I was diagnosed with stage 4 endometriosis in August 2014. Receiving this diagnosis was the culmination of an awful journey I’d been on since beginning my periods at the age of 12, to try and identify the cause of my pelvic pain.
Getting a diagnosis
Every time I menstruated I would be incapacitated in total agony for days, as well as around ovulation. After numerous visits to my GP I was prescribed the combined oral contraceptive pill at the age of 13 and told that what I was experiencing was ‘a normal part of being a woman’ and that I was just ‘unlucky’.
While taking the pill did provide a certain amount of relief and allowed me to function normally for a time, it became less effective as the years went on.
In 2009 I began to make frequent doctors trips again as I was anxious about the extent of my pain, which I knew wasn’t normal.
I was also concerned about a number of other symptoms I’d been experiencing, including fatigue, shoulder and chest pains, headaches, blood in my urine, and frequent gastrointestinal upsets. However, four years of visits to various hospital specialists, and several uncomfortable and invasive tests, revealed nothing.
My luck changed at the beginning at 2014, when a gastroenterologist suggested I have an MRI of my small bowel to look for signs of Crohn’s disease. This scan revealed a large and solid cyst on my right ovary. An ultrasound scan a couple of weeks later suggested that this cyst was growing, prompting an emergency referral to an oncologist. I was terrified! I underwent a laparoscopy to remove the cyst for analysis. I tolerated the surgery quite well, although the wait beforehand was anxious. When I was awake, the surgeon explained that my cyst has actually been an endometrioma and that, rather unexpectedly, they’d found severe and widespread endometriosis on my ovaries, uterus, peritoneum, pouch of douglas, diaphragm, bladder and bowel.
The surgical team were slightly amazed I’ve been able to function at all the damage was so bad in some areas.
I was elated to finally have a diagnosis, but shocked to find out I had a chronic illness that I knew nothing about.
My surgeon recommended that I visit my GP to have a Mirena coil fitted to manage my symptoms. However, after conducting my own research and speaking to a number of other women with endometriosis I sought a referral from my GP to a BSGE specialist endometriosis centre, and am now on the waiting list for excision surgery which I hope will dramatically improve my quality of life.
Living with endometriosis
Coming to terms with my endometriosis has been very challenging, and is an ongoing process. I have been very angry that it had taken so long to gain a correct diagnosis, devastated that I would not be ‘cured’, and frightened at the prospect of my symptoms getting worse and preventing me from achieving my dreams. I started to worry about everything:
Will I ever have a child? Will I be able to keep working full time? Will people stand by me?
I felt very alone and didn’t think that anyone understood why I was so upset or how much I was suffering. I was also frustrated at how little support was available- my GP and consultant focused on the fertility implications of my diagnosis, rather than helping me cope with day to day life dominated by pain and fatigue.
Endometriosis has affected my participation in every aspect of my life- with friends, family, romantically, in education, and at work. Despite missing much of my education because of pain, I have achieved high grades, and began studying for a PhD in 2012. The fight to gain a diagnosis has hindered my progress, and the stigma associated with having a chronic illness prevented me from disclosing my problems. I thought that opening up about my endometriosis would harm my colleagues’ perceptions of me and my career prospects, but I do not believe this has been the case. I am now working towards completion with better understanding from my university.
Despite how difficult living with endometriosis can be, I want women to know that there is always hope, and that that you can regain control.
I joined a local support group and online discussion forums, which has been invaluable for learning about the condition and gaining emotional support. Meeting so many wonderful people has been the silver lining of this ordeal. I have also tried acupuncture to help manage my pain. But most importantly, I have learned to stop beating myself up for not being able to do as much as I used to. I make my health a priority now, and live much more in the moment by doing more fun things with my friends and husband when I feel well enough.
If there is one message to take away from my story, it’s that you should never stop seeking answers if you have any concerns about your health. I was discouraged by so many dead ends and found it hard to advocate for myself when I felt so unwell, but I persisted for 14 years because I knew that something was wrong. Be stubborn, arm yourself with research, and surround yourself with people who support you.
Learn how Stephanie was diagnosed with endometriosis and how she took action afterwards.
“I was just told I had Stage 4 endometriosis… I wasn’t given any further information even though I had never heard of endometriosis before.”
I had been on the pill, and later the implant, for some time and had experienced only what I thought was normal period pain. It wasn’t until I decided to take a break from the implant that I experienced my natural cycle in all its glory. Wow… For 2 days a month I suffered with excruciating and debilitating pain. I had to change my rota each month to make sure I was off work when my period was due. I experienced bloating, pain and very heavy periods, along with a change in my bowel movements. My doctor was concerned about my symptoms and booked me in for a scan.
However, before I had my scan I actually collapsed with pain while I was out jogging. I was taken to A&E, given some codeine and then sent home. No further action was taken as I was already booked in for a scan the following week. My scan showed that I had a 10cm cyst on my left ovary. I was put me on a three-month long waiting list for surgery. At this point there was still no mention of endometriosis, but I was told I may lose an ovary.
Following my operation, my surgeon explained he had removed the cyst and managed to keep my ovaries intact. I was just told I had Stage 4 endometriosis… And that was that. I wasn’t given any further information even though I had never heard of endometriosis before.
Becoming an Endometriosis UK Support Group Leader
I wanted to set up a support group because I was disappointed with the lack of information I received about my illness from the health professionals. There was little post diagnosis care offered to me. I took to the internet to look for answers and discovered Endometriosis UK. I thought that there must be lots of other women with this illness and that being a group leader would allow me to bring people together to seek a deeper understanding of the illness.
Meeting other women with endometriosis is vital to coping with the illness. The support and empathy they can provide is a wonderful thing – it can prevent feelings of helplessness. Sometimes we have to push for the type of medical care we deserve and it can be difficult at times. There is a lot of work to be done to raise awareness of the endometriosis and to seek better care, this can only be done if women with endometriosis come together and show how strong we really are.
Stephanie is the Endometriosis UK Support Group Leader for Glasgow.
Lauren had been experiencing endometriosis symptoms for many years; however, it took a ruptured cyst in her ovary before she was diagnosed.
“Every step of this painful journey I’ve had to convince everyone how much pain I was in.”
I’d been experiencing endometriosis pains for three years, but was not officially diagnosed with endometriosis. About 3 years ago I noticed my periods, which had also been painful, were getting increasingly more painful. I started becoming aware of a sharp jabbing pain right by my colon and feeling tender and bloated around my tailbone and lower pelvis area. My periods had become so painful that I was missing 1-2 days of work a month. Painkillers sometimes dulled the pain, but usually they didn’t do much.
I had been in to see my GP about possibly having a cyst because I had felt a lump in my pelvis below my hip bone. My GP wasn’t convinced and said she said she couldn’t feel anything on a pelvic exam. I finally convinced her to let me get an ultrasound just to make sure. The ultrasound showed a 4×5 cm cyst by my left ovary. My GP scheduled me for a scan in four weeks’ time.
However, before I had my scan, I awoke one morning in severe pain. My husband called 999, but despite the obvious pain I was in, the medics still seemed unconvinced. I was eventually taken to hospital where I developed a very high fever and a very bloated stomach. However, I still waited for three days before eventually being given a scan, which showed an alarming amount of fluid in my abdomen. I was quickly rushed into surgery.
Post-surgery I was told I did have endometriosis and that an endometrioma had ruptured in my left ovary and had attracted a fluid to it. This fluid had become infected and was causing my high fever and pain.
How I felt finally getting officially diagnosed with endometriosis
I was a bit relieved to finally be diagnosed, but it was a scary time because I didn’t feel I was getting much support or answers from the medical community. I also felt frustrated that I wasn’t officially diagnosed sooner. I felt like I was ahead of the doctors by two or three years.
My recovery was very slow following the surgery due to damaged caused by the ruptured endometrioma and the infection. I could have been spared much pain and fear, and could have saved the NHS a lot of money, if I had been diagnosed much quicker.
Every step of this painful journey I’ve had to convince everyone how much pain I was in.
It’s really important to not be put off by doctors who don’t think your endometriosis is something to be aggressive about. You need to be aggressive about taking care of yourself by demanding ultrasounds and appointments with a gynecologist.