Endometriosis and me part 2: 5 years to diagnosis!

If you’ve not read part 1 of Endometriosis and me, then you may want to give that a read first 🙂 

my endometriosis operation wounds

March is Endometriosis awareness month. The perfect time, for people like me, to start raising awareness for a COMMON condition, that is still relatively overlooked.

In fact, Endometriosis is so common, that 10% of women have it, yet it takes on average 7+ years to get diagnosed.

SEVEN YEARS!

Sufferers are usually dismissed by their doctors as having “just period pain”, abnormal periods that will “sort themselves out”, or on some occasions they’re actually misdiagnosed with other conditions.

My story

My story started around 5 years ago. I won’t go into the gory details, but after a few odd symptoms I went to the doctors for a smear test. Unfortunately as a 22 year old at the time, I was refused.  It didn’t matter that the doctor agreed it seemed unusual. Anyway, she referred me to a gynecologist who did a colposcopy and told me I had cervical ectropion. With no treatment, I was advised to stop taking the contraceptive pill and all would be fine.

It wasn’t

I gave it a few months, as the gyno said, but there was no change. Things only got worse over the next year or so and eventually I was sent for ultrasounds. Of course, these ultrasounds came back ok – no further action necessary.

SERIOUSLY?

Whatever, I’ll just get on with my life – feeling like a hypochondriac attention seeker.
Another few months went by and my partner and I had moved house, and changed doctors, so I thought I’d give it another shot.

“1 smear test please”

“Sure, anything else”

Wait – what? Finally, just a few months before my 25th birthday, I was allowed a smear

*hallelujah*

I explained all my symptoms to the doctor, who for once actually seemed genuinely concerned. After the smear came back ok, I was sent to a different gyno to have my ectropion cauterised (basically burnt with a weird match thing). I figured this would be the cure. The cure to my weird spotting, weird periods, painful sex and oh so much more. But lowe and behold, it didn’t change anything.

I gave it a while, you know, to see if anything would change, but it didn’t. I’d almost given up. Resigned myself to the fact that I was some weird freak of nature with the ability to bleed at any given moment. But, the final straw came when I was at the gym one day last year, I’d been running on the treadmill and all of a sudden I was hit with the most intense pain, it felt like someone was literally inside my vagina – pulling out my womb with their hands. It was excruciating! I was so upset. I’d got so in to fitness over the last few years, I thought it was my escape from all the problems, but it seems they had now started following me there.

Taking it easy over the next few days, I decided to do some light ab work instead. NOPE. I got the pain again, just as bad as before, this time accompanied by bleeding, like I had literally ripped something inside.

Back to the doctors again….

They sent me for another ultrasound. I was hopeful. I could actually get a diagnosis. Finally. After 2 weeks of waiting for results, can you imagine my disappointment when I called the doctors surgery and they told me my case had been closed as no further action? AGAIN – c’mon!

I was literally ready to kick shit off! I called the surgery and (I’d like to say demanded, but I’m far too nice) asked to speak to my doctor. Reluctantly she referred me to the Hampshire Clinic hospital, after explaining my symptoms to the gyno, I couldn’t believe it when he said

He thought it was Endometriosis

Why had this never been mentioned before, I googled it – it sounded exactly right. So in between our wedding and honeymoon I was booked in for a diagnostic laparoscopy (if you don’t know, this is a keyhole surgery on your pelvic/abdominal region) I kept imagining how I would feel, if they didn’t discover anything. Could I have made it all up in my head? Was there another reason for the constant bleeding? Am I just weird??

Once awake, the specialist came to speak to me and informed me, I did have endometriosis and that he had removed some from my bowel area, and during surgery had fitted me with the Mirena IUD. I was so happy to finally have a real diagnoses and what I hope is a cure (even if only temporary) for this horrible condition.

I’ve had a few complications since my surgery. Since moving to France with my studies I haven’t had my follow up appointment. If I’m honest, I have no idea if the surgery worked or what happened as I can’t get hold of the surgeon and his secretary has been awful. I’ve had a lot more pain since and still a lot of bleeding, and I’m hoping it’s Mirena related. I’m getting it out on Wednesday, and hopefully, for now, I’ll be endometriosis for free – We shall see!

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