Dawn’s story: A 30-year journey with endometriosis

My journey started when I was 14, in the early 90's, my periods lasted for 7-10 days, were extremely heavy to the point where I would flood onto my clothes & down my legs, the excruciating pain lasted for 4 days to the point I would be doubled over in agony in the cloakroom at school with friends trying to help. No painkiller touched the pain. I tried to hide my periods & began to plan my life around them, the heaviness & flooding embarrassed me & really affected my confidence. I understand why only one of my other friends suffered like this & that all the other girls seemed to have easy periods compared to mine.

I visited my GP who took a simple history but couldn't decide on a cause & I was prescribed Feminax which helped a little but I still felt as though my insides were being ripped out. Tranexamic acid didn't help me at all. The pain was so bad that I would faint. I felt extremely anxious each month, waiting for the inevitable pain & wondering whether I would faint again because I felt so unwell.

My GP at that time said that it was simply hormone changes & part of being a woman, I felt upset and embarrassed & tried to get on with it as best I could. I kept going back to my GP who did cervical exam, STI check & smears which all returned normal. At the age of 24 I was finally referred to Gynaecology, they took history, symptomology & also conducted a physical exam but couldn't find anything wrong. They suggested a laparoscopy to investigate but at the time I was going through some serious mental health issues & wasn't in a great place mentally to deal with an invasive procedure, anaesthetic & 6 week recovery so I declined & struggled on until my mid 30's. Planning life around my periods, even down to what clothes I could wear became normal for me.

At this point, I was & still am very active, the period pains were quite controlled & my periods were light now but I was displaying perimenopause symptoms so asked for bloods which always came back normal. I was really confused by this as I knew that something wasn't right so I kept insisting on hormone tests which always returned as normal.

I'd had my bloods done on a few occasions until a new GP requested the CA125 blood test which showed an abnormality. This was a very anxious time for me as thoughts of cancer and what ifs crept in. I had a transvaginal scan which found a nice big fibroid the size of a grapefruit was sitting in my uterus (we named him Pedro), he wasn't causing me issues so we left him alone, I was 42 at this point & quite happy that nothing sinister was going on. I finally had a reason for my bad periods, or so I thought.

The following year I had what I thought was gastroenteritis which displayed as a bout of severe stomach cramps & diarrhea which lasted a week. I was getting worse and shooting pains up my rectum were extremely worrying. My GP suggested I visit A&E who thought my appendix was rupturing. I was scanned again & my fibroid had grown so I was listed for hysterectomy.

The wait for hysterectomy was 2 years so I sought a private opinion & my gynae surgeon Mr Slade was my saviour, he took a full history, performed a physical exam & read my MRI. A month before my surgery (age 43) I was diagnosed with endometriosis. I sat in his office & cried, I was so relieved that I had a true cause for all of my symptoms and that I would finally get a resolution.

The day of my surgery, I was calm & ready for what lay ahead. My partner walked with us to the theatre & as I got in the lift because the enormity of what was about to happen hit me. I cried whilst I was prepped for surgery & when I woke up I felt brand new!

During surgery, Mr Slade found 4 fibroids of varying sizes & a ball of endometriosis wedged in my pelvis. My appendix was ruined by endometriosis, endometriosis covered my bowel, bladder, stomach wall & other internal organs in that region. My ovaries were full of cysts and were simply releasing eggs into the cysts. My bowel surgeon was amazing, he adhesiolysis to as much of the endometriosis as he could & Mr Slade educated me on what HRT I could have for 6 months following surgery to ensure that any left over endometriosis died & did not recur.

I had always had a pot belly which I just thought was my shape and I had always had back issues which I could reason by way of accidents I'd had. I'd had bowel issues in that I could go to the toilet 6 times a day & thought this was my normal routine. I'd experienced shooting pains in my vagina & colon with pain during sex, ovulation pains and also appendix pains. The endometriosis fatigue was the worst symptom for me, it really ruled my life & tried my best to fight against it & now let it beat me. It really drained me for 20 years & made me quite unbearable to live with.

The day after my operation, even though I felt awful, I felt great! The exhaustion & dark moods which I'd struggled with were gone, the pain of endometriosis was gone & the anxiety had gone - I have a new lease of life & am making up for lost time while raising awareness of this condition which took me so long to understand & also awareness of menopause.