14 Years For an Endo Diagnosis

My advice

I would like to tell anyone suffering from endo that they’re not alone and to keep on fighting. Bug your GP over and over. You deserve to be heard. There are also amazing support groups and pages out there. Reach out, and don’t be feel ashamed or afraid to tell your story.

My recommendations

My story

The pain started when I was 18. I am now 32, so 14 years it has taken for a diagnosis AND that's because I took this private. My journey has only just begun, despite being in pain for so many years.

As a teenager I experienced heavy periods and bouts of cystitis. At 18 I first started bloating and started the contraceptive pill.

At 19 I was extremely fatigued, with pain in my legs like I had just run a marathon, heart palpitations and I was out of breath. Urinary Tract Infections (UTI) soon followed.

This continued for years and at 20 I also started suffering Irritable Bowel Syndrome (IBS) and exhaustion after most meals. It was impacting my ability to work, and I had to move from full time to part time employment.

At 22 I passed out. This was the first occasion of many. The following year I passed out at work and experienced extremely painful diarrhoea after my lunch.

At 24 my UTI's were out of control. I was bleeding and crying in pain. I was on fire. I went private for a cystoscopy and a bladder distention. However, this didn’t improve the situation and I continued to pass out. I started becoming self-employed so I could have more control over my working hours.

At 25 I had allergy tests at the private clinic at Harley Street. They reported that I had IBS and was intolerant to lactose, so I cut all dairy from my diet.

For the following five years, despite changing my diet and cutting caffeine and alcohol, I continued to experience IBS, UTI’s and was still passing out.

I felt overwhelmed with the situation and at 31 I investigated my stomach issues further eliminating gluten and refined sugars. I also started reflexology sessions with a local specialist which helped reduce my pain.

Just before I turned 32, I paid for private tests including an MRI and was diagnosed with severe endometriosis of the bowel. They identified two large nodules (lumps) and several lesions and advised bowel surgery.

Lately my symptoms have been getting worse. I can’t keep food down a lot of the time, the cramps are unbearable, and they give me hot sweats and make me dizzy. I get bad headaches and horrible back pains. I am scared to leave the house in case I pass out or cannot get to a toilet. Naturally this makes me anxious.

I’m doing what I can to stay well. I eat sensible and try to walk when I’m not too fatigued or weak. However, I’m relieved to know what the issue is now and hopeful for my upcoming laparoscopy with the NHS (a laparoscopy is a type of keyhole surgery where they try to destroy or cut out the endometriosis tissue). Feel free to follow my journey on Instagram!