My Endometriosis Diagnosis Took 20 Years

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I suffer from endometriosis. It’s a condition where tissue similar to that of the endometrial tissue that lines the uterus grows in other areas of the body, and this tissue responds to changes in female hormones with inflammation and bleeding – as well as scarring because the bleeding cells in other areas of the body have nowhere to go. It’s certainly not fun. In fact, it’s affected my life in one way or another since I first got my period at 12 years old.

I didn’t know that I had it back then. All I knew is that I had severe period pain – I’d be literally bedridden for days at a time with intense cramping, migraines, continual vomiting and heavy bleeding. I’d have to take days off school from pain and I’d bleed so much that I’d completely fill a pad and leak everywhere in less than two hours. I’d become so swollen that it looked like i was 4-5 months pregnant. I suffered from chronic anaemia and severe back pain. My periods were also irregular. Sometimes they would come every two weeks, sometimes every two months and last for up to 9 days at a time.

Doctors told me ‘I just had it tough’, ‘some people just have bad periods’ and ‘if your mum was like this, that’s probably why you are too’. Some doctors even called me a hypochondriac. There was no other explanation. I was told to take panadol and anti-inflammatory medication and that was that.

My self esteem suffered immensely. I hated this body that I was stuck in. I hated how it limited me.  I still have days when I feel like a slave to my body.

The pain didn’t just happen during my period either. My inflammation haunted me. Back pain and abdominal pursued me. It affected my school life, my social life, my work life, and eventually my relationships.

My self esteem suffered immensely. I hated this body that I was stuck in. I hated how it limited me. I still have days when I feel like a slave to my body. Why do other people get to be able to make plans and enjoy them, or have goals that remain unaffected by constant interruption and limitations? Why do other people take for granted that they get to do everyday things without having to feel pain or worry about pain affecting what they can and can’t do?

Why do other people take for granted that they get to do everyday things without having to feel pain or worry about pain affecting what they can and can’t do?

At around 31 years of age, my pain was so severe that I had to cease work. I couldn’t sleep from my back and abdominal pain; in fact 3 hours of sleep was a blessing for me. I was vomiting a minimum of 7 times a day, and sometimes the vomiting was waking me up from my sleep. My abdominal inflammation was so severe that people actually started asking if I was pregnant.

Doctors did endless scans and ultrasounds on my upper and lower abdominal region that didn’t show anything at all. I did xrays and CT scans that came back clear. I did an endoscopy and colonoscopy which showed inflammation and was told it to stay off lactose and gluten, and that my pain was otherwise unreasonable. Again, I was accused of being a hypochondriac. I became depressed and felt worthless.

It wasn’t until a routine Pap smear that things changed. I went to a gynaeocologist rather than a GP, and when we went through my symptoms he straight up said that I probably had endometriosis which is hard to detect unless through laparoscopic surgery. He also ordered a blood test for CRP levels. CRP is a marker of inflammation in your body with optimal levels being under 0.55 mg/L in men and under 1.0 mg/L in women. If you have a reading greater than 3 mg/L then it suggests that something is wrong. Over 3 mg/L puts you at high risk for cardiovascular disease, above 10 mg/L suggests severe inflammation, and over 10 mg/L can indicate bone infection, osteomyelitis, or even cancer.

My CRP levels were over 30.  Finally, someone could see that I wasn’t imagining all this pain. It was real, and my doctor wanted to help and do something about it.

He warned me of course that endometriosis and the severity of it could affect my fertility… I didn’t care. I’d deal with that later. I just didn’t want to be in pain anymore.

I went straight into surgery just days later. He warned me of course that endometriosis and the severity of it could affect my fertility; he would have to remove the endometriosis and sometimes if it appears in the fallopian tube or ovary then they may be affected too. I was single and had hoped for kids one day, but at this point I didn’t care. I’d deal with that later.  Nothing else mattered, because at this point I had no job, no social life, and felt drained of happiness. I just didn’t want to be in pain anymore.

When I woke from surgery, seeing my doctor’s face was like seeing an angel. I can’t explain it, but I just knew I finally had my answer. He looked at me, smiled, and said it was endometriosis which had also caused uterine scarring. He said I had severe inflammation, and my body had somehow become hypersensitive to my condition; probably tired of not being listened to, it had decided to literally SHOUT that it was in pain.

I was lucky. I didn’t need my ovary or fallopian tube removed. I was put on the pill to help regulate my period and manage the endometriosis by also suppressing ovulation. It helped so much.

Am I pain free now? Definitely not. Can I make plans without worrying I’ll have to cancel them because of pain? Absolutely not. In fact I’m told that my symptoms may elevate over time again and I will probably need surgery every 5 years or so, if not sooner.

Finally after all these years I am able to manage things because I KNOW what I have.

So there you go, it wasn’t until I was 32 years old that my diagnosis finally arrived – yes, 20 years after my pain first began. I had to adjust my whole life. I changed jobs to freelancing so that I could be more flexible to accommodate my pain. Meanwhile several years later, my diagnosis marked just the beginning of a fertility battle, miscarriage experience and further surgeries. I am still fighting my daily battle of inflammation and seeking specialist fertility advice. But I am pleased to say that my pain is not as severe closely following surgery, and finally after all these years I am at least able to manage things because I KNOW what I have.

I pray one day that there is a cure or better management than the pill and surgery.

Until then, if my story sounds familiar to you then I hope you will not feel alone, and that you keep pushing for your answer and management plan too.

Author and Managing Editor E Fegan

Eleni Fegan is the founder and Managing Editor of DearBub Blog and Magazine which began from a personal journey of research and healing. Her motivation for DearBub is beautifully summarised in her Editor’s Letter“I realised that there is beauty to giving voice to our experiences, and raising an awareness that we are not alone in them. I realised the immense power that ‘sharing’ had in transforming our sense of self and being through creating connection”. 

#Content in this article has been by contributed by E Fegan. Please apply credit if referencing this article.

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