I’ve decided to start writing about my own experience of having Endometriosis disease on my blog soon, but meanwhile I had to get this offa ma chest. You might not think you need or want to bother yourself with reading whatever I come up with next, but before you disappear just so you know, 1 in 10 women (that’s yer mother’s, daughters, pals, grannies, aunties, workmates etc) 1.5 MILLION women in the UK alone actually have this disease. That’s a LOT.
Wanna know a tiny bit more?
It is hellish painful, extremely inconvenient, at times debilitating, and causes a whole host of additional physical symptoms throughout the body. In addition it can lead to infertility problems which can be devastating, especially for younger women. It takes between 7-12 years to officially diagnose someone with it, patients are subjected to rounds of tests, specialists and ‘symptom roulette’, before perhaps being sent to an endo specialist who can perform the diagnostic surgery. I have my own story to share about all this for another time.
You’ve heard my moans and groans, my cancelling of plans, my inability to make new ones. What’s up with me then?
For those who don’t know, I have, after around 15 years of 'IBS', 'painful periods', 'excess bleeding' and various other misdiagnosis been granted the official title of stage 4 advanced endometriosis. WOOHOO! Like winning a frickin' medal right there!
It has likely been growing in my body since birth and has only now been found through an initial surgery to remove an ovarian cyst that I underwent last year. There is no cure for this crappy painful and unpredictable disease, I have to live with it and it’s chronic symptoms and manage my lifestyle as best I can to help.
My next step is excision surgery with a partial or full hysterectomy which is absolutely scaring the bejeezuz outta me, and while it is not a promise of no future endo forming, it is a big step to removing what is there.
This should remove what has slowly been reshaping my insides causing me all sorts of hellish problems over the years and will hopefully allow the organs within my body to get back into their original locations and to operate freely without being pulled out of shape by growths and adhesions that just shouldn't be there. I'm praying the surgical team are having a good day that day.
It might not all be found, the surgery has many risks and complications but it’s my best shot at improving my quality of life. I’m gunna kick endo’s ass guys, I am so fed up of it controlling my day to day goings on, like seriously!
I just wanna say, HELLO to anyone else out there who has this, or thinks they might, or who has someone in their life who has it. It’s freaking lonely sometimes battling a weird, awkward, kinda taboo disease. That’s why I’m speaking UP!
If my speaking out bores or embarrasses a few folk then that’s fine, whatever, but speaking up and sharing what we know about endo is crucial to getting it the attention it needs so that our kids generation doesn’t have to suffer the way ours and previous ones have and getting the right treatments and diagnosis to everyone that is already fighting this utter bawbag of a disease.
https://www.endometriosis-uk.o
Comments
Jenny:
It was discovered I had endometriosis after collapsing at home and collapsing at an interview. My uterus, fallopian tubes and bowel were all joined together.
I hadn’t had particularly bad periods as a girl/woman but as I got much older, 28+, things got much worse. I had to stop on the hard shoulder of the M25 once, for 3hrs and sleep through the pain until I could function again. I had to virtually crawl off a flight at Gatwick to get to sales meeting in a local hotel but ended up having to go to bed and then being berated by my manager for ‘taking the piss’. It didnt happen every period and my period sometimes didnt happen for a few days after the event. It was only discovered when the emergency Dr arrived after I collapsed on the bathroom floor, and got me to hospital as she thought I had appendicitis. The Dr at the hospital was adamant I was pregnant even though I hadnt had sex for over a year. It was only because a junior Dr did too many tests and found my white blood cell count was too high did they realise something was definately wrong. A few months later they did a laparoscopy and discovered that my bits were all joined together. Its wasnt till they did a hystaroscopy (?), when they went in to separate everything, that they discovered that I was riddled with endometriosis and one fallopian tube was completely blocked and the other 90%. So they blew my tubes and separated everything and I then had to have Zoladex tablet injections in my stomach (agony) for 6 months to stop my periods to hopefully stop the endometriosis coming back. During all this I got married. We wanted kids but I was told the likelihood wasnt great so was I was put forward for IVF. Anyway to cut a long story short, I amazingly fell pregnant myself and went onto have 3 beautiful healthy children. I am now 54 and going through the menopause.
Oct 07, 2019
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