I am Keisha and I am 27 years old. My journey started when I was 11 years old, when I had my first period. I was told around 10 years ago they thought I had endometriosis, initially I was told they thought I had endometriosis but I was too young to have the surgery. Not long after this, I had surgery for a womb polyp and ovarian cysts in 2012 and after much persistence several years later, a diagnosis of endometriosis was finally made.
I had been going back and forth between doctors from a young age, leaking through my football shorts in the middle of matches when I had only just been to the toilet. Leaking at school after just being to the toilet, struggling with the pain and unable to do sports which I had always done. From football to dancing I have always been active up until the last year. This is due to 2 surgeries in a short space of time and unfortunately the disease is causing a lot of issues to organs such as my bowels, meaning I am in a lot pain and lack energy.
To date I have had 10 surgeries, the last being in April 2019 and have struggled to get an endometriosis specialist to operate on me instead of a general gynaecologist.
I also have a large ovarian cyst on my right ovary and my left ovary is polycystic. Up until now I have had 1 or 2 surgeries a year as the disease is recurring and mine seems to come back quite quickly. There are not enough specialists trained in endometriosis surgery and it’s often quite difficult to access an endometriosis specialist. I am grateful to the gynaecologists as they have tried their best, I have had womb polyps, multiple cysts, endometriosis over the year and they have always given the best help they can.
This disease has had a huge impact on my mental health. In this time I lost my Dad to brain cancer and he was my main support. Since 11, my dad was always there for me and supporting me, pushing me to go to the doctor and was actually present at my first surgery. He died in 2012 after an 18 year battle with a brain tumour. I feel this disease really has taken its toll on my mental health: we all have issues in life that are thrown at us daily but when you spend every day in pain sometimes this can make any issues seem even worse.
I have tried to take my life multiple times due to this disease, mainly when I have been in pain and have had to deal with a lot of online trolling in regards to my endometriosis.
I have had difficulty getting this resolved. It has been ongoing since June 2018. I receive very abusive messages and strange phone calls. This has also happened to other people with endometriosis that I know. I feel people don’t understand, they don’t take it seriously and it is seen as just a ‘bad period.’ It is so much more than that, it is a whole body disease and can impact every single part of your body.
I think what has led me to previously try to take my own life is the feeling of being a burden. I have lost friends, family and partners due to this disease. People do not understand; they can be quite cruel when you speak about it. Annoyed when you cancel plans which can lead to resentment on their end. With this illness you need support and it’s hurtful when people turn on me for something that isn’t my fault. Calling me a liar for not coming on nights out but going out for an hour elsewhere for a drink just to get out. I sometimes don’t go if I am in pain as I don’t want to ruin anyone’s night but just don’t understand how they can be so unsupportive.
Unable to have sex due to pain has often led to arguments and bad things happening to me in previous relationships. One partner actually took my tampon out and forced himself on me, that is something that I will never get over.
I have had miscarriages; I have had to have a medically advised abortion as I was bed-bound and so poorly because endometriosis ruined the pregnancy for me.
This pregnancy came when I was in fertility treatment, it was a miracle. I was devastated when my body couldn’t handle it. Due to me needing surgery and the complications to what caused the issues in the pregnancy I had to wait for a surgical abortion. This brought me up to 11 weeks, I saw the baby on an ultrasound: it had hands, it had feet and a head. It broke me, it was my baby and I never ever believed I could be pregnant. It was very sad.
I was off work for months. I was waiting for surgery again at the same hospital for my endometriosis. I went down to half wages, I had a roof to keep over my head as I lived alone but I just couldn’t go back to work as I was so depressed. I left my partner at the time just before I found out I was pregnant and was about to inform the fertility specialist, as he was abusive. One day I just passed out so my friend took me to hospital and that is when I found out I was pregnant. I remember us both being really confused because we thought I was infertile. It was crazy. I miss that baby every single day.
Work wise, not everyone has been so supportive. I have had extended probations, sickness meetings “what are you going to do to make this better”, where you sit there knowing you can’t do anything. When I was pregnant and had to have the abortion my manager at the time reprimanded me for not using contraception. It was incredibly hurtful after knowing what I was going through. One employer has been really helpful allowing me to work from home and flexibly.
I knew something needed to change after my last surgery, so I started searching for support groups.
I was amazed and made friends with endometriosis. It felt like a breath of fresh air. In all those years after 10 surgeries I didn’t know anyone with it and felt so alone. I decided with a couple of others that we should set our own up where we meet face to face. This is when ‘National Endometriosis Sisters Support’ began in December 2017. Since then, we have won advocate of the year 2 years running from an Endometriosis UK charity ball. We have 1300 women worldwide, we have been on BBC news, ITV news, radio stations, in magazines and in newspapers. We continue to advocate for change.
I have the best friends in the whole world, they are my endometriosis sisters. Together we are stronger, we have the most amazing friendships in the group and we’ve shared many special moments together, including a trip to Disneyland, Paris. You don’t have to suffer alone! Search for people in your situation. It will be the best thing you have ever done!