The Crippling Pain of Endometriosis

Dionne, 23 from Scotland talks to Bladder and Bowel Community about how the perception of endometriosis needs to change. She explains how she feels more awareness is needed around just how damaging this gynaecological condition can be, and how important it is for healthcare givers to recognise the symptoms in young women to avoid years of crippling pain.

She kindly tells us her story, explaining just how much pain she’s had to deal with during her journey of diagnosis and treatment for Endometriosis.

From the minute I started my periods they were always so painful and heavy. I assumed this was  ‘normal’ and I held onto the fact that everyone told me it would probably “get better as I got older.” I  was in so much pain and some months the pain stopped me from going to school and left me stuck in bed. It was the type of pain that painkillers didn’t touch and it would make me vomit. 

My GP started me on the contraceptive pill in the  hope that it would ease the pain but it didn’t unfortunately. I ended up having to get anti-inflammatories prescribed. These helped sometimes but not all the time.

When I saw Gynaecology they put it down to my age and the  impression they gave was “it’s just a bad period.”

The turning point was when I had just left school and I was at a training day for a new job when the pain hit. The pain was spreading across my legs and back and I was locked in a toilet cubicle doubled over vomiting and crying because the pain was so bad. I phoned the GP and spoke to her and told her how I couldn’t cope with it any longer and that was when an emergency referral was put in.  

I saw gynaecology a few months later and the first thing they tried me on was hormones. They tried me on multiple types of the contraceptive pill. This bought me some time and I didn’t have to deal with the heavy bleeding but it brought other issues like mood changes. They kept giving me hormones in the hope that it would manage the pain but it was mostly trial and error for six years until they decided I needed to have a diagnostic laparoscopy to check for endometriosis. I remember waking up from that surgery and the doctor telling me I had endometriosis. It was a word I had never heard of and that day I didn’t realise how much my life would change. I was told my endometriosis was severe and it was on my bowel and that I would require further surgery. 

After surgery they put me on an injection called Decapeptyl. This injection would stop my periods and put me into a chemical menopause and alongside that I would take HRT. It was strange as I was 20 years old and experiencing menopausal symptoms and trying to explain to others why I was having a hot flush was difficult. I then went on to have three further  surgeries and that was when I found out my endometriosis was deep-infiltrating and was stage 4.  

Dionne explains how endometriosis is not just something that has caused significant pain and disruption to her life, causing overactive bladder, urinary tract infections and going on to experience urinary retention.

She explains how it developed, later causing issues with her bowel as well.

Endometriosis has an impact on my bladder and bowel in different ways.

In terms of the bladder it has had quite a severe impact. It was after my first surgery that my endometriosis progressed and my bladder became impacted by this disease. It caused my bladder to become overactive and there would be some days and nights when I was stuck in the toilet, but luckily medication has helped this side of things. I also experience recurrent UTIs and find I’m on antibiotics a lot of the  time. At the start of the pandemic I went into urinary retention. I had to go to A&E, they scanned me and found I had over 700mls in my bladder. I have now been taught how to self catheterise and this is something I do up to 5/6 times per day.

Endometriosis also causes issues with my bowel. It can make going to the toilet really painful. The symptoms are similar to irritable bowel syndrome, which is what they thought I had, but during a laparoscopy they found I had endometriosis on the bowel along with rectovaginal endometriosis. Rectovaginal endometriosis is one of the most severe and painful forms of the disease. Surgery had to be carefully planned and discussed at the MDT meeting and I was told about the risk of having a stoma bag but luckily, they were able to shave my bowel instead of doing a resection. My bowel became stuck to my uterus which caused severe pain and there were days it wasn’t manageable so I had to go into hospital to have IV morphine. 

Living with endometriosis is difficult and I’ve had to learn how to cope with constant pain. Each day I have to take different medications in order to function and have some sort of life. It can feel like you are just existing and not living. I have supportive family and friends around me which does help. When you become chronically unwell you notice who your real friends are and the ones who have stuck by me at my lowest points, I will always be grateful to them. I have an endometriosis nurse specialist, who is always at the other end of the phone if I need any advice. My GP is brilliant also and tries to put things in place to help me manage my condition at home.

I’m also one of the leaders of a support group called Endo Warriors West Lothian and meeting others who understand my condition helps so much. I  have to be honest that there are days when this condition gets me down and I feel devastated by it but it’s the love of those around me that gets me through those days. 

I feel that there isn’t enough support out there for those who suffer from Endometriosis. For years I have had to fight to be listened to and get the care and treatment required.

I have felt dismissed by professionals and I’ve had times where I’ve been told “it’s all in my head” or it’s “phantom pains” and I’m not the only one who has experienced this.

I started up an Instagram page and get messages from younger girls who have symptoms and are struggling to cope with it all. It’s heartbreaking hearing about how they are being dismissed. The lack of available support is what keeps me determined to continue to raise awareness. I hope to become an Endometriosis Nurse Specialist as women’s health is a topic that interests me.  

The advice I would give to anyone that’s struggling with symptoms and haven’t yet been diagnosed is keep pushing until someone listens.

I know it is exhausting and upsetting but early intervention is so important. Support is crucial with this condition. It can be a struggle mentally and emotionally but you don’t have to be strong all of the time there are people around you who care and will listen. I’ve found support groups a big help and also social media as I’ve connected with other people who have the condition and it helps having people who understand. 

Further Information

Dionne has an Instagram account which is @endowarrior_x and is happy to speak with anyone who is worried or has any questions. She urges others not to be afraid to reach out for support.

Find out more information about endometriosis symptoms and treaments available.

If you are struggling with any of the symptoms described in the article, it is important to make an appointment to visit your GP.