What’s it really like to live with chronic illness every day? How do you deal with the physical symptoms, emotional turmoil and practical problems? In this interview series, real life ‘spoonies’ share their stories and tips.
Sophie is a student mental health nurse who suffers from endometriosis. She is currently training to hike the Yorkshire Three Peak with her husband to fundraise for Endometriosis UK.
Tell us a little about yourself.
I’m Sophie, just a few weeks away from turning 30 and I’m a student mental health nurse. I have endometriosis and recently started running an Endometriosis UK support group.
When did you first get sick?
For anyone who is unfamiliar with endometriosis, it is a condition affecting 1 in 10 women where cells similar to those lining the uterus grow outside of that area, often in other parts of the pelvis such as the ovaries, fallopian tubes, bladder and bowel. These cells react in a similar way to those lining the uterus, responding to hormonal changes in the body and bleeding when a women is on her period, causing chronic inflammation.
Endometriosis can cause chronic pain, heavy and prolonged periods, bladder and bowel problems, fatigue and infertility. There are treatments available to manage the symptoms, but there is no cure. It’s important to note that symptoms vary considerably and no two women will have the same experience or response to treatment.
I was first diagnosed in 2014 when I had keyhole surgery to remove a 9cm cyst from my left ovary. I had been suffering with long and painful periods since stopping the contraceptive pill for health reasons in 2011, and over time this got worse. I started to develop other symptoms, including terrible pelvic pain throughout my whole menstrual cycle, constipation, nausea and fatigue. I knew something was wrong and my GP referred me to a gynaecologist. An ultrasound showed the cyst and 3 months later I had surgery.
Looking back I had painful and heavy periods from the start, aged 12. However I started taking the contraceptive pill and up until the age of 25 it kept my periods under control and on reflection probably masked the condition.
In what ways does having endometriosis affect your daily life?
The effect that endometriosis has on my daily life depends where I am in my menstrual cycle. My cycle is a regular 28 days and my periods last for 11 to 14 days of that time. During my period I experience terrible pelvic pain, extreme bloating and a number of days of heavy bleeding. I also experience pelvic pain and bloating for a number of days around ovulation. I can spend a large proportion of my time with some level of pain, although some days are worse than others. A lot of the time pain management enables me to do what I need to or want to, but sometimes I just need to stay at home and rest.
Having endometriosis has affected my social life. I find drinking alcohol can cause me to have flare ups so I often avoid that, and I don’t go out as much as I used to as sometimes I just need to rest in my free time. At times I feel I miss out on things I would like to be doing due to pain and/or tiredness.
I recently had a second surgery for endometriosis to remove another ovarian cyst and am on treatment which has stopped menstruation temporarily. Although I had pain from the surgery itself, I’ve definitely noticed an improvement in my symptoms especially as I’m not menstruating at the moment.
This has given me some of my life back and has meant that some of my goals are now achievable, such as: this July my husband and I will be walking the Yorkshire Three Peaks to raise awareness of endometriosis and to fundraise for Endometriosis UK.
Without treatment I wouldn’t have been able to consider attempting something like that.
How do you handle practical problems?
I just do what I can and try not to be too hard on myself. If I’m having a busy time I try to incorporate rest where I can and plan ahead.
Do you have any tips to cope with physical symptoms like severe pain, heavy periods, bladder and bowel problems or fatigue?
Listen to your body! My body usually lets me know when I need a good rest, so I do try to listen to it and have that extra long sleep when I can. Yoga and meditation help me with relaxation and pain management, as does exercise generally. Eating a healthy diet to prevent constipation is an important part of my pain management.
I use organic cotton sanitary products and if I’m having a day at home I’ll use pads instead of tampons as I find that makes a difference to my pelvic pain. However, every woman is different so it’s important that she finds coping strategies that work for her as an individual. What works for one woman won’t necessarily work for another.
Endometriosis can have a significant impact on a woman’s quality of life. Not only due to living with painful symptoms, but a number of affected women also have to face reproductive problems or infertility, pain during sex, changes in mood and body image issues.
How do you deal with the emotional side of having endometriosis?
The emotional side can be as difficult as the physical aspects of endometriosis. It’s taken a while but I’m starting to accept that it isn’t going to go away and rather than rejecting it I try to accommodate it. I talk quite openly about my own experience in order to raise awareness and reduce some of the misconceptions that people have. I’m also lucky to have a very supportive family.
Aspects such as infertility don’t just affect a woman, but her partner too, so it’s important to be there for one another. My husband is incredibly caring and supportive, and facing endometriosis together has made us stronger.
Earlier this year I set up an Endometriosis UK support group and this has been a source of support for me as well. I find it so helpful to share with other women who truly understand and feel that we have bonded well as a group.
What do you do to keep joy in your life on a day-to-day basis?
Maintain positivity and gratitude. There are a lot of wonderful people and things in my life and I’m grateful for that. My life is more than just endometriosis.
What would you like to tell others who are diagnosed with endometriosis?
It can feel isolating to have endometriosis, particularly if you don’t know anyone else who has it. Support is out there, whether a face-to-face support group or online community. In the UK, the national charity Endometriosis UK has a number of support groups around the country and also an online support group. Details can be found at www.endometriosis-uk.org
It can feel like endometriosis has taken over your life and changed who you are, but you’re much more than someone with endometriosis, you’re still you.