Endometriosis & Me: In Search of a Diagnosis

Endometriosis & Me: In Search of a Diagnosis

After blogging for a little while, I’ve decided to get a bit more personal on my blog. While it’s pretty easy to blog about beauty and lifestyle things, personal lives can be hard and serious sometimes, and finding the right words to express your situation can be challenging. I’ve always tried to keep my health conditions on the quiet, even with those I know, as I don’t really want it to define who I am, but today I’m going to be explaining a little about my experience with endometriosis. As a side note, any pictures relating to endometriosis are truly gross, so I will instead be blessing you with some dramatic cliffside pictures I took recently!

What is Endometriosis?

For those of you who don’t know, endometriosis is a condition which sees the tissue that should grow in your uterus (known as endometrium) growing in places outside the uterus, including other organs. This tissue acts exactly like regular uterus lining, and when that time of the month comes, it will break down and bleed, except it has nowhere to go, eventually causing irritation, adhesions and scar tissue to form. With this, comes immense pain and a whole host of symptoms, which vary from person to person.

Such symptoms include extremely painful periods with excessive bleeding, cramping, back and abdominal pain, pain during sex, pain when going to the toilet, bloating and infertility. There is currently no cure for endometriosis, symptoms can merely be managed in some cases, but relatively little research has been done into this condition, despite the fact it is thought to affect around 200 million women worldwide.

Why Did I Look to Find an Endometriosis Diagnosis?

I’ve been affected by endometriosis almost all my life in one way or another. My mother (and aunts) suffered from endometriosis badly throughout my childhood and had to undergo several operations and treatments to deal with the pain. On top of this, several close female family members have undergone treatment for ovarian cancer, so there is a strong family history for things going wrong in this area of the body.

I knew something was massively wrong before I even really started my periods. When that day finally came, the pain was so unbearable that I would quite often faint. At age 14 I was visiting the doctors, but considering I was fairly new to the world of menstruation, my worries were quickly brushed aside, and I was told I would get used to it. I tried and tried again to seek help, but I was never taken seriously. On average, it takes a woman seven years to get a diagnosis – this is certainly the case for me – I’m coming up to 9 years since I first sought answers.

By age 18, I demanded scans and tests to find out what was going on. I had blood tests, ultrasounds and smear tests, but unfortunately, the results to all of these tests got recorded in a medical file that spelt my name wrong, so it took me about a year for my doctor’s surgery to actually track down these results – despite me regularly asking. By this point, I was away at university, and the GP practice I was registered at there only had male doctors who had no idea about anything I was saying!

PCOS Symptoms

At this time, it was thought I had polycystic ovarian syndrome (PCOS), of which I have all of the symptoms, but not the right hormonal imbalance to receive an official diagnosis. PCOS causes irregular but painful periods, extra hair growth on the body, but thinning hair on the scalp, excess weight gain, trouble getting pregnant and the development of cysts on the ovaries. I have all of these symptoms. When I had periods, they would come anywhere between 30 and 80 days and were particularly painful and heavy when they did arrive. At 19 my hair was falling out in clumps, but the moustache I had grown sure made up for it… 🙃

Getting a Diagnosis

By 21, I had settled into my current home, with a steady doctor, following my graduation from uni, so I decided to finally demand answers. My pain from endometriosis was severe. For me, it feels like something rips inside my middle when I move, like parts of me are stuck together and are then suddenly and violently ripped apart. It could be from standing up or just shifting in my seat, but sometimes the pain would floor me. As I understand it, I think this comes from the adhesions of endometrial growth attaching to other organs or parts of me and then ripping away when I move. Some days this means that movement is completely out of the question.

My Options

After seeing a few different doctors, I finally had repeat tests, including an ultrasound in which the pain caused by pressing on the ovary zone caused me to faint, and I broke my nose! The doctors are pretty confident that I have endometriosis based on the results, and I was given two options to help me find out. To get an official diagnosis, you need a laparoscopy – an operation to explore within the body with a camera.

Alternatively, I was given the chance to go on the contraceptive pill back to back with no breaks. This stops me from having periods, and therefore stops my body from growing the endometrium. The theory is that if my pain stops from taking the pill, then it is very likely that endometriosis was causing it. As there is no cure to endometriosis, if I received the diagnosis from the laparoscopy, then I would just be put on the pill to manage my symptoms anyway. I don’t really see any point in putting my body through an operation like that for the same end result, so, for now, I am just taking the pill and hoping for the best!

Life Now

At the moment, the pill seems to be doing okay at keeping the pain at bay, although I do still get the occasional burst of complete agony! I’d say my symptoms have probably been reduced by about 80% though, which is great. In the future, I will worry more about what my condition means about my fertility issues, but for now, my main concern is my weight. My PCOS symptoms cause excessive weight gain, while the pain from the endometriosis makes exercise very hard. This is topped off with the side effects of my pill causing me to gain weight like crazy, so the current result is one big mess of a person and no amount of dieting or exercise seems to do a thing! Yay!

I will definitely be writing a post in future about my experiences with the pill, but for now, I think this is enough insight into my terrible health!! If you have endometriosis or PCOS, then I would love to chat, or read about your experiences, so drop me a comment below or get in touch via my socials!

ellennoir

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