Endometriosis Awareness – Shireen’s Story
The second in our Endometriosis Awareness Mini Series is by warrior Shireen Hand. She is a blogger at EMLWY : Endometriosis – My Life With You where she talks about her life, and gives a place for others to put their stories on creating an amazing community for bloggers and warriors alike.
I started my periods in 1995, when I was 12 years old. They were awful right from the start and I would have terrible tummy aches and would flood without warning because they were so heavy. It never crossed my mind that this was anything but normal, especially since my mama and friends seemed to experience the same pain and discomfort with their periods.
When I was 21, sex became painful. I still didn’t think this was anything out of the ordinary and I felt silly even bringing it up with my doctor. Luckily, he took my pain seriously and sent me for a variety of blood tests and STD/STI checks. Everything came back clear so I was referred on to a gynaecologist at our local hospital where I had laparoscopic surgery and was subsequently diagnosed with endometriosis.
If you have no idea what endometriosis is, you’re not alone. Did you know that the same amount of women in the UK suffer from diabetes as they do endometriosis? Sadly, only 20% of the population have heard of endometriosis, compared to a massive 80% for diabetes!
I had never heard of endometriosis before. I quickly learnt that it is a painful, chronic and sometimes debilitating gynaecological disease that affects 1 in 10 women – that’s approximately 176 million women around the world and 1.5 million in the UK alone. Even then, I still had zero idea of how it was going to eventually impact my life.
So, what is end-oh-mee-tree-oh-sis? Endometriosis occurs when tissue similar to that which lines the uterus is found growing outside of the womb, usually in the pelvis (although it can be found elsewhere in the body, anywhere from the vulva to the brain), and develops in to growths or lesions. Endometriosis cells react in the same way to a period, except these cells are located outside of the womb. During a woman’s monthly cycle, hormones stimulate the endometriosis. This causes it to grow, then break down and bleed. This internal bleeding, unlike a period, has no way of leaving the body. This results in a build up of inflammation which can cause various organs to become matted together in a web of scar tissue (adhesions). These can cause chronic pain and may interfere with the normal function of organs, such as the bowel, bladder or ovaries. Endometrial tissue can also form cysts on the ovaries which can cause severe pain themselves.
In 2005, at diagnosis, endometriosis was found on my left ovary and on the pouch of Douglas behind my womb. At my last surgery in 2013, it was found on my pouch of Douglas, both ovaries, bladder, pelvic brim and diaphragm, my left fallopian tube and left ovary were attached to my pelvic wall and then all of that then attached to my bowels. Oh, and my left fallopian tube was also blocked and it all stopped me from ovulating… In short, I’m riddled with it!
I’ve gone from having a painful few days while on my period, to suffering with pain on a daily basis, pain when I go the toilet, pain in not only my abdomen, but also across my back, down my legs and in my shoulder, neck and chest, incontinence, constipation, upset stomachs, fatigue, insomnia, mental health issues, hot flushes and mood swings.
I’ve also been diagnosed with endometriosis related pain, osteopenia, sciatica, fibromyalgia, trochanteric bursitis, anxiety and depression along the way… I’m gathering quite a list of chronic conditions!
Endometriosis gave me the joyous gift of infertility too. After two years of trying for a baby, (futile attempts, might I add, since endometriosis had caused irreversible damage to my reproductive system) we were overjoyed to be granted one round of IVF. It worked and I fell pregnant in March 2014. After a very rocky pregnancy which included a preterm labour scare, countless trips to hospital with the pains endometriosis was causing, an induction and an emergency c-section, our precious boy was born. Hunter is now a very lively, loud and wonderfully caring 3 year old. I am truly blessed to have him and his daddy in my life.
Over the years, I’ve tried every treatment option suggested to me and have had all manner of scans, surgeries and medications to help with the pain. I’ve had 4 surgeries to remove endometriosis. I’ve been through a chemically induced menopause 3 times with Zolodex and Decapeptyl injections. I’ve tried 3 different types of contraceptive pill, the Mirena coil, the Mirena coil and pill at the same time, the Nexplanon implant, the Nexplanon implant and pill at the same time, and a whole list of various pain relief methods. I’ve been to a pain management clinic and have seen a physiotherapist and a pelvic pain psychologist. I’ve also been put forward for experimental treatments usually only given to women with breast cancer, but unfortunately my bones couldn’t take the treatment. Sadly, nothing has ever helped.
There is no cure for endometriosis. Not pregnancy, not hysterectomy, not anything. If you’ve been told by a doctor that something will cure your endometriosis, or if your next-door-neighbours-friends-brothers-twice-removed-cousin has tried this that and the other and it cleared there endometriosis right up, well, great for them. Unfortunately, there is no single treatment, diet or exercise that works for everyone. Our bodies all work differently, and sadly, endometriosis knows this all too well.
If you have painful, heavy or irregular periods, pain during or after sex, are facing challenges trying to conceive, have painful bowel movements or pain on urination, if you can relate to anything I’ve written here, please speak to your doctor or healthcare provider. Pain isn’t normal.
By Shireen Hand
First Published on EMLWY
Content and Images by Shireen Hand.