Sunflower Diaries

Written to inspire other women with their journey.

Welcome to Sunflower Diaries.

About me:

Hi, I am Joy. I decided to write this blog to raise awareness of living with chronic pain and how to keep upbeat in even the darkest/ loneliest days.

I am a mother to one wonderful daughter and a wife to a very supportive husband. I met my husband during our PhD journey (story for another blog/ reflections I am sure). I knew from the moment I met him that it was true love. Our research and personal interests aligned well which made it easier to communicate and grow together. 

My love for him has grown stronger every day and more so since our daughter was born. He is an inspiration to fathers. 

We knew we wanted a small family one day but did not realise the issues I had as a young woman/ teenager would impact our fertility journey and lives to the extent it now has. 

So, I am 1 in 10%. I have endometriosis. There is no cure.

But to add complications I also had adenomyosis (more about this below as I document my health journey).

I have chosen the name sunflower diaries for my blog to symbolise endometriosis. The sunflower is synonymous with growth, vitality and positive energy.  My hope is to inspire other women and raise awareness of this disease; as well as adding positivity to your life. Future blogs posts will focus on lifestyle, fashion (as a mummy), sustainability, nature and wellness tips.

Health journey:

From a young age (age 11), I experienced heavy menstrual periods and debilitating pain, and embarrassing (or to a young woman) symptoms.

I dreaded the “time of the month” as it was filled with intense pain/ hormonal issues (yes imbalance causes mood swings) and a fear of leaving the house to avoid embarrassment. Needing to go home and get changed at lunchtime is never fun. Being afraid to use school/ public toilets.

As any young woman/ lady would know, this bleeding and fear is not normal and should never be normalised. 

Some of my friends had very little pain or did not need to rely on emergency pain killers from a relatively young age. Sadly, a habit I have not yet stopped, I carry paracetamol (just in case) out and about and to work. 

The pain worsened as my cycles progressed, and I was unable to think clearly (at points) which was not healthy as a teenager sitting exams. This made me feel hopeless and unable to advocate for myself-when I needed confidence in buckets to achieve my goals. My mother took me to the GP expressing concerns and I was told to go home and calm down/ use hot water bottles – it was probably anxiety. No one ever thought to ask me why I was feeling the way I did/ losing weight quickly/ feeling very light headed (only mid and end of my cycle). 

I kept going back to the Dr/ GP for advice and support. My mother was again told she is probably depressed. I guess others in this position would feel the same (hopeless) as the pain was so bad at times I was vomiting and fainting/ near fainting (from blood loss). Even a routine blood test became a challenge. 

In 2003, I even collapsed during my Gold Duke of Edinburgh expedition (I just laughed it off and said, it was probably the weight of the backpack). Unknowing to everyone the pain I was in – as I had “the time” climbing up Scotland’s munros. Looking back – I have no idea how I coped aside from an emergency red bull (my friend had stowed away) and a mars bar. After that I had the energy to bounce up the hill on the last day. Gaining the nickname “Tigger” from friends. I have always loved Pooh and friends, so it was a fair nickname.

I usually had boundless energy outside of those times of month (well as a teenager/ young adult). My husband would agree when he met me – he was like how and why do you have so much energy? The truth is I don’t know how I did it. A distraction from the pain I was suffering, perhaps?

The summer of 2004, I finished High School and before starting University, I had a short spell in the local Territorial Army (reserve in the medical corps), I was due to complete my initial training and attended a weekend course.  It was at this point where I fainted (felt very embarrassed) at the passing out parade. One officer commented (and joked) you are not meant to take this parade literally.

The Dr was concerned and sent me home the next day, and said to investigate with my own GP. 

I had various tests over the summer – all inconclusive. No reason for fainting. Must be anxiety. ‘Now I know Differently’ anxiety driven by high blood pressure and not low blood pressure and fainting. I was young and naive and felt anxiety was used to gloss the problem. 

I was put on the contraceptive pill at age 18 which did not reduce the pain but did limit the bleeding. I kept going back and tried various hormonal treatments, but I was told I should change my diet as I was not getting diagnostic tests. 

I was diagnosed / suspected to have Irritable Bowel Syndrome (common mis- diagnosis as many cross overs in symptoms) and told to eat mints/ chew gum and take “buscopan”. 

I was still not convinced but told it was so…and was so low in confidence, at this point, so I thought ok I will see if it makes a difference. I also reduced dairy and ate healthier (low fodmap).

….

A few years later, after a stressful MSc year, I was experiencing exhaustion and kept falling asleep in the strangest places (including the lecture theatre and no the lecture was interesting). I was again advised to go to the Dr and get a blood test and see whether I needed other tests (as this happened during undergraduate and previous MSc). I thought “it’s fine”, I will go home and rest and resume studies in a few days. 

I did. I had just started my dissertation and had an unexpected call from my GP who said I had anaemia. I was prescribed iron supplements and told to take contraceptive as usual. 

I was told by GP during PhD to discontinue iron supplements. 

Unfortunately I had an accident and ended up with post concussion migraines – meaning I had to change hormone treatment. Part of me was relieved as the bleeding and pain was exhausting…

I was given POP / Cerelle, to see if this limited my symptoms. The pain and bloating still persisted (allergies) but the bleeding was limited. I occasionally had spotting which I was told was usual on this pill… but in my mind I could live with the pain and bloating (as I was used to it) if I had no bleeding.

Sadly the chronic fatigue and exhaustion never stopped. This made it more difficult to pursue my PhD but my tenacious spirit helped with this. I was so determined to get it done and show myself what I was really capable of. 

I continued along this course of treatment  for several years until pregnancy and birthing my daughter.

Pregnancy was difficult (early threatened miscarriage, anaemia), bereavement (mother), and of course being in a global pandemic made everything 10 times more difficult.  This was coupled with a series of delivery and post natal complications and gynaecology surgeries. 

I am so grateful we have our daughter. I just wished I had been listened to at a young age/ although our outlook would probably have been different. 

I feel truly blessed to have one daughter (intelligent, caring, and adventurous little girl) with my wonderful husband. I hope he realises how much we love him!

Diagnosis and Surgery:

I was finally diagnosed with endometriosis (and adenomyosis) in 2022. I was 36. That was 25 years after starting menstruation and 13 years after being diagnosed with “depression” and “anxiety”. The main source of my anxiety has been the uphill struggle of getting listened to. No one wants to be in pain… and I am so happy to now be listened to. Thanks to the surgeons and clinical experts involved.  You are truly a credit to your profession.

Surgery History:

2022 – surgery one: age 36

Diagnostic laparoscopy/ hysteroscopy

Laser ablation and excision of endometriosis 

Mirena Coil 

Diagnosis (my golden ticket) – Endometriosis and Adenomyosis

2022- surgery two: age 36

Hysterectomy 

Removal of fallopian tubes/ left ovary (and cyst) and cervix

2023- 2024- period of bad health resulting in gynaecological surgery number three. I tried other hormone treatments but pain became severe again. I even was prescribed the new Ryeqo. This was great to begin with but after 3 months my pain escalated. Clueless I went back for a second opinion – as I could barely walk.

2025 – surgery three: age 39

Removal of right ovary

Excision of endometriosis 

HRT – surgical menopause at 39 (best decision for me, my family and career). 

Red flags to be aware of:

Not being listened to – key one for me. I was so thankful when I was listened to.

Change in conversation/ direction to other treatments.

Being told “it’s in your head”/ dismissive of pain/ severity of condition.

Constant abdominal and pelvic pain or other undiagnosed pain (watch out for nose bleeds and chest pain/ infections)

Bleeding 

flooding clothes and bed clothes (not normal)

clot size and consistency (particularly post natal)

irregular bleeding or heavy spotting and pain mid cycle

Toilet troubles

Abdominal swelling or other swelling

Infection 

Only being able to go to work and not socialise (been centre of many disagreements over years). I sadly lost on out on so many special occasions. 

Chronic fatigue – yes it is real! If I need to rest or sleep, I am not hiding away. 

Black outs – yes scary when it happens (even during exams). 

Dizziness – part of low blood pressure

Nausea and vomiting

Fainting – can cause serious injury depending on where you collapse / if someone catches you. 

Anaemia – can be managed with appropriate care and advice.

More on Endometriosis UK. Specialist and clinical advice and tips.

Blog Inspiration:

Nature: beauty of spring. 

I live near a pond and it’s wonderful to hear the baby birds. Nature is very therapeutic for me. I have always been connected with nature and love showcasing its benefits. I even did a PhD blending engineering and ecology. 

Music: recovery and soft music/ 80s and 90s power ballads

Mainly been listening to smooth radio (very calming music)

Song: She’s Like the Wind – Patrick Swayze (from my all time favourite film: Dirty Dancing)

Podcast: Good Vibes, Good Life – Vex King (also an amazing author – recently gifted his book)

Top Tips for recovery from surgery:

Beauty: 

La Roche Posay – Thermal Water spray (amazing for hot flashes and to reduce skin irritation)

Palmers Cocoa Butter – for scars and stretch marks

Batiste Dry Shampoo – good to have in case you are too sore for a shower. Like me this morning. 

Fashion:

Comfortable clothes have been key to recovery. You don’t want anything to rub/ accidentally tear your stitches.

Leggings / pyjama trousers. 

Not been able to wear jeans or tight trousers for months. Looking forward to this in the coming months. So many woman will support me with this (the freedom to wear jeans is incredible). 

Loose fitting T-Shirts or jersey dresses (personal favourite : Joules) 

Mini Ugg boots – easy to slip on and can be worn inside and outside. Warm and cool at the same time. Provides more support for my feet. My previous ones were worn in pregnancy/ early motherhood (all the time).

Colourful / patterned socks.  I have always liked nice socks and bright colours (cheer you up on darkest days). My mother taught me this and always bought the best Christmas socks (future blog).

Wear something that makes you smile (always). I was once given advice from my sister in law who said she always wore a nice piece of jewellery to cheer her up. Great advice.

I like Fable Jewellery (Butterfly necklace) which is featured in my recovery photograph. I also own duck and swan earrings as a subtle nod to my PhD.

Book: 

The Signal and the Noise: The Art of Science and Prediction (Nate Silver).

Husband recommended a few statistical themed ones after I read all of my birthday books (wellness and mental health based). 

Photos of the moment: