Endometriosis can be incredible isolating. Here, two of our volunteers share their experiences of the effect of endometriosis on their social lives.
Rhiannon is the group leader of our Tunbridge Wells support group. She was diagnosed with endometriosis after struggling throughout secondary school. Here, she discusses how endometriosis has impacted on her social life.
“At 19, being diagnosed with Endometriosis felt like the worst thing in the world.
My symptoms started at the peak of my secondary school life. I had always been active, so a sudden decline in my being able to participate in things saw me lose parts of my personality and I noticed that ‘friends’ wouldn’t include me in as much. Now my support network is more understanding as they’ve been around me through most of my fight and at my darkest times but I know it’s been hard for them too.
I was meant to be fun loving and fancy free- which I tried my hardest to up keep but sometimes it really was just too hard. Throughout my battle for the last 11 years, I’ve had to miss out on so many aspects of ‘normal’ life due to endo that you can’t help but feel resentful. I’ve found myself missing out on work, meeting friends and even weddings due to operation recovery time, not to mention not seeing family or celebrating birthdays where I’ve been too sore to move. As much as I try to be the bigger half in this battle and think of myself as quite strong, unfortunately it wins a lot more than I do.
Even when you’re not in pain, you can feel so tired that you genuinely don’t have the energy or desire to want to take part. I try so hard to be ‘active’ and involved with my peers that I often find myself pushing myself to do things and then realising once it’s over, that I’ve exhausted myself. A flare up at that point can almost bind me to my house and relationships can decline over time when you are suffering
I’ve had countless laparoscopies both before and since my diagnosis, each time meaning I have a recovery time where I’m not myself. I’ve tried Zoladex injections and, at 29 years old, going through a menopause had an effect on my day to day socialising. Luckily my friends and I found the humour in it and thankfully I was able to cope better than I thought I would.
Without my husband, friends and family, not to mention my determination to not let it make me miss any more of my social life, I honestly don’t know what I would do sometimes. It can be a very lonely condition with you feeling like you are the only person in the world and this doesn’t ease when you find your social life becoming less and less. Although it has resulted in me missing out on lots, it’s also raised the awareness of the condition amongst my friends& family - something which we all need to keep pushing.”
Karen is the leader of our Renfrewshire Support Group and suffered with the symptoms of endometriosis for 12 years.
“I led a very busy and active life and felt that endo was beginning to take over. My first laparoscopy confirmed I had moderate to severe endo and PCOS and I was told if I had been 10 years older and had a family they would carry out a hysterectomy.
I had about one week each month when I felt relatively ok. The week leading up to my period I was in agony, severe lower back pain, cramps and pain in my legs. I would bleed heavily on average 7-10 days each month. Those days were the worst, I was so tired and whilst I struggled into work most days, my social life was almost non-existent! I would come home and curl up in bed with a hot water bottle and dope myself up with painkillers. Most weeks I would try and have a couple of games of badminton but soon this was not possible as playing only aggravated my symptoms. I found I could do very little other than go to work. I have a large circle of friends but only two close friends knew the full extent of my illness; after all it not something that comes up in topic of conversation. I tried to go out as much as I could but, unless I was in my ‘good week’, I would more often than not end up cancelling plans.
I would get short spells of relief from some of the treatments I tried but the dreaded pain would always return. My life revolved round doctor and hospital appointments and by 2012 I had had enough, I could not plan ahead and my social life was non-existent, endo was taking over my life. I could no longer play badminton, go for nice walks or do anything other than go to work. I had tried for so long not to let endo control my life but this was no longer possible, I had to admit defeat at the age of 41. After much thought and soul searching I finally made the decision to have a hysterectomy. In January 2013 I had a Total Abdominal Hysterectomy which was to change my life for the better! Five weeks post op I felt better than I had done in years and thankfully this has continued. I lead a busy life, my circle of friends has grown, I play badminton every week, I go out walking and even manged to climb Goatfell on Isle of Arran – something I could never have done previously.
Whilst recovering, I came across the Endometriosis UK website and saw they were looking for volunteers to help support others with this horrible condition. After a weekend of training, I set up the Renfrewshire Endometriosis Support Group, which has now been running for two years.Not only have I got my social life back, it’s better than it has ever been as I have made lots of new friends through running the group and feel at last I have a purpose in life again, through sharing my knowledge and experience with others.”