My endometriosis journey first started when I was around 14 years old in 2012. This is around the time when I started to get extremely bad period pains and heavy bleeding but whenever I spoke to anyone about it, I was told it was ‘normal’. I went YEARS believing this. I had never heard or was never told about endometriosis so I was none the wiser. I was simply put on the contraceptive pill to attempt to mask my symptoms and sent on my way.
I dealt with these bad periods for years, I had time off school due to the pain, then time off college and then time off work. I missed social events and became extremely depressed to the point I even became suicidal as I thought dying would be less painful than living with the pain I was suffering from.
In 2018 I decided to come off the contraceptive pill and try to get my body back to a regular cycle and see if stopping hormonal treatments would help with my pain.
In 2020 my cycles started to become more regular however the pain was getting worse and worse. By this point, I was having pain in my pelvic area every day however, when I was on my period this pain was even worse. I was throwing up and passing out because my body physically couldn’t cope with the excruciating pain I was suffering from. This is when I realised it was NOT normal and I began pushing more with my doctors for tests.
I had my first external ultrasound on my pelvic area that same year which showed nothing and so I was then told again, there was nothing the doctors could do for me. I felt like I was right back at the start again and was beginning to wonder if I really was just overreacting with my pain.
However, something inside me knew that this wasn’t normal and so I asked to be referred to a gynaecologist instead. I was then told by my doctor that she would not refer me unless I tried the copper coil (IUD) first. I was absolutely raging with this. I sat in the doctor’s office thinking “Why should I have to have something I don’t want in my body, in order to get professional help?”. Of course, I refused and just pushed for the referral anyway.
I am now 26 years old and it took 4 different doctors and 3 long years of appointments, tears, depression and pain before I finally got my first appointment with a gynaecologist on 3rd February 2023.
I remember this appointment like it was yesterday. I lay down on the bed in the room, the gynaecologist took one look inside of my vagina and said “Everything looks normal”. I was heartbroken! Not because I wanted to have endometriosis, but because I wanted answers and to not feel crazy anymore!
The gynaecologist then said she’d send me for a transvaginal ultrasound (internal) anyway just to be sure there was nothing going on.
Again, I lay on the bed, nervous and praying I would get answers and there it was. As clear as day on the screen, a large endometrioma (chocolate cyst) stuck to my left ovary. I FINALLY had answers and was diagnosed with Endometriosis.
I got back in my car after my appointment and sat there alone, crying. Crying with relief but also heartache. I knew all the problems that came with endometriosis and every single one was going through my head all at once. The worries about my career, surgeries, infertility, everything.
After my diagnosis things started to go downhill with my endometriosis very quickly and I was admitted to hospital twice due to concerns that my cyst had ruptured. Thankfully it hadn’t however because of the pain I was in, I was finally put on the surgery wait list in August 2023 and was given 12th October 2023 as my surgery date.
The last few weeks leading up to my surgery were horrendous and I was in agonising pain. I had to give up my active career role and instead work from home, I wore heat pads constantly resulting in my skin being burnt and was taking pain medication every day to try and feel some relief.
My surgery date came around and I was extremely nervous. My surgeon came to speak with me and told me it would be around an hour surgery and she was hopeful it would all go smoothly. I was then taken to theatre and the surgery began.
The next thing I remember was waking up in a LOT of pain with an abdominal drain still coming out of me and I immediately started crying. I asked the hospital to call my mum and when they let me speak to her she told me I had been in surgery for 5 hours! I was still completely out of it on medication but I just remember wondering what on earth had gone on in my surgery.
I was initially supposed to be going home the same day but was told that due to complications during my surgery, I would be staying overnight. However, I wasn’t told what these complications were and so I was extremely worried and didn’t even know if I still had my left ovary or not.
It remained this way for the next 2 days but eventually I was told that my left ovary had not been removed however, had been completely reconstructed and I also had a lot of organs stuck together due to adhesions. This was all I was really told before I was discharged.
I then had my follow up appointment over a month later and my surgeon said she had cut apart the organs stuck together and removed my endometrioma, however as the endometriosis was so severe she was not qualified enough to deal with it and so I have been left with it still covering my organs and will need to see an endometriosis specialist at a different hospital instead. She then told me that the specialist “Wouldn’t touch me anyway for a while as I’ve only just had a surgery”.
I was absolutely devastated. I was so hopeful for this surgery to end some of my pain and yet it has ended none of it. I am still left with the stabbing, burning, twisting and pulling pains every day, as well as the ’endo belly’ bloating.
I wanted more answers and so I requested my medical notes which I got in January this year. These explained that my endometrioma ruptured during the surgery and my ovaries, bowel, uterus, pelvic sidewall, pouch of douglas and uterosacrals were all stuck together. My left fallopian tube was also twisted around the endometrioma and my Pouch of Douglas was obliterated. They also could not identify my left ureter and so had to place a temporary stent in.
Reading all of this was so overwhelming but also extremely validating! I now know what was and still is causing such extreme pain and this is where I am at now. Living with the pain and waiting for my second surgery with an endometriosis specialist. I am now also classed as disabled and I use a walking stick to support me due to my pain which I am beyond grateful for as I wouldn’t be able to get around without it on the bad days now.
When I look back on my journey with endometriosis, I’m so proud of myself for how far I have come. I truly have become so much stronger having dealt with this for so long now. My body has been through so much and every single time I have come back fighting. My mental health has also improved and I have realised that I can get through all of the bad days and I am allowed to enjoy the good days even if they are few and far between.
My endometriosis journey has been a long and difficult one so far and i’m sure i’ll face plenty more hurdles in the future but i’m hopeful that the future will change and people with endometriosis will be taken more seriously.
How is your support system? Do you feel supported? Do you feel that your family and friends try to understand and support you?
My boyfriend is the most supportive person I know! He helps me so much and I couldn’t go through this without him! My family and friends have also been amazing and really helped me through this whole journey!
How is the quality of your medical care now? Have you found that medical professionals that you trust? Or are you still searching?
Every time I find a doctor that I think I can trust, they turn out to be unsupportive so I have that much medical trauma now that I struggle to trust any health professional. I’m trying to stay hopeful that I will find a good one some day though!
Are there areas (relationships, work, hobbies) that have been particularly affected by endo?
My work has been affected as I had to give up my job as I can no longer be active like I once was and so I am now looking for a permanent career that is flexible and allows me to work from home during my bad days. I also cannot go to the gym or workout like I used to.
What strategies or treatments have been effective in managing your pain? Are there specific activities or lifestyle changes that have helped to alleviate symptoms?
Pain relief medication has helped mask my symptoms a lot and also using heat pads and tens machines. I also allow my body to rest when I feel like it needs to now.
What strategies or treatments have NOT been effective in managing your pain? Are there specific activities or lifestyle changes that you've made that didn't help to alleviate symptoms?
Surgery has not really helped me so far due to it not being successful. Over the counter medication has also not been helpful for me which is why I require prescribed medication for my pain. I also cannot go out with friends to parties anymore or drink alcohol as much as I used to as this causes a flare up for me.
What do you wish you knew earlier in your journey?
To go to an endometriosis specialist rather than a regular gynaecologist. I also wish I knew about endometriosis earlier so I could have pushed for a diagnosis years earlier than I did.
Have you found the endo community to be helpful throughout your journey? What does community mean to you?
The Endo community has been amazing for me! Its helped me learn things about endo and my body and also helped me to not feel so alone. None of my friends or family have endo so to speak to those who do really helps me as we have a mutual understanding of what it is like to live with it.
Are there any misconceptions about endometriosis that you've encountered?
That its ‘just a bad period’ when it is absolutely not! It is a life changing condition that effects my life every single day!
What advice would you give to someone who suspects they may have endometriosis? Is there any guidance you would offer to those recently diagnosed or struggling with their journey?
Push to see a specialist and don’t take no for an answer! With this condition you really do have to be your own advocate! Its hard and can be a long process but getting the support and help that you deserve is worth it all!