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Endometriosis Diagnosis

by Nadyne about a year ago in health

The journey to finally finding out I have endometriosis

A spoonie is someone living with a chronic illness

At the age of 9 I started my first period and every month after that it became hell. I had no idea what was happening to my body, it did not feel normal. As the years went on the pains got worse, I dealt with the heavy bleeding and clotting it was horrendous. I was constantly tired and had no clue what to do for me to make myself better.

Years went by and I got used to knowing and understanding my body, but the pains became unbearable. I went back and forth to the doctors because of all the symptoms I was developing only to be told its all in my head. I cried, I was left thinking nobody believes me and that I am a liar. At that point I knew I was alone. I knew nobody would never understand what I was going through, what my body was going through. They all claimed to understand and put my fatigue down to my anaemia. However, the anaemia was because of the amount of blood I was losing month after month. They put me on the contraceptive pill at the age of 16 to help reduce my periods alongside paracetamol, ibuprofen, tranexamic acid and mefenamic acid. I was taking 7 tablets three times a day and still my periods were the same. I was still weak, I was still throwing up, still curled up on the floor in a ball rocking back and forth, still alone, still scared of wondering whether today was the day I was going to leak through, was everyone going to see that I was on and couldn’t change my pad in time because of how heavy my flow was. You would think that with the amount of cycles we have we would be prepared to not get caught out but sometimes it was impossible. Sometimes it would be heavy to the point its running down my leg or I would be laying in the bath and see a massive clot floating around. I laid there thinking this is disgusting and having to run a whole new bath to be clean but still I did not give up.

The doctors made countless referrals and I was checked for so many conditions, then told I had IBS (irritable bowel syndrome). Did I agree with that? maybe, but it did not explain why I was bleeding so heavy or why I was throwing up a lot when I was having my cycle. Eventually the doctors started to run tests and sent me for bloods, endoscopy, colonoscopy but still no results. A referral to gynaecology was made, I just saw it as another here we go again, more tests and no results. The consultant started off with scans and bloods but as usual nothing shows up. The consultant then said based off all the information I gave he believed it was Endometriosis but the only definitive way to find out was a laparoscopy. He explained everything that would occur and that he could go in and there could still be a chance of not finding anything, I had everything else done already so why not do this? So many thoughts ran through my head, what if he does not find anything? what if I do have this condition, what will it do to me? I had no clue, but I knew if I didn’t I would never know if I did or didn’t have the condition.

Laparoscopy day came and I had a complete meltdown, I had a massive panic attack which took ages for me to calm down, but the nurses were empathetic and so was my consultant. They spoke to me about everything that was about to happen and as they were about to put me under. When I came around, I was in so much pain, I started to freak out as I had wires all over me and a tube down my throat. My consultant came over when I was more alert, and I laid there thinking here we go again. Going to hear I am sorry I could not find anything, but it wasn’t that, it wasn’t that at all. The consultant confirmed I had endometriosis and that it was very severe. I had it stuck to both my ovaries and my bowels. I had scar tissue everywhere. He said they had removed all the endo tissue and all the scar tissue but explained to me that at some point it will grow back. At my follow up appointment my consultant explained the extent of my condition and that I may find it hard to conceive as well as carry my own child, my heart sunk…

The black spots is endometriosis

The frothy white bits is scar tissue which was found in multiple places as with the endometriosis

This is how it starts to look as the endometriosis and scar tissue have been removed



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