This Endometriosis Awareness Month we’re sharing real stories to raise awareness! Here we catch up with Endo Warrior Sinead Smythe, who talks us through her endometriosis diagnosis story. Plus, Sinead shares her own tips to help you prepare for surgery!
“My names Sinead Smythe, I’m 22 years old and endometriosis affects almost every aspect of my life! My job, my social life, relationships and my eating habits. Most children I knew growing up were worried about acne, sex and what they looked like when they hit puberty. My worry was reaching the time of the month when my period came!
When it all started…
I was 11 years old when I first started my monthly circle. The pain I was going through as such a young girl was unbearable. I can’t even put into words the pain I experience on my period. It was so crippling I couldn’t move. I would be stuck rolled up in a ball for hours on end. Often, I had to take time off school and then college due to the severe pain.
To try and combat the pain and lighten the flow I was put on the contraceptive pull – not because I was ‘sexually active’ but this was the only thing the doctors could offer me at such a young age.
Throughout years and years of never-ending pain and hundreds of trips to the doctors and A&E with no help in the slightest, I decided to take myself to a sexual health clinic (aged 18).
Searching for a diagnosis
At first, I was diagnosed with PID (pelvic inflammatory disease) but after finishing the medication nothing had changed, I was still in the same boat as I was in before! I went on for more tests looking for STD’s which kept coming back clear. They gave me more PID antibiotic’s… ofloxacin, metronidazole, ceftriaxone and doxycycline. Two at a time, two weeks’ worth, in total I had 16weeks worth of antibiotics. I can still remember now how drained and poorly they made me feel.
Eventually, when the Doctors realised these weren’t working, they passed me to a consultant for further tests. I was then referred to have a laparoscopy. I remember feeling so relieved thinking I might finally have an answer.
After the operation, the consultant stood at the end of my bed and said:
“You have something called endometriosis, we found and removed 3 parts of it from your pelvis”
My initial thought was – “What the f*** is end-oh-mee-tree-OH-sus?”
I was left so baffled and confused. Don’t get me wrong, my surgeon was brilliant and made me feel so comfortable, but I was left not knowing much about endometriosis. Mistakenly, I thought the pain was gone for good. I wasn’t aware that this was a chronic reoccurring condition!
Living with endometriosis
After getting the diagnosis, I lost 2 jobs due to endometriosis as I became unreliable. My employers didn’t understand. They thought I was lying because I didn’t physically look unwell, some just dismissed it as a ‘bad period’ or called me a ‘drama queen’- I started to feel numb. This is when I started doing my research on this dreadful illness and frequently went to see the doctors for help.
One doctor actually told me to have a baby as that’s the only way it will cure me! At 19 years of age, in no relationship, telling me my only option was to have a child was frustrating to hear. I also got told that having children may never be an option for me due to infertility caused by endometriosis. That hit me like a rock. Another doctor told me a hysterectomy is also another option for women when the endometriosis grows back more aggressively.
Between trying to manage the symptoms, navigating the diagnosis and hearing such extreme information this is when depression and anxiety took over.
I went into such a dark place I never actually believed I would get out of it. I genuinely thought… this is it; career plans, friendships, future dreams = ruined.
No-one understood what I was going through, I felt like the whole world was against me. I was known as being dramatic, lazy and a huge ‘F*** up’ basically.
I found out 1 in 10 women of reproductive age in the UK suffer from endometriosis. 10% of women worldwide have endometriosis – that’s 176 million worldwide. The prevalence of endometriosis in women with infertility can be as high as 30–50%.
The same number of women suffer from diabetes as they do endometriosis. But only 20% of the public have heard of endometriosis, compared to 80% for diabetes. (side note, I ‘m not slating the knowledge on diabetes before anyone comments on comparing, it’s a figure of speech and I know the knowledge isn’t on top marks for diabetes either).
After learning this information, I felt passionate about raising awareness for endometriosis and mental health, taking to different social media platforms to spread the word (Instagram, Facebook and YouTube).
When setting up on socials, I was speechless from the number of women who reached out to me! Not only in the UK but WORLDWIDE. It made me extremely emotional knowing there are billions of women/young girls out there who feel exactly the same and are going through what I’m going through. I realised I AM NOT ALONE.
I’ve learned you’ve got to find something in each day to strive for, even if that’s getting out of bed in the mornings when you’re feeling drained. Even the smallest achievements count. One small positive thought in the morning can honestly change your whole day! It’s not easy, I know (trust me). I didn’t know I was going to wake up one day and never get better. I didn’t know I was living with a long-term incurable invisible illness BUT you cannot let endometriosis take over your life completely, you cannot let endometriosis win this battle because it has the power to destroy you mentality and stop your dreams!
Look how far you’ve come already…Life is tough my darling’s but so are you. FIGHT.
Some tips before I go…
I’m sharing a few tips on what worked for me to prepare for surgery and recover post-surgery:
o Before surgery, if you’re worried about anything at all, make sure you talk to someone! Whether that’s someone who’s been through it; your friend, family member or surgeon. I’ve had 2 laparoscopies now and both times I was a nervous wreck! Luckily, my surgeon and the nurses who saw me before comforted me and reassured me as much as they could.
o Wear comfy clothes! Nothing too tight. Dressing gown and slippers are my personal choice!
o Stock up on pain relief before your surgery
o Stock up on peppermint tea or peppermint capsules before your surgery
o If the gas moves into your neck, back and shoulders get someone to massage these areas for you as it can be very uncomfortable. Walk around the house, don’t do laps and overdo it but it helps to move the remaining gas!
Thanks to the lovely Sinead for sharing her story and tips! You can find Sinead on socials – Instagram, Facebook and YouTube. For another story this Endometriosis Awareness Month check out Sally’s blog where she also shares her tips to manage endo symptoms.