room that night I felt 10ft tall, a massive sense of pride in myself and once you feel that, you want more. Everyone was so happy for me that I’d managed to get back on and complete the day. What a feeling!
Day 3, Ellie and I were told that we would be able to go at our own pace without the pressure of trying to keep up with the other riders. We were only little slower than them, only a little. What a day, we laughed, we sang, the sun was shining, this is what we had signed up for. 10 hours just having a good old chin wag. We are pretty good at that. We had our own support vehicle, our Martin checked in on us, topped up our water bottles, egged us on and snapped some action shots. Abbeville to Beauvais was a good day and a day I don’t think I’ll ever forget. That night we drank and laughed and we all felt like we were on our ‘olidays.
The final day, I think we all woke up with fuzzy heads and the regret of having that final G&T. I knew today was only 54 measly miles until I saw my mum, my sister and my boyfriend waiting under the Eiffel Tower. Ellie and I were still buzzing from the day before so we were ready to get on the road. Not even a mile up the road and we take a wrong turn (typical) back on track in no time. The closer we got to Paris the less my bum started to hurt and the sadness that this is going to be over soon kicked in. We cycled to the Arc De Triomphe and down the Champs-Élysées, emotions started to get the better of me and the tears had started. Jed rolled his eyes. As I cycled around the roundabout at the Eiffel Tower, I heard cheering and screaming and saw a huge banner that read “Well done Hayley” and my family. I have tears in my eyes just writing this. I could barely get off of my bike, the relief of feeling my mums’ arms around me finished me off. Everything leading up to this moment had been so worth it just for that. I felt like I was on top of the world. My boyfriend Matt and my sister Amy-Leigh rushed over and hugged me. Mum said “let’s get you some champagne” music to my ears, let’s. Behind my huge banner was my auntie Alison and my cousin Holly, what a surprise! I could have fainted! Without a doubt one of the best days of my life and 100% my biggest achievement.
All of the riders, support team, family and friends ate dinner together, drank and danced the night away. What a way to finish it off. I think Ellie and I got back to our room just before 5am. Sorry to everyone we woke up with our singing. Not.
I chose to do the ride for Verity because sadly I have only just recently found out they exist. Reading all of the information they provide was like nothing I had seen before; I was diagnosed with PCOS years ago now and I could have really used the support they offered when I was at school. If I can raise some money, any money that can help get accurate information out there then I’m game. At 29 I have started to experience some of the more challenging parts, I felt inadequate, not feminine, different and most of all a little lost. Having PCOS can make you feel down and it can make simple thing like losing a big of extra flab that bit harder but there’s no way I was letting that slow me down. With social media platforms like Facebook I have been able to speak with other girls, women that are going through exactly what I am. We laugh and we joke and most of all we help each other out. I was given the opportunity to be a group leader for Kent. So, thank you Verity. Thank you for all you do. I managed to raised £845 so that’s coming your way.
I was never a bike enthusiast or a gym bunny and doubt I ever will be but I bloody cycled from London to Paris across 4 days with some amazing, amazing people and I would do it all again in a heartbeat. I’ve sold my bike to get a better one and I hope I can do something similar again one day… not too soon mind. But what I am is strong, it’s what I needed to prove to myself, I may be emotional and I may wear my heart on my sleeve but I am not weak. I have learnt so much about myself through this and I’ll always be grateful for the opportunity. I have memories with my friends and family that will last a life time. I have LOVED every second despite how hard it was.
If I could give any advice to someone considering doing the ride from London to Paris, don’t.
Written by Laura Murphy, Founder of Vicious Cycle: Making PMDD Visible project and on the Board of Directors at IAPMD.
PMDD (Premenstrual Dysphoric Disorder) is a condition that affects around 1 in 20 women and AFAB individuals but is less commonly known than it’s little sister, PMS. It occurs between around ovulation and around the onset of your period. If you are finding that your PMS is causing you to be very depressed, anxious, or perhaps even suicidal – you may want to look up PMDD.
“PMDD is a cyclical, hormone-based mood disorder with symptoms arising during the luteal phase of the menstrual cycle and lasting until the onset of menstrual flow. It affects an estimated 5-10% of women of reproductive age. While PMDD is directly connected to the menstrual cycle, it is not a hormone imbalance. PMDD is a severe negative reaction to the natural rise and fall of estrogen and progesterone. It is a suspected genetic disorder with symptoms often worsening over time and around reproductive events including menarche, ovulation, pregnancy, birth, miscarriage, and perimenopause”
It is hard to describe PMDD to someone who has never been through it – think PMS on steroids: PMS that makes you suicidal and unable to function – and there’s no ‘thinking yourself out of it ‘. Take any PMS symptom and multiply it to a point where it’s intolerable.
Symptoms of PMDD
Feelings of sadness or despair or even thoughts of suicide
Feelings of tension or anxiety
Panic attacks, mood swings, or frequent crying
Lasting irritability or anger that affects other people
Lack of interest in daily activities and relationships
Trouble thinking or focusing
Tiredness or low-energy
Food cravings or binge eating
Feeling out of control
Physical symptoms, such as bloating, breast tenderness, headaches, and joint or muscle pain
These symptoms occur during a week or two before menstruation and go away within a few days after bleeding begins. A diagnosis of PMDD requires the presence of at least five of these symptoms
There is no one experience of PMDD – it varies in timescale, severity and symptoms for each person. Some people may be symptomatic for a few days a month, and for others it can be up to three weeks, but the commonality is that the symptoms occur around the luteal phase (leading up to your period) and then you have a symptom free period of time after your bleed.
How do you get a diagnosis?
There is no blood or saliva tests to diagnose PMDD – that said, your doc should do a full panel to rule out other conditions (such as thyroid problems!) that can mimic PMDD.
A diagnosis is made via symptom tracking. This can be done via an app such as www.mevpmdd.com or you can get a printable paper copy here: https://iapmd.org/steps-to-diagnosis/ Tracking will be especially important if you suffer from irregular periods due to PCOS as it can be harder to keep track.
What are the treatments?
First line treatments are lifestyle changes (such as stress reduction) and hormonal birth control and/or SSRIs. Sadly all treatments are trial and error and there is no one size fits all (yet!). You can read more about treatment options here: https://iapmd.org/treatment-options/
What is the worst aspect of this condition for you?
The rollercoaster. Getting to the end of a week of hell with it, the cloud lifting and then sobbing as you know very soon you’re going to have to go through it again. The again. And again.
Taking out the massive effect it has on your life, the lack of recognition from Health Professionals is something I have found really hard. To feel like you’re losing your mind, have suicidal thoughts, feeling terrified and out of control and then getting the guts up to go and speak to a GP and be dismissed is UTTERLY soul destroying. It terrifies me how many people are out there suffering alone and no GP’s are putting the connection to hormones. It’s something I feel passionate about and I really feel there is a need for GP’s to know about and understand the condition, which I why I started the Vicious Cycle: Making PMDD Visible project. We are a group of sufferers working to help other sufferers and make sure they get the help they need.
For more information on PMDD:
www.iapmd.org – The International Association for Premenstrual Disorders are THE place to head for information. They have a website packed full of free resources and information. They also run a free one-to-one peer support service – so if you have questions or need a chat you can speak to someone who understands.
Verity has been involved with the International guidelines for PCOS since the start and this involved attendance at the International Conference on PCOS in 2018.
We have actively presented Patient views and perspectives and been involved in the research that directed some of the key areas.
Currently we are working with international bodies to look at how research needs to cover a core set of topics within PCOS meaning that there is a consistent approach towards research for anyone from University Students to Professors on issues that are focused upon. For example that the issue of treatment options are considered when approaching fertility issues. Alternatively that self esteem and identity is addressed on matters of PCOS and emotional health.
We will provide more updates as these conversations progress.
I am a 3rd year Biomedical Science student studying at the University of Warwick. I am conducting a research project entitled ‘Metformin, Polycystic Ovarian syndrome and Pregnancy’. As part of my project I am doing a survey to research the effects of Metformin on conception and multiple pregnancies.
I am also going to create an information leaflet based on survey findings about PCOS symptoms, diagnosis, treatment and complications experienced by women. This leaflet will be aimed at newly diagnosed patients with the intention of these being distributed throughout GP practices. I was diagnosed with PCOS aged 12 and I know from experience. I was very much left in the dark and left to my own devices to find out about the condition, which at the time, was very scary and overwhelming.
I am hoping to include information on the basic science behind the disease as well as some of the symptom’s patients may experience and ways to manage these symptoms. I will include a Q&A section and information on where patients can look for more advice and support. I am really excited about this project and hope to produce some really interesting results to share with fellow PCOS patients. If you are a women who has been diagnosed with PCOS and wouldn’t mind sparing a few minutes of your time to help with my project, please follow the link below. There is no obligation to take part and you can opt out at any time.
My name is Elena Santonja and I am currently completing my MSc in Psychology, at Nottingham Trent University. As someone who has Polycystic ovarian syndrome (PCOS) herself, I decided to focus my final dissertation project exploring predictors of Quality of Life in women living with PCOS. To do so, I am recruiting volunteer participants with PCOS, over the age of 18, and would be grateful if you could spare 15 min to complete my survey.
PCOS has been recognised as a common, heterogeneous, heritable, endocrine disorder affecting about 1 in 5 women in the UK throughout their lifetime. However, there is considerable inter-individual variation in the presentation of symptoms. Likewise, Quality of life (QoL) is a multidimensional concept that encompasses the physical, emotional, and social aspects associated with a specific disease, syndrome or illness and its treatment.
Accordingly, my survey is designed to identify predictive factors of quality of life in women living with PCOS, including coping strategies; illness perceptions; symptoms presented; and levels of well-being.
Whilst research on PCOS has incremented over the past years, it has become one of my main motivators to further expand our knowledge in the field of Psychology. I hope that you find the study interesting and will take satisfaction from helping me develop a greater understanding of the topic.
Thanks for your time and helping me achieve my degree. The results can be made available to you as a report, upon request, when the research is completed.
Have you been emotionally impacted by an uncertain fertility following a PCOS diagnosis? I would like to hear about your experience.
I’m a trainee counsellor undertaking research as part of my MA in Clinical Counselling at the University of Chester. As a counsellor, and woman with PCOS myself I’m really interested in hearing the experiences of others; through this study I aim to provide an opportunity to explore whether an uncertain fertility has a detrimental effect to psychological wellbeing. I hope that this will contribute to providing informed therapeutic care for women with PCOS.
The study will require you to take part in a recorded interview lasting approximately one hour. This will take place at a convenient place for you or via a video call. I am looking for women, between the ages of eighteen and thirty five, who have received a PCOS diagnosis over two years prior to participation and not yet conceived a child. You must also be able to speak fluent English.
If you would like to be involved in this research or are interested in receiving more information, please contact me via my email: email@example.com
Do you have PCOS and are you over 18? Please help us with our important research at UCL.
We are interested in how people with PCOS feel about their syndrome and how they view it. Taking part is quick and easy and involves completing a short survey. Participation in this study is confidential and anonymous.
For more information and if you would like to take part please click here
This study is being conducted by Rebecca Light, as part of the MSc in Health Psychology. The Principal Researcher is Emily McBride at UCL.
The study has been approved by the ethics department at University College London.
PCOS is a common condition in women that is often characterised by changes in hormone levels and irregularities in the menstrual period. It may present a range of symptoms, including increased body weight, high blood pressure, and high blood glucose levels which may lead to diabetes. Furthermore, the presence of these symptoms can lead to decreased self-esteem, poor body image and increased emotional stress. Increased physical activity has been shown to have beneficial effects on many symptoms of PCOS, despite this, women with PCOS reportedly have much lower participation rates in exercise and physical activity than their healthy counterparts. We aim to assess the physical activity levels of reproductive-aged women, and assess the effect of higher participation rates on the physical, and psychological symptoms associated with PCOS. Not only are we interested in your physical activity behaviours, but we also want to gain an understanding of what it is like to live with PCOS and the extent to which it may disrupt your day-to-day living and physical activity routine. Therefore, we are looking for UK-based, female volunteers aged 18-45, with AND without PCOS, to answer some online questionnaires about their physical activity behaviours, severity of symptoms and overall quality of life. If you are able to help, or you know somebody who may wish to participate, then for more information please contact Chris Kite at Aston University via email:firstname.lastname@example.org, or by phone: 07779 274722.
Last week Trustees Caroline and Kristine represented Verity at a Fertility Information and Well-being Day in Cardiff.
It was a great day for us to connect with patients who needed support and other organisations who were also offering support both medical and emotional.
Fertility Network are an important organisation in the UK offering support and advice to those who have experienced Fertility problems. We supported them earlier this year, during PCOS awareness month, with the #ScreamforIVF campaign which is calling for fair access to IVF services across the country, as recently it has become a postcode lottery.
We also picked up a a chapter sampler of ‘Trying’ by Emily Phillips, Grazia’s Features Director. It’s a frank, relatable and humorous account of her own experience of trying to have a baby.
But we know that fertility and general well-being with PCOS can be supported in many ways one of which being nutrition- and this can be such a confusing area to manage with conflicting advice from different sources.
Last weekend we met Trisha from Good Nutrition First who discussed the importance of good nutrition but also of being able to enjoy your food. She had a delicious Banana Bread and Raspberry Chia Jam recipe that we managed to get a copy of (and have made since then), that we’ve been given permission to share!
Instructions below, hope you all enjoy!
Banana Nut Breakfast Bread (adapted from Jeanette Hyde)
2 tbsp extra virgin olive oil
2 cups walnuts or 1 cup walnuts and 1 cup brazils
1 cup ground almonds
1 tbsp ground linseeds
1 tsp cinnamon (optional- but has been shown to have properties that improve insulin sensitivity so good to add!)
2 tsp baking powder (gluten free if desired)
2 small ripe bananas
3 large eggs
1 tbsp honey or maple syrup
Grease a loaf tin with a little olive oil and line with a small piece of greaseproof paper. Preheat oven to 180
Grind walnuts in a blender. Add to ground almonds, linseeds and baking powder in a bowl.
Blend the bananas, eggs, rest of the olive oil and honey/maple syrup. Add to the dry ingredients. Stir well.
Pour batter into loaf tin.
Bake for around 30 minutes or until a skewer comes cleanly out of the mixture.
Remove from oven, turn out and allow to cool
Serve with berries, Greek yoghurt or the Raspberry Chia Jam below.
Raspberry Chia Jam
500g frozen raspberries
40g chia seeds
2 tbsp water
2 tbsp organic maple syrup
Stew berries in 2 tbsp water over low heat until fruit breaks down and becomes syrupy. Mash fruit (or blend of you like smooth jam).
Stir in maple syrup, chia seeds and any spices you wish to add.
Cool for a further 2-3 minutes then remove from the heat and let stand for 5 minutes, until thickened. (If you prefer thicker jam you can add 1 or 2 teaspoons of extra chia seeds)
Once cool transfer to 2 small jars.
The jam will continue to thicken and set once completely chilled. Will keep in fridge for up to 2 weeks.
If you are just one intolerant you can try blackberries or black currants but will need more maple syrup
Have you had treatment with Clomid for fertility issues?
I am looking for patients who would be happy to be interviewed about their experience of receiving treatment with Clomid. This study will help us to ensure that patients are receiving treatment in a way that is best for them.
If you choose to be involved, you would meet with a female interviewer at a location convenient to you, such as a hospital or at your home. This can be at any time, including evenings or weekends. We are unable to reimburse travel costs but we are happy to travel to you.
To take part in this study, you must:
– have taken Clomid in the past, or be receiving treatment currently
– live in the UK
Participation is entirely confidential and any data collected during the interview would remain anonymous. The study has been approved by Newcastle and North Tyneside HRA Research Ethics Committee.