Endometriosis impacts approximately 1.5 million people worldwide. Endometriosis is a condition where tissue similar to the lining of the womb grows in other places, such as the ovaries and fallopian tubes. Endometriosis can affect women of any age, including teenagers. The cause of endometriosis us not known and it can take a long time for women to get the right diagnosis because the symptoms of this condition are similar to many other conditions. The reason it is so important for us to spread awareness is because more research is needed to find better treatments for endometriosis.
This Endometriosis Awareness Week, Jasmine has shared her story with us to help raise awareness and drive positive change for people living with endometriosis. By speaking and sharing each others stories we can help break down taboos, change attitudes towards menstrual health and campaign for change.
“Hi, my name is Jas, and this is my story on how I was diagnosed with Stage 3 Endometriosis. My first realization of something not being right within my body was when I was 11 years old. I had gotten my first period randomly one day at school, being so young I thought it would be a basic period; bleed for a few days and then that’s it. Little did I think it was going to last up to around three months long. I remember bleeding on and off constantly for that period of time. I went to my mum not knowing if it was normal or not, I was to then find out that it wasn’t and that I would need medical advice on what to do.
The first time I went to a GP appointment was the first time I was recommended to try contraception. Being only 11 years old my mum said no, so we hoped that as I got older, my period would eventually regulate itself. A few years had gone by, of my period being extremely irregular, heavy, but also very painful; seeking medical help was always the same. I was told time and time again to go on contraception. However, because I was still so young, my parents were still very much against it. As more time went on, I started noticing food aversions, specifically to dairy, chicken and even lamb. It was all very odd because I had never experienced food aversions like this before. I would eat these foods and feel instantly nauseous. Sometimes even the smell of it would make me feel horribly ill! Unless I was extremely sick for a few days, I’d always go back to eating these foods. It was the fact that I had to stop eating these foods altogether because my body just could not tolerate the lasting effects after I ate them. I would end up in stomach cramps, sometimes just intense pain, but, I had never been allergic to any types of foods. I even went and got allergy tested for these foods and most doctors were confused as I had no results showing that I was allergic. It never made any sense to me in the beginning!
It had then gotten to the point where I was around 15-16 years old, and nothing had changed with my cycle. I was getting my period for 3 days, then it would stop for a day, come back again for a week and then show up again after a couple days. It was becoming stressful on my body. I was missing out on SO much school from being so unwell, nauseous, in a lot of pain, but also the feeling of not knowing what was wrong with me was my number thought. It was making me depressed and anxious at such a young age so I knew I had to eventually try anything to see if it would help. I one day said to my parents that I understood their views on contraception, especially with me being so young, but I had to try anything to see if it would help me. So, I told them (I specifically didn’t ask) that I was going on contraception because I needed to fix this issue that had been going on for 5-6 years at this point.
I was then trialling MANY different brands of contraception pill; immediately I noticed that nothing was changing. A couple years went by when to where I met my current partner, Matthew, and was advised to try the ROD, however, this was the worst form of contraception I had EVER tried. I was bleeding out every day, my skin broke out horribly, and I was having a lot of bowel issues (more than I was already experiencing anyways). After 9-10 months, Matt and I had discussed that removing the ROD was the best choice for the situation. Yes, we were sexually active, however we were always safe, and knowing that we were always safe, for us, showed no need to be on contraception such as this when it was having negative effects on my body. I finally took a chance to see a women’s GP. I had never made that jump as I always assumed they’d be the same as all the others I had seen in the past. Little did I know this would be the best choice for me.
Instantly my doctor noticed an unhealthy pattern, and immediately referred me to a gynaecologist. I saw this specialist within a few weeks, and straight away he had also noticed an unhealthy pattern and asked that I had a few scans and blood tests done to narrow down the cause of my suffering. I had blood tests done within the next week, and had my first ever internal ultrasound done, which showed limited movement to my reproductive organs, however my blood results were quite normal which was good news. From this appointment, I was asked to book in a Laparoscopic Surgery, which we had discussed would narrow out a chronic illness called Endometriosis. My specialist was very certain that I had been suffering with Endometriosis since I was younger, however, explained that this illness is very overlooked in the medical system, so this was the reason for me not ever hearing of it when I was younger. He explained that a lot of medical professionals think you cannot be diagnosed as a teenager, however he had found some extreme cases of Endometriosis in some of his patients as young as the age of 14.
Hearing this opened my eyes to a whole other world of issues. I didn’t know much of what Endometriosis was, however hearing it, and how he thought he was more than certain I had it, made me feel a slight sigh of relief as I had never even gotten to the point of getting some type of diagnosis. Not knowing the wait time for surgery was quite nerve racking for me. I was having my procedure done through the peak of COVID, so I had no idea how this was all going to roll over. I booked in my surgery for around three weeks later, and I’ll tell you, I had never been so nervous for a surgery in my life. The day finally came around, and I had so much running through my head.
What would happen if they didn’t find anything during my procedure?
If they don’t find Endometriosis, what else could the issue possible be?
Is it even worth having this surgery done?
As this was the peak of covid, I had to go into the hospital alone. I had no support from Matt, my mum, or any friends because of the new capacity rules for hospitals. Hospitals had always made me nervous, so going in alone was a big step for me. I went into the operating room with high hopes, but also, in the back of my mind, didn’t want to get my hopes up. I had been waiting for this moment for nearly half my life, so this was something that I really needed a positive outcome from. A couple hours went by, and I had woken up in so much discomfort. The recovery space was packed as I had woken up, so it was quite overwhelming seeing everything from my point of view. I was still coming out of a deep sleep from the anaesthetic, on top of that I was getting regular pumps of pain relief through my IV, and on top of that I was being seen by around 4 recovery nurses as my blood pressure was dropping quite low. From here, I had come to a bit more, and was then wheeled off to my room, I was told that Matt had been at the hospital waiting for me for a few hours, however due to new visiting hours from COVID, he had to leave. I thankfully had a small appetite after my surgery, so I was given something to eat, and in the meantime, I was seen by my specialist post-surgery.
He explained that what he had found was Stage 3 Endometriosis, not as much as he thought he would find, but it was still there and was happy that he could remove what was found. From here we had an important discussion of what my life would look like from now on. He explained that regardless of him removing the Endo, it doesn’t mean it is cured. He went on to tell me that there is no cure for Endometriosis, and unfortunately there is a chance of it growing back overtime. I was then told where my Endometriosis was found, he explained that he found it on my uterus, both fallopian tubes and ovaries. He then continued to say that my chances at fertility were quite slim. I knew from the start, when I had first heard of Endo, that sometimes those who suffer from it cannot conceive, my specialist made it clear to me that it wasn’t always the case, but he didn’t want to not tell me, and then me find out later in life that I can’t fall pregnant.
From here, my recovery began! It was around 3 months to feel completely like myself again. I was constantly bloated, had no appetite, but was VERY constipated from having so much medication and not eating from having no appetite. Water and any other drink were my best friends during this time. I hardly ate, and looking back at it, I realise that not only did I not have an appetite, but I was quite stressed and depressed from the whole experience so that played a big part in me not eating.
Fast forward to now, I have gone through big life steps to get to where I am now. Three years later, and I’ve gone through what most people go through once they’ve been diagnosed. Being told:
“It’s all in your head”
“Your pain isn’t real”
“You use your health as an excuse”
Or having to: Find a new specialist for a second or third opinion or go in and out of hospital for pain management, even though they don’t ever do too much to help you. A lot of those around us don’t realise that Endometriosis plays a BIG part in our everyday lives…We can experience pain everyday if we’re “lucky”. We have constant symptoms; we take meds upon meds upon meds upon meds and still experience some of the worst pain and discomfort ever. One thing I’ve realised is not a lot of people know what Endo entails, there’s many layers to it, and it can be SO confusing. I still struggle to understand it at times, but it’s important that those around you understand it as much as possible to know how to help you.
Matt and I are now at the stage in our relationship where we have been trying to conceive. We’ve been trying for 14 months (Coming up to 15 months). It has been one of the most: hard and tiring experiences of my life. I’m now on a waiting list to receive my second surgery for further treatment (I’ve been on the waiting list for nearly a whole year) and it’s been a big eye opener to how much Endo can affect your life after diagnosis. Just about everything I do references back to my condition. Having to miss out on work, social events, schooling. It’s all because of my health, and sometimes those around you can end up being judgmental. Going through infertility has taught me a lot but has also been a lot to go through for Matt and me as a couple. IVF may end up being the route we take to be able to have a family, it’s something that many couples out there go through daily. We knew that this TTC journey was going to be difficult, however unless you’re in the moment, you’ll never realise how much of a toll it truly takes on you individually, but also as a couple.
Fighting for myself, after all those years has been a stressful, yet relieving time. It was a lot to go through not having any medical professionals believe what I was saying, or not even wanting to help me through my pain and suffering. Endometriosis is very real and isn’t something I’d wish upon ANYONE. If you are going through pain, and medical professionals do not want to help you, please keep fighting to be heard. I understand how hard and exhausting it is, but it got me to where I am today. It led me to answers, but more importantly a diagnosis. And without any of that I wouldn’t be able to help myself in any way. I’ve learnt more about Endometriosis through social media rather than medical professionals. This community is such a loving and supportive system to be involved in. Speaking to many others from all around the world is one of the best things that has happened to me, so I highly recommend reaching out to those online who are going through similar things as you! There are also medical professionals out there that want to help, you just unfortunately must go searching for them.”
Thankyou for sharing your story Jasmine.
If you need further support, the Samaritans provide emotional support 24 hours a day. You can call them for free on 116 123 for support with how you are feeling.
The NHS24 on 111 also provides urgent care and advice when your GP is closed, and you can speak to the crisis intervention team.