by Luise
Before I go into my long story about how I got diagnosed and some steps I took on the way, I need to say this is my story. I know that people are different, have different experiences and I am not here to give medical advice. I just want to spread awareness and explain what I have been going through and what I decided to do, which hopefully will help someone else. I will never preach to anyone, only share my own experiences. The below story is a snapshot of what I have gone through over many years but it would be the size of a book if I share every detail, so I picked some of the most impactful memories and actions.
Whilst still being at university and working as an events manager, I felt myself change and my body reacting differently to what would be a normal period. My moods would become darker and I felt in an almost depressed state - sitting on the floor crying and having all these thoughts and not being able to communicate any of them or even the ability to explain what is going on, how can you? As you don’t even know yourself. At the age of 12, I suffered from severe periods so my gynaecologist at the time (German health care system) put me on the pill to help. When I think back how early that is to give your body hormones like that, my mind goes WOW.
Another new symptom was that I started bleeding every time we would have sex and it would become more and more painful, that situation in your early 20’s is not something you just open up about and ask other people what could it be.
After waiting to see if it just naturally improved, which it didn’t, I started seeing the GP and after stopping the pill, going on a diet… yes I was recommended to lose weight as that might help and many more crazy suggestions, I suggested that it might be something more serious. This took many appointments and refusing to go on any other pills, as they also suggested I was severely depressed to finally get an appointment at Bournemouth hospital with a gynaecologist. Again scans didn’t show up anything external or internal and it took several appointments to agree the next step would be to do a laparoscopy (small incisions into the belly button and around to put cameras into your tummy to see what is going on).
This is when they found the endometriosis and used lasers to burn it away at this stage - this is what I was told when I woke up, it wasn’t a nice experience waking up being disorientated and being treated with very little information or explanations from doctor at the time at all. The same doctor also told me at 21 years young, that I need to have children now as my chances will be 0 to none as soon as I get into my 30s and that is the only cure for my condition, when I said I was still at university, the doctor passed a comment that we all have to make sacrifices… yep that has burned so deeply into my memory and is a big part of my journey into pregnancy over 10 years later. A side comment like that with not much regard from someone you have no relation to whatsoever.
I remember being so conflicted after that, on one side, I finally had a diagnosis and knew that this horrible thing wasn’t in my head and that I actually had a severe condition but on the other side this condition completely ripped the carpet from under my feet and I had to quite quickly come to the realisation that I need to make some very important life decisions at such a young age.
Something I haven’t mentioned yet and something that on reflection happened simultaneously whilst my endometriosis was developing/progressing, as let’s be fair we have no idea; how we get it, when we get it and why we get it yet. I started to develop food allergies - the main culprit was diary and egg… And of course I was in denial that every time I had a piece of chocolate brownie with hot chocolate sauce and vanilla ice cream it made me severely sick and have diarrhoea. James had to literally beg me to stop eating it and guess what, I eventually listened and he was right, I could no longer tolerate even a tiny bit of anything that contained dairy, egg or butter. So dairy and eggs were now forever banned from my diet.
The story goes on and so does the pain as all of it was back within 6 months of my operation and I had to start the whole process again - meeting the GP - referral to hospital, this time I did some research and requested to be moved to a different hospital, to see someone who has actually done research in Endometriosis and is recognised in the South of England for it. After waiting (a long time), scans
again showed nothing but I agreed to another operation to check which found the Endometriosis had now spread to my bowel, bladder and all over my ovaries. The doctor at this stage cut it away and lasered where cutting wasn’t possible, an operation that took longer than expected due to the state of the Endo so soon after the first operation and the recovery wasn’t as easy this time around either. I was diagnosed with stage 4, which is the worst stage in Endometriosis (1-4) and again had no guarantee that it wouldn’t return any time soon.
Walking away from that and after being busy at work - I was just like this can’t be it, can it? To add to this I decided to have some investigation done on my bowel as I have bowel cancer in my family and my biological father had suffered in his 30's, so I made the decision to have this checked out - as my stomach also was not the same anymore, with now suffering from all these allergies and so many different foods triggering my bowel movements to be not consistent at all. Again after several appointments, (I did decide to go private for this, for many reasons) they had to do a colonoscopy. What an experience I can laugh about it now and I often tell this story because I am an over-sharer anyway 😆 but they pump you full of gas so they can see it all properly and I remember being wheeled back to my room and OMG could I not stop letting the gas back out. I was laughing my head off, even when calling James to come and get me I could not stop farting. I must have made a few people in the hallway uncomfortable. 😅
Anyway, I was told I have no risk at this stage and don’t have to be checked again until later in life, however they did suggest that I have IBS. With this new gained knowledge and on top of everything else I have learned and experienced along the way, it was time to now really go into the healing process. I had enough of operations- reducing chances of pregnancy, risk of long term bladder issues and and and, that I needed a break, I was done at that point like really done. I know this is not for everyone but at this stage of my life I didn’t want to go back every year for another operation to get more scar tissue and the same thing being told to me, that there is no cure and we just have to keep going.
Here comes the next part of my journey now, I decided to speak to James’s nutritionist and gave her the full story - everything that has happened - tests, operations, results and we started to work together.
It was like therapy letting it all out, and still to this point I feel sorry for her as I must have cried at every appointment for the first few months (I still blame my horrible hormone imbalance at that stage) 🤪
She put a plan together for me from food, to supplements, lifestyle choices I had to make, and one thing I have to say you either fully commit or it won’t give you the results you expect, it is and I will never lie about this a change to how you live your life but for me it wasn’t much of a life at this rate, therefore I was all in, research head on and let’s get this on the road.
After months/years of diet changes, lots of trials and errors, I started to feel like me again, I had to make some scary choices on the way but every single thing I have done and where it has led me to now- I do not regret. It takes a lot and god I cried too many times to count, but the life I have now and looking back - I truly believe that it made me who I am. And being able to share this with people and trying to support shows there is always another road to go down, it’s something I am just so truly passionate about.
I can now say I have endometriosis stage 4 - I haven’t had an operation in many many years, and I am sat here writing this being pregnant with my little miracle baby, that I was told I wasn’t able to have! We got this! Don’t give up!
Again if this is something you want to get in touch with me about or raises more questions please get in touch on Instagram.
Thank you for sharing your story. I have endometriosis, adenomiosis, IBS and coeliac disease (what a fun combination). It is empowering to read about someone else's journey and perspective.