Our stories

Hi. I’m Stacey. This me (On a good day) I look a lot different on my bad days (You know, PJs on, hair tied back, no makeup, hot water bottle in bed sort of days)

Here’s a little about me. Okay, I lied, there’s probably going to be a lot.
I’m in my twenties, and I’m a mother to three lovely boys, who I love and adore.
I’m an aspiring author and illustrator, but I’m also a huge procrastinator.
I’ve recently gotten a little freedom back since my youngest son started school. This is the part where most mums throw a little party and get back to work, or do whatever it is they’re wanting to do. But not for me. So, here is my story.

It all started after I had my first son. Although I had always had really heavy, horrendously painful periods, I thought it was normal, and in my young teens I was too embarrassed to talk to anyone about it. When I was eighteen, I began having pelvic pain, almost constantly. The Dr told me, ‘You’ve just had a baby, it takes a year for everything to settle down’. So, I trusted that opinion and went on my way. I suffered a miscarriage before my second successful pregnancy, which during the time I was diagnosed with Symphysis pubis dysfunction – which basically meant my pelvis wasn’t moving correctly, which caused even more pain than I had when I wasn’t pregnant.

I suffered a second miscarriage before my third successful pregnancy. I was again diagnosed with SPD, so badly this time I was on crutches during the last three months of the pregnancy. The good news was, SPD was something that only happened in pregnancy, and would go away as soon as the baby was born (so I was told) but for me, the pelvic pain didn’t stop. It got to a point where some days I was crying, I couldn’t move, and it literally felt like I was having contractions. This continued for months, and as well as the pain outside of my periods, my periods were even worse, heavier and longer-lasting than usual. I began experiencing fatigue, and the pain from my pelvic and lower back began to spread down into my thighs. I went to the Doctors’ on numerous occasions, and I kept getting told the same thing. ‘You’re a mother, that’s why you’re tired, that’s why you’re in pain, or you’re depressed” – take these tablets and off you go.

It took almost a year after my third birth for a Dr to refer me to a gynecologist, who immediately suggested I have a keyhole surgery. They found cysts on my ovaries, endometriosis, and adhesion’s (which were causing my ovaries to stick on my womb.) Finally, I had an answer to my constant pain, but I’d never heard of endometriosis before. I initially thought, well, great, the surgeon has removed this endo stuff and now I’m okay…..Then I was told it’s incurable. The only relief I was going to get was lots of pain medication, and if I wanted, more surgeries for them to burn out the endo, which, unfortunately, even if I continued to have surgeries, the endometriosis grows back.

I basically just got on with it the best I could. I couldn’t walk for more than fifteen minutes without the pain starting. I found myself housebound with meds and heat patches most of the time. It continued on like this, until, surprisingly to myself and my partner, because I had been told with endometriosis, and cysts on my ovaries, it was highly unlikely I’d get pregnant again. Yep. You guessed it – I was. But it wasn’t to be. At twenty weeks pregnant, I woke to notice my little bump had completely disappeared. My stomach was flat. Worried, I went straight to the hospital, and when they did a scan, I was told they couldn’t find a heartbeat, and my baby had died in my womb. I gave birth to my sleeping angel, Noah. It was the worst experience of my life, and something I will never forget.

After such a traumatic experience, I found it hard to cope, and I began experiencing pain all over my body. Sometimes, I couldn’t touch my skin without it feeling like I’d had severe sunburn. My whole body felt like one big bruise, and I began to struggle to get out of bed in the mornings. I would either sleep too much or not at all. My partner had to do (and still does) everything in the morning, from getting himself ready for work and getting the boys ready for school. The fatigue is horrendous. I honestly don’t think I could describe it – it’s like I could sleep for hours and hours, and wake feeling like I haven’t slept for days, and have no energy at all.

Again, it took another year for a Dr to take my pain seriously. The Dr was reading over my file and had asked if I had a certain blood screening done that the hospital should have given me a year prior because I had suffered two miscarriages and a stillbirth. I said no, and she did the blood test there and then. I had no idea what it was for, but I got a call from the GP to come in after the blood test. (I was petrified.) She told me I had tested positive for something called Lupus Anticoagulant. She explained that I would have the screening two more times over a period of a few months because sometimes the tests show up a false positive. The following two tests came back positive, so I was then referred to a rheumatologist, who diagnosed me with fibromyalgia and antiphospholipid syndrome. (I won’t go into details of these now or this will get even longer, but I’ll do a post on each) I had a full antibody blood screening and further tests, and eventually (after three more appointments at the rheumatologists, and them constantly giving me mixed signals and diagnoses) I was diagnosed with Lupus.

Having all these chronic illnesses is shattering. I’m in pain every day. People look at me and think I’m okay. But I’m far from it. It’s really, really hard to get up every day and try to act like a normal person. I hate walking down the street, trying to walk as normally as possible when it feels like my stomach is being twisted, my whole body throbbing, patches of my skin with numbness, sharp, shooting pains attacking my limbs, and zero energy. Honestly, everywhere hurts. These illnesses have a huge impact on my life and my family, and on other peoples lives, too, and that’s why Claire and I wanted to start this blog, to talk about illnesses that most people have never heard of, to spread awareness and get people talking more about chronic, invisible illnesses.

Thanks for reading my story, and for joining us on our journey.

Love, Stacey.

 

 

Hi, there, folks! Welcome to mine and Stacey’s blog.

This part is about me – Claire – a twenty-five-year-old wife to my husband, Darren, and mother to our crazy boxer/mastiff, Molly. For the last four years or so, I have worked in a Mental Health Trust in Liverpool, where I have lived since moving here from Manchester when I was eighteen. I think I’m pretty normal…just a giraffe and Disney obsessed woman, making my way through life the best way I can.

Now, the catch is, I am living with an invisible illness – my insides are totally messed up. You see, I have endometriosis – (end-oh-me-tree-oh-sis) and it rules my life. It’s chronic and incurable, and honestly, a right bloody pain in my arse. (Unfortunately, literally at times) Me and Stacey will blog more about this soon, but for now, I’ll give you a whistle stop tour of my experience getting diagnosed with this condition.

So, I guess I should start my story at the beginning of my spoonie journey, which I suppose began when I was twelve-years-old. There I was, sitting on Ripsaw at Alton Towers with my friends, and somewhere between getting on, being thrown upside down and sprayed in the face with water a few times, and staggering off…you guessed it – I started my period! What a fun beginning to a lifetime of very unfunny monthly occurrences involving my body seemingly trying to kill me. It wasn’t all that bad to begin with. My periods started off pretty normal, with some discomfort, but mainly it was more an annoyance than anything else. However, as each month went by, my period seemed to get heavier, longer, and increasingly more painful. It got to the point where wearing super absorbent night time pads (changed at least every hour) was the norm. My periods began lasting for ten days at a time, and throughout them, I was exhausted, miserable and often in downright agony. This went on for years. Strangely, I thought this was normal. (Let me assure you, ladies, it’s not.)

It wasn’t until I was twenty-one that I actually decided to seek medical help. By this point, I was experiencing excruciating pain in my lower abdomen and back. The pain would come and go at any given moment and without warning. My monthly period involved having to change my pad every thirty minutes, whilst using a tampon to avoid it spilling over the ‘protective’ wings and pouring down my legs. (Gross, I know) I had frequent migraines, nausea, diarrhea, and felt like I had never slept in my life. The pain began spreading down into my hips and legs and some days, it was difficult to walk. After doing some research into my symptoms, I discovered the condition – endometriosis – a word that I had never heard, despite it affecting 1 in 10 women worldwide.

Looking at the list of symptoms attached to the condition, I had every single one, which led me to book an appointment with my GP, armed with a list of my symptoms, hoping for a quick diagnosis, and proper medical support.

How wrong could I have been?

The following six months, I saw several GP’s, who ignored the suggestion that I had endometriosis. I was told I had IBS, a food intolerance, cluster migraines, unfortunate heavy periods, stress and depression. One doctor fell short of calling me a hypochondriac when I dared question his diagnosis of IBS, and he told me the best he could do was prescribe me some antispasmodics and sent me for an endoscopy (an appointment I never received). As the weeks went on, the pain and frustration got worse. I began missing work, and repeated trips to the doctors left me with a useless prescription of ibuprofen. I begged to be referred to a gynecologist, but my GP repeatedly refused.

It all came to a head one day when I woke in such agony that I was literally screaming. My body began to convulse and I repeatedly vomited due to the stabbing and tearing sensation I was experiencing in my lower abdomen and back. My friend was so concerned, he drove me straight to A&E, where a large dose of morphine did little to ease my pain. I was kept in for testing and experienced days of being prodded and poked by various medics. I repeatedly queried endometriosis and was told there was no gynecologist available to review me. During a six-day period, I was given an endoscopy, two ultrasounds, an x-ray, and a CT scan. The ultrasound revealed I had polycystic ovaries, and the CT scan showed several areas that appeared to be pockets of some sort of fluid. I asked if this could be endometriosis…not surprisingly, I was given a definite no. I became so frustrated that I discharged myself and had to pay to see a private gynecologist. During our first appointment, I explained my symptoms, and he said, “I am almost convinced you have endometriosis.”

The relief.

Finally, someone actually believed me and had the medical knowledge to assess what my body was doing to me. He booked me in for a diagnostic laparoscopy (keyhole surgery in the abdomen) And do you know what he found?

FLIPPING ENDOMETRIOSIS!!!!!!!

Growing on my bowel, bladder, pouch of Douglas (who knew I even had one of those?), fallopian tubes, and uterine wall. Of course, this was a bittersweet moment. I was naturally terrified about what this meant for my future, but I was also so, so happy that I finally had an accurate diagnosis. From this moment, I began life as an official spoonie, and a member of the chronically ill club.

Thanks for reading my story.
Claire x

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