March is Endometriosis Awareness Month and last month I decided to take part in the Endo Photo Challenge over on Instagram. Since then I’ve had another laparoscopy and I’m so happy to say that it’s disappeared. They removed cysts that were causing me pain but other than that there was nothing to remove. I’m not sure if that means I’m Endometriosis free for good or if it will grow back in time but for now I am absolutely over the moon. It feels like I’ve had so many doors opened for me now and hopefully in time I can live a normal life again. As I still suffer from pain I’m being forwarded on to a Gastreonolgist for some further examination but for now I’m just happy to be Endo free. Here’s part 1 of a compilation of posts for my Endo Photo Challenge, I hope you find it informative.
Day 1 – You
So I decided to take part in this year’s #EndoPhotoChallenge and unlike last year I hope to do the whole thing and not just two days worth… March is Endometriosis Awareness month so I hope that by taking part I can inform people about my disease and share my experiences with the #1In10 women that also live with Endometriosis. Day 1 of the challenge is ‘you’ so here’s a little bit of information about me. My name is Cíara and I live in Galway in the West of Ireland with my wonderful fiancé and dog baby. I’m 24 years old and have been suffering with Endometriosis for a number of years now. It affects a lot of my everyday life, but I try to work through it by reading, blogging and drawing. I’m looking forward to seeing all of the posts on Endometriosis fill up #Instagram this month. Happy Endometriosis Awareness Month!
Day 2 – Endometriosis
Endometriosis is a disease where lining similar to the lining in the uterus (Endometrium) grows elsewhere, causing inflammation, lesions, pain and scar tissue. It’s a debilitating condition that causes chronic pain in 1 in 10 women that affects their quality of life. It is not known what causes Endometriosis and there is no cure. Some of the symptoms of Endometriosis are painful and abnormal periods, heavy bleeding, pain during and after sex, fatigue and infertility. To sum it up, it’s not fun.
Credit for this image goes to Camila Carlow, an artist that makes beautiful anatomical images with flowers.
Day 3 – Diagnosis
The only way to properly diagnose Endometriosis is through a laparoscopy, where a microscopic camera is inserted through the belly button. It is rarely diagnosed through ultra-sound as the Endometrium and lesions can be tiny and hard to detect. I was given two ultrasounds which showed up negative but I pushed for a laparoscopy as I was still in a lot of pain and refused to believe that it was IBS or that the pain was “all in my head” as some doctors tried to say. I finally had my laparoscopy on the 12th of December 2013 where they found Stage 1 Endometriosis. Coming around after surgery I groggily asked the nurse if they found anything, and when she said yes I couldn’t stop smiling because I finally had proof that the pain was real. Even though Stage 1 Endometriosis is classed as mild, with Stage 4 being severe, sometimes women with Stage 1 Endometriosis can display more symptoms than women with the latter. Every case is different. In my case, the Endometrium growth causes a lot of pain for me not because of how much there is, but where it is.
Day 4 – Symptoms
There are many symptoms of Endometriosis which cross over into many gynecological conditions, making it very difficult to convince a doctor that it’s more than just a “bad period”, which is why it takes so long to diagnose. Some of the symptoms are painful periods, heavy bleeding, abnormal periods, pain during or after sex, chronic abdominal pain, incontinence, painful bowel movements, vaginismus, fatigue, nausea and infertility. One of the major symptoms for me is heavy and abnormal periods; I can bleed for 5 weeks and up. Since my last operation I’ve been bleeding for 5 months, causing me lots of pelvic pain and fatigue as well as many trips to A&E. If you feel that your period isn’t normal and your cramps are overly painful please consult your GP, periods cause discomfort but you shouldn’t be writhing in pain. Take care of your coochie.
Day 5 – Medication/Treatments
There is no cure for Endometriosis but there are some ways that it can be treated, such as the pill, pain medication, the Mirena coil and surgery. To date I’ve had a laparoscopy, a colposcopy, a hysteroscopy, an endoscopy, used the pill, the Mirena coil, pain medication and had a medically induced menopause. None of these have helped me to manage my Endometriosis. I’m going in for another operation in April to surgically remove Endometrium and lesions, as well as having the Mirena coil removed. Fingers crossed this one works; onwards and upwards.
Day 6 – Hobbies & Interests
One of my greatest new hobbies is blogging; since the start of the year I’ve really embraced it as a creative outlet to share my writing and thoughts. It’s helped me to form a routine around reading, writing and creating content that I want to share, and while I know that not a lot of people see it, it gives me a small sense of self worth and purpose – something women with Endometriosis can start to lack. Other than blogging I love to read and draw, though lately I’ve found it hard to pick up a pen. Endometriosis can leave women feeling tired and un-motivated, so it can be hard to do the things you love. I try to find a balance so that I don’t get disheartened by this. When I don’t feel motivated to draw I read, and when I don’t feel motivated to read I write. A continuous, happy little circle of productivity.
Day 7 – Favourite PJs
This was a really cute one to photograph. Unfortunately (or fortunately, however you look at it) prolonged, painful periods and pelvic pain means a lot of Endo sufferers spend most of their time in pyjamas as they’re most likely bed or couch bound, tired and cradling a hot water bottle. I have more pyjamas to wear than I have regular clothes! Besides my boyfriend’s comfy pyjama pants these owl ones are my favourite – so cute and comfy.
Day 8 – Yellow
The colour associated with Endometriosis is yellow. Almost everything I own is black so I was worried I wouldn’t have anything to show for it, but thankfully I have my cute little Pikachu phone cover.
Day 9 – Distraction from the pain
My little rescue dog Mia is the best hot water bottle I could ever ask for. She’s such a lap dog that on my bad days she’ll snuggle up on my lap for hours while I binge watch Netflix. Plus, look at that adorable face, how could you not feel better?
Day 10 – Endo makes me feel…
To be completely, wholly raw and honest – Endometriosis makes me feel like less than a woman. This has played on my mind for years since my diagnosis. I can’t do the one thing women are built to do. My Endometriosis growth indirectly affects my chances of conceiving a child and I don’t know if I will be able to have my own children in future. Sometimes it absolutely breaks my heart to think of, so I try not to think of it at all. Endometriosis makes me feel abnormal, cumbersome, weak and a failure. BUT, the community of fellow Endo Sisters I’ve seen online makes me feel like I am more than that. That I belong and that I can get through this. Bless you all.
Day 11 – Food
Me and food have a love hate relationship thanks to Endometriosis. I’ve had to go through so many diets to try and regulate my pain and symptoms, like the Fodmap diet and eating gluten free. I was even told I was intolerant to dairy. Cutting out all of these foods would help with my pain but they are extremely difficult to follow as they are so limiting. For some bizarre reason, in the past few months I’ve been able to start eating gluten again without any adverse affects, but I still can’t stomach too much dairy. I’ve been celebrating all weekend because for the first time in years I was able to drink a whole milkshake without dying. Go me.
Day 12 – Something possitive
Someone who has been by my side since before the beginning of my Endo journey is my fiancé Brian. He has been so patient and has stood by my side through my diagnosis. He’s held my hand through the bad days and taken care of me after my operations. He’s been my shoulder to cry on, my rock and my best friend for over 5 years and for that I am so so grateful. Thank you for all of the hot water bottles, the chocolate, the cuddles, the Netflix binges, the painkillers and everything that comes with caring for someone with Endometriosis. Even though it’s still two years away I can’t wait to marry the love of my life. Thank you for everything love.
Day 13 – In my handbag
Two staples of my handbag are painkillers and tampons or pads. Another is chocolate! Pain can strike at anytime so I have a near constant stock on Ponstan on hand to help ease the pain. The chocolate is for the dizziness and hot flashes that come with Endometriosis; I get them every day and they’re a nightmare. I always keep my diary with me to take note of my pain levels, bleeding, etc. so I can let the doctor know about any changes. I have so many hospital appointments that a book to keep me company is a must, my current read is ‘A Clockwork Orange’ by Anthony Burgess and it’s amazing.
Day 14 – Endo fact
A lack of awareness and ‘normalisation’ of symptoms means it can take an awful long time for Endometriosis to be diagnosed. It’s estimated that it can take up to 10 years for a woman in the UK to be diagnosed, which is insane. Within that time Endometriosis can wreak havoc on a woman’s social life, sex life, relationships and work. It can cause excruciating pain and through scar tissue and lesions it can cause organs to fuse together, and through all of this time a woman will be told that it’s just IBS or a painful period. We need to raise as much awareness on Endometriosis as we can so that women can get the help that they so deserve quicker. Thankfully I was diagnosed within 2 years thanks to my parents watching a programme called “Embarrassing Bodies.’ My mother recognised the similarities to my symptoms, wrote down the name ‘Endotitiosis’ and sent me straight to the GP. If it weren’t for that I would probably still be doubled over in pain and not knowing why.
Day 15 – Favourite place
This one was difficult, as I don’t have a favourite place. I was going to answer that my favourite place is at home, with Brian and my family and my dog, but because of my Endometriosis I spend so much time there. How do I know I’m not just saying that because I spend so much time there? Truthfully, I’m most happy when I’m travelling and constantly moving. My favourite place is in exploration – new sights and sounds and beginnings. Because it’s an adventure where illness takes the back seat. Travelling makes me feel healthy and vibrant and ready to take on anything, a different and better version of me.