Hello, my name is Natalie and I am 21 years old. I was diagnosed with something called Endometriosis at 18. Now I think a lot of you will be sat there thinking what on earth is that word I can’t even say, but don’t worry I’m here to tell you.
Endometriosis is a chronic condition where tissue resembling the lining of the uterus grows outside of the uterus attaching itself to predominantly pelvic organs (but can be others too) causing scarring, lesions, adhesions, and cysts. Like the womb lining, tissue builds up every month then bleeds. However, unlike a period, there is no way for the blood to escape. The build-up of trapped blood can result in internal lesions and scar tissue. This sounds a little daunting… mainly because it is. However, many people are misled that this is a rare condition. It’s not. 1 in 10 women has Endometriosis. It’s as common as diabetes but doesn’t have the same funding for research. Many of the symptoms you experience when you have endometriosis are explained away as a normal period. Sadly because a woman’s pain is mainly bypassed/rarely picked up on or taken seriously.
Symptoms you normally experience with Endometriosis are painful periods, heavy and sporadic bleeding, severe cramping, bloating, pain during ovulation, pain during or after intercourse, and sometimes pain when urinating or having a bowel movement. The repetition of the word pain was key there, as it’s just a constant for a lot of people with Endometriosis no matter the severity of your case, but each case is on a case by case basis. Not everyone will experience the same symptoms.
Yes, this does make the condition harder to recognise at first but I want to give confidence to anyone reading this that YOU KNOW YOU BEST. You know when something doesn’t feel quite right with yourself and urge you to keep persistent in going back and finding answers. If one doctor gives you the impression they aren’t truly listening to you, please do what’s best for yourself and actively search for another opinion, and read/do research for yourself (both positive and negative) to truly gauge how YOU feel about it. YOU are the most important in this situation.
This condition can affect your day-to-day life; sometimes you may feel so drained you can’t even move to go brush your teeth in the morning. You can’t fathom going anywhere or doing anything without your hot water bottle stuffed down your trousers. Canceling plans because you can’t actually walk or do fun activities and then feeling the burden of judgement. Buying lots of comfies with elasticated waistbands so you can try to be comfortable with the false pregnancy bloat. Or sometimes just no waistband at all because it too uncomfortable. Buying clothes in general for the fluctuations of weight/bloat. Constantly buying pads and tampons and carrying them with you wherever you go because you never know when it’s going to come (including incontinence pads too because bladder control has become a bit of an issue, whoever knew sneezing would be so risky). Your water bill may go up with the number of baths you have… oh and trying to get employers to understand it’s not just a bad period is a battle you may never win.
It’s important to remember your condition doesn’t just affect you, but the people around you as well. It’s important to acknowledge it and not ignore how you feel both physically and mentally. The challenge comes in accepting and appreciating them both equally.
So to tell you all a little bit of my story as I said I was diagnosed at 18 but this process was not simple… For the best part of the past 12 years of my life, I have suffered from pelvic and menstrual pain. I started my period at 9 years old and was told that the pain I experienced was normal’ (I mean what on earth is normal) and that I should just get used to it.
Across those 12 years, I took many trips to the doctors, had various examinations, tests, re-tests, and treatments. I was treated like a hypochondriac and patronised because of my age. Not until I was 17 where my pain was becoming unbearable was it taken a little more seriously. Nobody before that would believe me when I was describing my pain; the relentless cramping, constantly feeling uncomfortable, nauseous, having bladder issues and bleeding excessively sometimes two or three times a month, and feeling like I was carrying around two bowling balls for ovaries.
At 17, they decided to do a little more extensive testing because of the pain I was in and I had my first internal ultrasound. Where it was discovered I had an ectopic pregnancy of possibly eight to twelve weeks. This would have been found earlier if my pain was taken more seriously, but I had come to believe that this amount of pain was ‘normal’. The reason it happened was likely due to something else going on within my body and its functions so they decided to do further investigation. Fast forward six months later and I had my first laparoscopy (keyhole surgery) at 18, where I was officially diagnosed with Endometriosis (as this is the only official way to be diagnosed with Endo).
Finally, I knew what I was experiencing was real. There was a reason and it wasn’t my fault. I was elated I finally had an answer but was unexpectedly hit with this overwhelming dread that I would carry this chronic condition for the rest of my life…
With this being diagnosed and dealt with (or so I naively thought) I still decided to continue my dream and follow a contemporary dance degree at Bath Spa University; I felt very lucky to be gifted this new lease of life and was so elated to be dancing and moving again. All was going swell until near the end of my first year where the pill (Cerelle) that I had been put on stopped working for me and I bled heavily and continuously for a month and was advised to come off of it. Then was left with really no other alternatives because the pill combined pill (Lucette) I was on before didn’t agree well with me.
So I started my second year feeling my symptoms returning and worsening as time went on. Until I had a uterine prolapse in the middle of class which was one of the most traumatising experiences of my life. Obviously, I had this looked into and was told to wait and just see how things would be in a few months, but through looking at my insides through the ultrasound wand and discussion with doctors I was told I also had a condition called PCOS and my ovaries were covered entirely in empty egg sacks (that’s why it felt like I was carrying around two bowling balls).
Polycystic Ovarian Syndrome is a condition that affects how the ovaries work. The main symptoms of PCOS include irregular periods, facial hair (excessive hair growth), and difficulty getting pregnant. The main treatment for polycystic ovarian syndrome are treatments for things like hair growth and irregular periods (usually some form of hormone treatment) and trying to keeping a healthy weight also helps, but this is hard when the condition makes it hard to lose weight you put on. It’s not clear what causes polycystic ovary syndrome, but it’s thought to be linked to hormone problems (feels like round and round in circles I know).
Things from here just went from bad to worse. Lockdown happened, the pandemic hit. It was a blessing and a curse.
I was able to be at home trying to complete the second year of my practical degree (which was frustrating) but also a blessing. This time at home allowed me to be able to try and manage my symptoms and my pain. Through the use of wheat bags and heat patches, I was able to keep swelling down, and through having many many baths, which took the pressure of the pain away, I was able to cope. And I completed my second year.
I didn’t realise how mentally taxing this whole experience would be, and it all came crashing down. It was like sharing my body with another person but it was the pain. Both physically and mentally a lot was shifting and changing and it was hard to cope and adapt. My entire body changed, my hormones would fluctuate all the time and it was hard to assess how I felt apart from tired, ashamed, and just let down that my body wasn’t once what it was. The comparison does nobody a favour, remember that.
I knew I wanted to turn this all around before I started my third year (as the lockdown was lifting) so, I got in contact with wellbeing services at my university and actually spoke to someone about how I felt. I didn’t think it would help as much as it did, but it really did. Just talking to a stranger outside of the circle so you didn’t feel like you were repeating yourself or judged was such a euphoric feeling and exactly what I needed.
So roll around to the third year and I went back with a changed mindset which felt great, but hadn’t articulated my body hadn’t been on the same journey … November of 2020 (the end of semester 1) and I found myself back in a gynaecology ward waiting for another appointment.
Where in which was told I was to be put back on a waiting list for surgery again and it was discussed that my uterus would be stitched back up to the position it was meant to be, detach my uterus from my bladder (as it had been fused by adhesions from endometriosis) and get rid of all the endometriosis that had grown. Next to insert the marina coil to help control my hormones and periods (control the rate of growth) and then I will be having hormonal treatment on top of that, where each month/every 3 months my ovaries will be injected with a hormone suppressor, so my body will no longer produce estrogen. I will hopefully no longer have periods and my Endometriosis will grow at a much slower rate.
Come the age of 22, I shall be a menopausal woman. This is something I still haven’t figured out how to feel about. On one hand, I will be ever so thankful I will have had things dealt with and hopefully will be feeling a lot better within myself, but on the other, my future has had to
change so much and I’m uncertain how long it will take for my body to settle and feel alright. I’m nervous about what’s ahead but also excited. It is just very confusing.
I am writing this currently in my last and final semester at university trying to get to the end of my practical course, it’s going well but I wouldn’t be here worth the support of everyone around me.
It’s only because I’ve kept people in the know as to what’s been going on that I’ve been able to be in this position. At first, I was extremely nervous about approaching my lecturers because I was thinking ‘how on earth do I explain there is a weird tissue growing on my reproductive organs, that it’s not entirely known what it is but it’s there and it’s causing me a lot of pain’ – I was worried they wouldn’t believe me as its not something you can see. But truth be told, I was worrying about nothing.
Through all the experiences growing up and throughout different stages of my life; I found the more I was open with people the more they were willing to be understanding and wanting to help. So that’s my most important piece of advice to anyone in terms of this stupidly ‘taboo’ subject of periods. TALK. Talk to friends and family and gauge for yourself what’s normal to feel and what isn’t. If that’s not possible or you don’t feel confident or comfortable then please go to social media and search for pages about periods and just look for information and try to
educate yourself.
Unfortunately, the current system doesn’t support younger females and what to look out for at a young age – it doesn’t encourage talking about a natural process openly. I don’t know about you but I desperately want this to change. Most people say they are just popping off to the loo for a wee… that’s a natural process and not frowned upon. So why should a period be? Why at school at a young age are you told you can’t go to the toilet and are forced to say you need to because of your period. Then further made ashamed by having to hide pads and tampons or cups. Why? They are necessary!!!
Our period is a natural process that happens to us and should actually be celebrated. Our bodies are capable of doing something amazing and we should support this. I believe that through this support we could change a lot.
Through openly talking about your experiences to those around you, you may be able to educate someone or have your questions answered. Always remember, KNOWLEDGE IS POWER. If you take away anything from reading this article, I just encourage you to go research that thing you’ve always wondered, ask someone how they feel, or offer support to anyone going through a tough time with change and pain from your body. Go and find social media pages (like mine @_unacknoeledged_uterus on Instagram) to educate yourself. Just be mindful and kind because you never know what someone battles through each and every day.
I’m such a huge advocate for creating change and spreading awareness because I think this information should be accessible to all. From my experience, if I knew what I know now, I wouldn’t have had to go through some of the hardships I did. Although I’m grateful for how it has shaped me, I wouldn’t want anyone to go through the same. I want everyone to have a positive experience and to be listened to when they think somethings wrong and then to have the right treatments suggested and discussed. This also will allow conditions as common as Endometriosis to be properly funding and research for better treatments to become available. Through sharing a drawing awareness we allow change to happen for the future and are then able to offer support and knowledge for everyone to look after themselves and feel comfortable and confident within their body.
Sending positivity and love,
Nat x
Check out Nat’s Instagram page to learn more, or to follow her journey! @_unacknowledged_uterus