Living with endometriosis: Keisha's story

How long have you been living with the symptoms of endometriosis?

My journey began when I was 11 and I had my first period. Right from the start I was bleeding really heavily and in a lot of pain.

I have always been very active, but my symptoms started to get in the way. I would leak through my football shorts while playing, even if I had only just been to the toilet. I also had intense pain that made it hard to carry on as normal.

It was my dad who pushed me to see a doctor, and over the years I went back and forth between different GPs, but it wasn’t until I was 17 that someone first mentioned endometriosis.

How did you eventually get your diagnosis?

When I was 17, I was told I probably had endometriosis but that I was too young to have surgery, though not long after I did have surgery for a polyp on my womb and ovarian cysts.

I kept pushing for answers and eventually – after much persistence – I did have a laparoscopy to confirm diagnosis.

What treatment have you had since your diagnosis?

I’m now 28 and to date I have had 11 surgeries for endometriosis.

As well as endometriosis, I have had surgery for ovarian cysts, and I have PCOS (polycystic ovary syndrome). Since my first procedure, I’ve had one or two surgeries every year. Endometriosis is a recurring disease and mine seems to come back quite quickly.

One issue I have had is that I struggled to see an endometriosis specialist (unfortunately many people have this problem). I am very grateful to every single gynaecologist who has helped me over the years, I know they have always given me the best help they could. However, until recently I was treated with ablation surgery.

Ablation surgery is not the preferred method among specialists, because it often misses the root of the issue. Excision surgery is what is considered the gold standard for treating endometriosis. My first nine surgeries were ablation, and then when I saw a specialist for my 10th procedure he found that my previous surgeries had not removed the diseased tissue and, unfortunately, had left scar tissue.

Last year, I had excision surgery with an endometriosis specialist and it has helped massively. I still get flare-ups now and again and I am still in pain every day but, compared with before, my symptoms are nowhere near as bad.

How has endometriosis affected your life?

Living with this condition has impacted my life in so many ways. I think for me, the physical issues have always gone hand in hand with psychological problems. This disease has had a huge impact on my mental health.

I’ve suffered with chronic pain for years and I’m often very tired and lacking energy, making it hard to do the things I love. We all have issues that are thrown at us in life, but somehow when you spend every day in pain, everything seems even worse.

People don’t understand, they think it’s just period pains but it’s so much more, it’s a whole-body disease and it can impact so many aspects of your health. The lack of understanding can be so isolating.

It’s been even harder since I lost my dad. He was always there to encourage and support me and he was even there for my first surgery, but he lost his battle with brain cancer in 2012.

Living with endometriosis has felt like more than I can bear. I have tried to take my life multiple times.

I was driven partly by pain and partly by online trolling that I have had to deal with. I receive very abusive messages and get strange phone calls (this has also happened to other people I know with endometriosis). I have tried to deal with the trolling but I have struggled to get it resolved, though it’s been going on for years. I feel like people just don’t get it.

How has your illness affected people around you?

I think a big part of what led me to try and take my own life is the feeling of being a burden. I have lost relationships with friends, family and partners due to endometriosis.

People don’t understand and they can even be cruel when you speak about it. They get annoyed when you cancel plans, and after time they resent you.

With this illness, you need support, but it takes your support network away from you. It’s so hurtful to be turned on for something you know you can’t help. I’ve been called a liar for not coming on a big night out but then going out for an hour elsewhere. But even if I feel too ill to do something big, I still need to get out of the house sometimes.

To be honest, I cancel or turn down invitations sometimes because I don’t want to ruin anyone’s night. But then I still feel like I’m blamed for something that’s not my fault. I don’t understand why some people are so unsupportive.

Endometriosis has also affected my fertility. I have had several miscarriages and once had to have a medically advised abortion as the pregnancy left me so ill that I was bed-bound. I had been having fertility treatment but was about to stop because my partner had become abusive. But one day I just passed out and when my friend took me to hospital I found out I was pregnant. I was so confused, I didn’t think I could get pregnant.

I wanted that baby so much, but my body couldn’t handle it. I badly needed endometriosis surgery and there were multiple complications impacting the pregnancy. I was so ill, I had to have an abortion. I had to wait for a surgical abortion because of the circumstances, meaning I was 11 weeks pregnant. I’d had an ultrasound and everything. I never even believed I could get conceive and now I had to terminate the pregnancy. I miss that baby every day.

I was so depressed after the abortion, and I was still awaiting endometriosis surgery, I just couldn’t face going back to work. I was off work for months, I went down to half wages. In the end I had to go back just to keep a roof over my head.

Have you been supported in the workplace?

Work wise, not everyone has been supportive. One employer has been amazing, offering me flexibility and really helping me, but so many have not.

I have had extended probations, sickness meetings, “what are you going to do to make this better” conversations where I’ve just had to sit there knowing there was nothing I could do.

The manager I had at the time I got pregnant and had the abortion told me off for not using contraception. Considering they knew what I was going through, I was shocked and incredibly hurt. Endometriosis is not something I can control yet I so often feel like I’m blamed for it.

What made you reach out to other sufferers? How was NESS born?

Eventually, I knew something needed to change, so I started searching for support groups.

I was amazed at how many people were out there going through the same thing. I made friends with other endometriosis sufferers and it felt like a breath of fresh air.

I’d been through 10 years and so many surgeries without knowing anyone else with this illness. I’d felt so alone. I didn’t want anyone else to feel like that, so along with two other women I decided we should have a place to meet face to face.

NESS (National Endometriosis Sufferers Support) was born in December 2017. Since then we’ve won advocate of the year twice at the Endometriosis UK annual charity ball.

We have more than 2,000 members online, from all over the world. We’ve been on BBC News and ITV News and been featured on various radio shows as well as in magazines and newspapers. As well as being a place for sufferers to connect and support each other, we also advocate for change.

Without increased awareness and better access to specialists, people will continue to suffer more than they need to with this horrific condition.

What advice would you give to people who have (or think they have) endometriosis?

You don’t have to suffer alone!

Reaching out to other people in the same situation changed my life. It will be the best thing you have ever done.

I have the best friends in the whole world, my endometriosis sisters. Together we are stronger, we have incredible friendships and we support each other no matter what.

We’ve shared so many special moments together and we are always there to support each other and any other people in this situation. You are not alone.