When I got my first diagnosis, it was a mixture of relief, thanks and fear. I remember lying in recovery feeling at ease because I finally had an answer to all the pain and symptoms I was experiencing. Since that first diagnosis, it seems to have been a bit of a snowball effect and I’ve been diagnosed with other, possibly related, conditions. The journey I’ve been on to get to where I am now compared to where I was in the midst of a diagnosis has been an absolute roller coaster.
Looking back, my family and I realise that I had actually clearly had symptoms of something not being right as a child. I had a constant stream of urine infections that started when I was very young, I had terrible frequency and my menstrual cycles were unbelievably heavy and painful since they first stared. But every doctors trip my parents or I had gone ended with the same two outcomes – “she’ll grow out of it,” or “it’s a normal part of being a woman,”. Yeah, right.
My first diagnosis was with Endometriosis in early 2016 during a laparoscopy. The Endometriosis was found on deep into my bladder, on my bowel, left ovary, ligaments and Fallopian tube. I also had multiple adhesions that attached my bowel to my pelvic wall, and others pulling on my bladder, uterus and ovaries. These growths were removed and I was started on various hormonal and pain relieving medications.
This was shortly followed by a diagnosis of Interstitial Cystitis later that year following my second bladder cystoscopy. I underwent a hydro-distension at the same time and started on some stronger treatment.
I felt like that was it – I had the reasons for why I was suffering so much, so there was no reason why I couldn’t start living my life.
Unfortunately, although my Endometriosis growths were removed, my symptoms came back within a couple of months. I was in pain all the time and was struggling to cope with working full-time. I was also back to getting regular infections, and on top of this, I started to develop overwhelming fatigue that would cause me to be unable to speak, move or walk up stairs. After multiple trips to my GP, I was referred to a specialist fatigue team who diagnosed me with Myalgic Encephalomyelitis (M.E., also known as Chronic Fatigue Syndrome). I was signed off work for a short time and put onto a strict return-to-work scheme.
In the meantime, I underwent a second laparoscopy and my Endometriosis and grew back faster than my consultant had imagined – despite them telling me it won’t have grown that quick. As I was unable to take any other hormone medication, and didn’t want a hysterectomy at 23-years-old, my body was forced into the medical menopause for 9 months in a bid to slow down the super-fast Endometriosis growth inside me.
After this operation, I managed to get back to working full-time. I’d been put on an even stronger bladder medication and was having to use catheters at home because my bladder was in a state. In the space of a year, I underwent two further bladder surgeries, developed sepsis from a kidney infection, was hospitalised with infections, and had indwelling catheters at two different periods.
As my consultant was worried about me becoming more and more unwell with each infection I had (and the fact nothing was stopping them), he referred me to a very specialist specialist who performed complex surgeries my consultant couldn’t offer. Within weeks of being seen, I underwent the first stage of a specific type of surgery called “Sacral Nerve Stimulation” (SNS) and spent 3 weeks bandaged up with electrodes and wires stuck into my back. I can’t begin to describe what difference it made to my life during those 3 weeks – my bladder pain disappeared, I was able to empty my bladder properly for the first time in years, and my frequency improved from almost 30 times a day to just 7.
Whilst I was waiting for my funding to be approved to have the SNS device fitted for life, I came out of the menopause as the side effects were too intense – I developed acne, joint pain and hot sweats like you couldn’t imagine! Within weeks of coming out of it, my pain returned shortly followed by all of my other symptoms, but accompanied with severe bleeding problems and a sensation my uterus was going to fall out. I spent ages trying to be re-referred to my gynaecologist because I knew something wasn’t right. When it happened eventually, I was found to have cysts and was booked in to have a bigger operation, which I had earlier this year. Whilst my Endometriosis appeared better than during previous operations, the team also suspected I had it’s sister disease Adenomyosis. I was told other than a hysterectomy and controlling my pain there wasn’t much they could do.
Even though it has taken time to adjust to living with these illnesses, I feel I have come a long way. I have worked to improve my management of my conditions. Currently, I am still able to work full-time, have a date for the permanent fitting of the SNS device, and am under a pain management team. I have learnt that I am braver and stronger than I think, and that I have the most wonderful support system through my husband, family and friends.
The journey of life with chronic illness is never easy and it is always changing. I don’t know where my conditions will take me next, but I know I’ll be able to face the challenge head on.