Living with chronic illness can take over your world for the first few years. It’s a struggle to answer all the questions that family, friends and co-workers ask because you can barely say the illness at the beginning, let alone explain it.
This is my story about Fibromyalgia and Endometriosis: two conditions I have come to learn that most GPs struggle explaining, so it took me lots of research and paying attention to my symptoms before I understood the life-long illnesses and how they would affect me,
Firstly, some people will just not understand and you will hear lots of unwanted opinions. I sadly have lost friends and family but it’s important to remember that you are not alone. Read blogs and forums (not the unresearched ones). Remember that YOU are the one living through this experience, and not everyone is empathetic enough to understand—especially without living through chronic pain themselves. Educate yourself. Doctors are not specialists and we can’t all afford those. Read as much as you can, but ignore anything deadly—google is a bitch sometimes.
- Chronic pain experienced all over the body
- Which in some cases affects mobility
- Pain comes in waves considered “flare-ups”
- Numbness and loss of sensation
- Pins and needles sensation or irritated skin which is not visible
- Muscle cramps and loss of strength
- Extreme fatigue
- Depression and anxiety
Find out more on the NHS website
- One in ten women suffer
- Affects fertility
- Endometrial tissue from the womb found elsewhere in the body
- Severe pain in the pelvis but also in the back, groin and legs
- Pain during and after sex
- Ovarian cysts and endometriomas which cause constant pain
- Causes painful and heavy periods
The hardest part for me was accepting that I will always have this. Forever.
There isn’t enough known about Fibro and although studies have grown for endometriosis, there is no cure. After fighting for diagnosis, going through poking and prodding, MRIs and ultrasounds, it’s almost a relief to know I wasn’t going crazy. But when you understand the reality, it can be pretty hard to come to terms with. I wasn’t sure about sharing my story, but following so many women has supported me, so here goes.
In 2017 I knew something wasn’t right. I had pains in my hips that affected me walking and the pain in my legs would bring tears to my eyes. I also had pain in my shoulders and my whole body would hurt to touch. It got to the point where I was taking days off for doctors’ appointments which caused me to stress about my job, and I was so tired it was getting hard to wake up in the mornings.
I was seeing my GP again around October when she mentioned having trigger points of pain. She tapped a few points with this mini metal hammer thing and told me it could be something called fibromyalgia. I couldn’t say it or understand it but finally someone believed me.
It wasn’t a quick process. I was advised to go private to see a specialist for diagnosis because it would take up to three months on the NHS. Once I had been seen by the rheumatologist, they could give me a label and send me back.
That’s £200 for 30 minutes with the same consultant I had when I returned as an NHS patient. Anyway, it did speed things up and by November—when I was practically bed-bound and unable to work—I was diagnosed with fibromyalgia. I was put on pregabalin to help manage my symptoms and after two weeks rest, I was back to work in a new job. The pain was still there but it was under control.
Over the past year, I’ve had a few bad flare ups, but with help from a specialist nurse and going to groups that taught me about the condition, I learned to live normally as much as possible, and I even got myself off the medication. I used to laugh when I was told I would eventually learn to “manage the pain” but it’s true. I’m not a pro on the illness and I have a long way to go, but my fibro is “manageable” in between flare ups if I’m sensible.
After a busy year studying alongside working, planning a hen do and traveling to three weddings, last year (2018) was pretty busy. I was finally feeling back to myself. My other half supported me through the rough and we were happy to be getting on.
Then I took a smear test in June.
PLEASE PLEASE PLEASE, DO IT! It was so quick and you can barely feel it. The results came back with negative cells so I went along for a colposcopy that turned into a biopsy. This confirmed I had C1N3 pre-cancerous cells that would need to be removed. I was a little shocked but more relieved that something could be done and amazed that we have such incredible prevention for cervical cancer—something my mum had at 33.
The procedure, which I had in September, was pretty straight forward. I went under general anaesthetic and the gynaecologist burned away the bad cells with a hot metal loop that was used to remove parts of my cervix. The side effects were heavy bleeding with pelvic pain and a shortened cervix which meant you may not carry full-term in pregnancy. But hey, no fucking cancer so no complaints here!
BUT the pain seemed to last forever! And that is where the next part comes in…
Six weeks post-op I was having the worst period pains of my life. I normally ball up on the bed and go hot and cold. I rock myself through the waves of pain and feeling sick. I can’t even speak when it happens because it’s that bad. So my boyfriend convinced me to go back to good ol doc who pushed on my stomach (fucking ow) and told me I need an ultrasound.
This is when I was diagnosed with endometriosis, probably after years of suffering.
I was told that they found a haemorrhagic cyst on my ovary. The docs arrange a laparoscopy to look inside and tell me they’ll monitor the cyst. I was jobless because my boss wasn’t understanding, in severe pain, and completely confused by yet another illness I couldn’t pronounce or explain.
Soon after, I manage to start my first journalism job and am feeling positive. Work is being really helpful with appointments and things are looking up. I’m pushing through my fibro pain, eating healthier, sleeping better, doing everything I can but I can still feel normality slipping through my fingers.
Then ultrasound number two came. They find more cysts. Two endometriomas on my left ovary, preventing ovulation and explaining the constant pain. Then a larger normal “lone” cyst near my bladder which they couldn’t explain. They had developed in the time from the ultrasound only six weeks beforehand and I needed surgery as soon as possible.
A laparoscopy is keyhole surgery where they go in and blow air into your pelvic region to allow space for a camera to move around (and play with organs) to get better understanding of what’s going on. Then my surgeon would need to perform a cystectomy whilst trying to preserve what’s left of my fertility as much as possible.
I had the surgery recently and when I woke up (queue vomit) I was told that everything went well. It wasn’t as straight forward as they expected because when they made the first incision, they discovered that the “lone cyst” was bigger and very stuck to my abdominal wall. My gynecologist needed to get a general surgeon to remove it and I was under for three hours instead of 40 minutes. This has been sent off for a biopsy.
They successfully removed the endomeriomas and burned the endometrial tissue floating around and I should find out my full results in a few weeks time.
I’m now in recovery, with three holes in my belly and so much pain, but I am on the mend and I’m clear of cysts for a little while. Endometriosis will continue to be a pain in the arse and the likeliness of falling pregnant is low, but doc said if we try now we’ll have a better chance. Fertility issues are one of the main problems with the disease and I welcome any advice from fellow Endo-sufferer’s.
To my favorite humans, the ones who never fail to amaze me and stand by my side, I thank you all from the bottom of my heart.
I hope my journey is useful for anyone suffering from chronic pain. My advice? NEVER give up fighting. You know your body and your symptoms!
Please reach out if you have anything to share or ask.
Feature image by Everyday Health