Endometriosis Mini Series – Ciijae’s Story
Location: Bedford, UK
How long did it take for you to be diagnosed with Endometriosis?
I was actually diagnosed by accident, about 6 years ago, while having a lot of tests for my autoimmune conditions. It was during a scan that I was told I might have Endometriosis, it then took around 7 months to get diagnosed. However, I would say it took about 4 years until I was taken seriously and any action was taken. After several unsuccessful trips to A&E and being given morphine, I was sent home with no solutions. I wasn’t able to find the right specialists, but by the time I did the Endometriosis had spread and become severe.
Could you tell us about the symptoms you experience and how they affect your daily life?
During my periods, I get excruciating pelvic and abdominal pain, headaches, nausea, dizziness, brain fog and chronic fatigue. My symptoms get so severe that I struggle to function, leave the house or make plans during that time. The worst of it usually lasts about 4 days a month, this used to last longer before my surgery. The rest of the month I still get pelvic and abdominal pain but it’s more manageable, the fatigue however is still challenging, so I’ve had to learn how to pace myself.
How many surgeries have you had, and how have they affected you?
I’ve had a two-part surgery, the first one was a diagnostic laparoscopy, where they drained my ovarian cysts and determined the severity of my endometriosis, in order to plan the next steps. However, due to another illness I have called lupus – a lot of planning had to be done for this surgery as the medication I take suppresses my immune system, so the surgery was incredibly risky for me. My doctors were concerned I wouldn’t be able to heal from such major surgery, so they were very reluctant to operate. The endometriosis had grown on my ureter and was so close to my kidney, the doctors were afraid I might get kidney failure. It’s harder for me as I couldn’t survive with one kidney due to my lupus (it already attacks my kidneys). It was during this surgery that I was diagnosed with severe stage 4 Endometriosis, including internal bleeding, along with this my uterus, ovaries, bladder, fallopian tubes, bowel, and ureter had all fused together. The second surgery was excision and that was to release my organs and remove the endometriosis. I was also told I may need to prepare to lose part of my bowel if it was too damaged.
In between the two surgeries I was on hormone treatment, these injections slow down the growth of the endometriosis, however they do have harsh side effects. I have been on both ‘Zoladex’ and ‘Prostap’, they are both similar, but the ‘Prostap’ made me very ill. These treatments put you into temporary menopause , and thins your bones, this was very painful for me. Other side effects I had were; nausea, vomiting, hair loss and anxiety. It also flared up autoimmune conditions, I had to have additional steroid injections to try and manage my Lupus. I’m still healing from my surgery and I still find I get pain, but I am unsure if this is pain from scar tissue from the surgery.
Where can women or loved ones go for advice and support on Endometriosis? (forums or any online support)
If you live in or near London, the endometriosis UK charity hosts regular support groups. I love The Mighty it’s a great community site for anyone battling physical and mental illness, they also have a Facebook and Instagram page.
Have you been diagnosed with any other conditions alongside your Endometriosis?
Yes, I have adenomyosis, rheumatoid arthritis and lupus along with hypertension, anaemia and other autoimmune conditions.
What can family; friends and co-workers do, to help their loved ones who are struggling?
Listen and offer help where they can. Endometriosis can be debilitating and there are times when you can’t do a lot for yourself, so support is necessary, even if it’s just someone to talk to. I’m incredibly grateful to my family for their support and love.
In your opinion what more can the NHS do to help women with Endometriosis?
Doctors and medical staff need to take patients and their symptoms more seriously. Too many women are being sent home after complaining of symptoms, which should be investigated. Endometriosis causes horrendous, crippling pain and can lead to infertility. It currently takes an average of 7-8 years to diagnose which is not unacceptable!
If you are experiencing extreme pain during your periods, where daily activities are disrupted and you get heavy bleeding, see your doctor. We know our own bodies and can usually tell when something isn’t right. If your doctor doesn’t take you seriously, be persistent, keep going back and don’t take no for an answer!
I think counselling should also be offered as part of the recovery for endometriosis, it is a very emotional condition to deal with, many women suffer with their mental health greatly.
What advice can you give to others with Endometriosis and how can we raise more awareness?
I know it’s difficult and easier said than done but try not to stress, as it can make you feel worse. Educate yourself about your illness and don’t be afraid to research and try natural remedies. Always check with your doctor for drug interactions.
Eat a healthy, balanced diet and try include vegetables and fruits. You can also make juices and smoothies, these can help with energy levels. To help with pain I use an infrared heat pad on my belly!
Endometriosis is an invisible illness, so it’s hard for people to understand the level of pain we are in, because you can’t physically see it. We can raise more awareness by sharing our story, it’s also a great way to meet other endometriosis sufferers. Other women with endometriosis have also taught me a lot, it’s lovely that we can all inspire, support and build each other up.
Endometriosis can be a very lonely and emotional condition to deal with, but please remember how strong you are and never give up. There is help and support out there, you’re not alone.
To follow Ciijae’s Story check out her Instagram handle @Ciijae
Copy by Elysha H.
Images By Ciijae and Pexels