"Not Many People Could Face What We Face Every Single Day": Talking Endo with Freya
By Freya Richards
Freya is one half of dynamic duo @thoseendosisters on Instagram, an account dedicated endometriosis and IC awareness, education and support that she and her sister Niamh started after both being diagnosed with endometriosis. Despite experiencing suspicious and ultimately painful symptoms from a young age, Freya found herself struggling to convince GPs of the seriousness of her symptoms, and as a result went without a diagnosis for years. At 21, newly diagnosed with endometriosis, she is passionate about advocacy and education, and is one of the many voices calling for change in the United Kingdom, where the diagnostic delay for endometriosis remains even greater than that of Australia. In this blog, Freya shares her story and how she now manages her condition, in the hopes that others will feel empowered to speak up when something doesn’t feel right.
It was 2019 when I sat in my GP appointment, where I had just asked “so what happens about my pelvic pain?” and my doctor looked at me and shrugged her shoulders, that I knew I had to look elsewhere to find some answers...
Where it first started:
My name is Freya, I’m 21 years old and I have been experiencing endometriosis pain since I was 15. I first had my period when I was 11. I don’t remember it being particularly painful, I just remember it being heavy and irregular. When I got to year 9 in secondary school (UK based which means I would’ve been 13/14 years old) I started to notice that my periods were happening every 3-4 months and they would last 2-3 weeks. They were so heavy, when I stood up from my R.E (religious education) exam, I had to immediately sit back down. I had leaked through my skirt onto the chair. It was the most embarrassing thing I ever experienced as a teenager. I didn’t tell my friends because I knew I’d get picked on and I didn’t tell my mum or sister because I was scared of what they’d say! I then went to the doctors when I was 15 to ask about my periods and I just felt ‘weird’ that’s the only way I can explain it! When I went to the doctors I explained my irregular periods and that was it. I didn’t realise already that I had subtle symptoms of endometriosis, in fact, I wasn’t even asked about any other symptoms. The appointment resulted in my GP suggesting I may have PCOS or hypothyroidism. She tested me for both through blood tests, and continued to tell me that I could go on the pill but let’s wait a few more months to see if my periods settled (sounds ridiculous now when I had been menstruating for 4 years ??). She then persisted to tell me, AS A 15 YEAR OLD, that I may have to come back to the doctors when I want to have children because I’m also not ovulating enough. The conversation wasn’t about children, it was about me wanting to find out why periods were so irregular.
The exacerbation of my symptoms
So, fast forward to university in 2018 (I was 18 here). I decided I was going to take myself to the GP again. I was going to go on the contraceptive pill as I was already sexually active by this point. I had also now been experiencing pain during sex (if any of you have experienced this, isn’t it the most horrendous thing? I think it really does give you some form of fear towards sex afterwards. Some days I really get anxious just thinking about having sex in certain positions!). I was also experiencing chronic pelvic pain, which on reflection, started when I was 15. It hurt to even put a tampon in, it felt like my vagina was aching constantly. Going to the toilet was an awful experience, I would getting shooting pains through my anus, I think I would get a normal stool every 6 weeks! I only realised this wasn’t normal when me and my room mate were comparing how much toilet roll we used! Let’s just say mine was double hers! I was bloating horrendously everyday and I just felt swollen. It wasn’t until I had my first period being at university that I thought something wasn’t right. When you live with people there really is no hiding away from things. My new friends could go to the gym on their period, go out in town on their period and still fit into their clothes on their period! However, my first period at university left me bed bound for 4 days. I had no energy. I honestly couldn’t bring myself to go to the toilet that was in my uni room!
Seeing a new GP:
After this experience, I took myself to the GP to ask about my bloating and pelvic pain. I was diagnosed with IBS in October 2018 and asked to cut out gluten and dairy and if I “needed anything, just come back”. Ok that’s fine, I felt satisfied, maybe this would help. One month after cutting out gluten and dairy I wasn’t bloating as much, I had more energy, less headaches. I do think I have an intolerance to gluten and dairy however it didn’t solve anything. She also referred me to have an ultrasound where they said they couldn’t find anything. For the whole of 2019, I struggled, I slowly got worse with my symptoms and my ability to do anything. I would go to the gym and I couldn’t do any form of ab workout without being in pain. Every time I had flared up (thinking it was IBS) I didn’t really take it seriously, due to my IBS diagnosis, I just took it as “oh well I shouldn’t have eaten that pizza”. And I thought the pelvic pain was normal! I remember asking people who had IBS whether they experienced pelvic pain and nobody said they did!
Fast forward to November 2019, I started bleeding everyday. This lasted for 4-5 months straight. My symptoms had changed, with some lessened because of gluten and dairy.
Now in February 2020 off I go, plodding back to the GP feeling like I had munchausens’! I had pelvic pain, fatigue, bloating, bleeding everyday, pain during sex still. I just felt awful. No one was listening to me and I was fed up of hearing “it’s just your pill”. I now saw another doctor who was a better listener, but not amazing. I explained all my symptoms and said both my sister and mum have endometriosis (my sister was going through her diagnosis at this point so she had educated me on what it was and the symptoms). I had my bloods done. She decided to do an internal examination. However she could not see anything as I was bleeding. So I was sent home and took some tablets to stop me bleeding. They didn’t work as well as they should but I was able to have an internal examination. She said my cervix looked fine and that I had cervical ectropion (where more red blood cells are on the cervix, which may explain why I was bleeding constantly bleeding and after sex). I mean, I didn’t really buy it if I’m honest but there we are! I then proceeded to ask “so what happens about my pelvic pain?” and my doctor looked at me and shrugged her shoulders, that I knew I had to look elsewhere to find some answers...
Going private for my healthcare:
I came home March 2020 from university to go on holiday to Amsterdam, but then we couldn’t go because of coronavirus. But, it did enable me to spend more time with my sister who was experiencing a horrendous flare up. She educated me more and more on endometriosis whilst waiting for her appointment for her laparoscopy. I was apprehensive for a long time but my symptoms were getting worse and getting closer together. I started having an endo belly for 2-4 times a week! Now I couldn’t fit into any of my clothes without it hurting my swollen stomach. So I thought, what harm could it do having a telephone consultation?
The day of my consultation, I bought my notes out and prepared everything I wanted to say using the endometriosis.uk pain diary (In Australia you can use the QENDO App, which we’re working on making available in the UK very soon). My phone call lasted 20 minutes and he had booked me in for laparoscopy! I was very overwhelmed! I started to doubt all my symptoms. Maybe it was IBS after all? Maybe I was just overreacting this whole time? It was a horrible feeling! My sister kept assuring me that I’m most likely had it. I had my laparoscopy August 6th 2020. It lasted around an hour. I woke up from my surgery with a diagnosis. What a relief!
My diagnosis:
I had endometriosis on my pouch of Douglas, pelvic area and the endometriosis had stuck my bowel to my muscles so my bowel was reshaped. I was also told that my bladder was very sensitive and if I carried on the way I did with my acidic diet, then I could develop interstitial cystitis. My surgeon Mr Griffiths, excised all of my endometriosis and put in the Mirena coil (this is standard). I was off work for 2 weeks, the gas pain was horrible, I was extremely tired. The fatigue lasted for 2 months after my operation because of all the hormonal changes and the recovery!
Fact checking for my symptoms:
I just wanted to fact check my symptoms incase anyone is reading this and wondering why I had those certain things!
So I’m not entirely sure how or why endometriosis causes heavy bleeding, but it is a symptom! My pelvic pain was due to having endometriosis on my pelvis. My pain during sex was from my endometriosis growing in my Pouch of Douglas. My fatigue again is a symptom of endometriosis, I get extremely tired after a flare up (if I flare up at 5pm I would’ve passed out sleeping by at least 7pm) and this is because my body is fighting my insides which are inflamed. No wonder they are knackered! My symptoms in regards to my stool were because of my bowel being stuck to muscle, but it can also be part of hormonal changes during your cycle. Bleeding everyday or bleeding after I ate something inflammatory, I’m not too sure why that happened, but it was a serious symptom for me to look out for! Lower back pain also occurs when I’m inflamed. And finally, my bloated belly was in fact an endo belly!
All of these symptoms are exacerbated when I eat gluten, dairy or chocolate. When I am stressed, when I do a workout that engages my core too much. Or when I just breathe. Sometimes they just happen! It’s through no fault of our own.
My tips to help my symptoms:
Lowering the levels of gluten and dairy I eat
Lowering the red meat I eat
Doing yoga on YouTube “yoga for endometriosis” that works with your pelvic floor muscle. It may may hurt the first few times as it’ll probably be very tense from constantly being in pain. I can do it after I get pelvic pain and the pain pretty much goes.
Trying to walk everyday (I understand this isn’t feasible for everyone)
Remaining positive has helped me
Listening to my body. What is it saying? What does it need me to do?
Educating myself from other people
Having a turmeric latte (I bought mine off of Amazon), this helps my bloat as its anti inflammatory
Having hot baths
Minimising stress! This is a massive one. You really have to weigh up whether what you are stressed about it worth a flare up essentially. Try to care less about others and more about you, without being selfish of course. Organise your work. Have a routine. But also understand that everyday may not plan out the way you wanted it too. Mine certainly don’t!
Standing in front of the mirror naked with an endo belly. This helped me to love my body instead of resenting it. Yes I looked completely different. I’ve even had someone ask me if I’m pregnant. But your stomach is doing the biological thing it’s programmed to do and is fighting whatever has flared up. To me that’s pretty admirable.
Wearing clothes that are sizes too big. Finding your clothing style with things that aren’t too tight.
Stay away from tights !! They flare me up so bad!!
Learn to say no! “No, I’m sorry I can’t eat that, is there an alternative”. “No, I can’t go out tonight I’m having a flare. Have a good time anyway! Speak tomorrow”
Deep heat bubble bath when you’re in pain.
Learning what sex positions hurt you and what ones don’t. Be open and communicate. You are still sexy! You are still beautiful! Your body has just got something going on at the moment.
It is not your fault!!! Tell yourself this!! Believe this!!
If your friends and family don’t understand then educate them. If they decide they do not want to understand, then forget about them in regards to your endometriosis. Find a better support bubble. You deserve one.
Marshmallow root from Holland and Barrett (UK Store, if in Australia try your local health food store!)
Pre-relief to take out the acidity from foods and drinks so it’s kinder to your bladder
That’s all I can remember for now but I hope this may help you.
My thoughts today:
Using these techniques which have worked for me, I now don’t flare as often. Everything is more a build up. If I eat gluten everyday for a week I will flare, but if I have it once every week then I won’t flare up. I go on daily walks, I see my friends, I do my work, I feel like a normal 21 year old! There is hope and it will get better.
11 days after my surgery and a month after my sisters, we decided to start an endometriosis Instagram to raise awareness! (@thoseendosisters) It has been the best decision ever. It is so nice to feel heard. We have met some amazing people through the endometriosis community. The resilience from these women is incredible. I sometimes feel honoured to be part of this community. However, one thing we have noticed is the lack of education there is around endometriosis. We never give out medical advice, but we do redirect people in the best way. We educate with facts. It is so disheartening that in 2021 there are still people waiting over 10 years to get a diagnosis. I really don’t know where I would be 10 years down the line with my pain. But we will get there. We will educate and change the healthcare system here in the UK.
If you ever feel lonely during your diagnosis journey then please join social media and reach out to other people with endo. They really have helped me during my diagnosis and I can’t thank them enough. And to you, if you are still awaiting a diagnosis or are now post op and managing it day to day, please don’t stop advocating for endometriosis. Please don’t give up. Please don’t feel worthless or like this is your fault. You are worthy. You are strong. You are resilient. Not many people could face what we face every single day. It’s hard and extremely overwhelming, but speak to one another! Reach out, ask for that helping hand. Advocate for other women. Scream until we are heard.
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