Endometriosis - my invisible pain

In February 2008, I first started experiencing pain in my sides which was later found to be endometriosis. I was 24 years of age and I thought the pain would disappear after a few days.

However I could still feel the pain three weeks later and I decided to see my GP about it. It was revealed that I had ovarian cysts. I was relieved in a way that the reason for my pain had been found.

These cysts were removed by laparoscopy and my gynaecologist at the time categorically stated that I did not have endometriosis. After the surgery I surprised that I was still in pain and at my 8 week follow up consultation, my gynaecologist was utterly shocked to hear I was not fixed.

It was discovered that another cyst had come. I was told that I would have to wait and see if it would go away by itself , so I did but the pain symptoms (in quite unimaginable places) were getting worse.

I persisted with my gynaecologist who admitted me to hospital and scheduled another operation. I had to go through an extremely painful internal examination, but just before I was due to have the operation an ultrasound showed that the cyst has disappeared!

This turned my world upside down. How could the cyst have gone as I still felt pain? I remember fearing that people would start to think I was making it all up. My doctor sent me on my way saying that I was an ‘enigma’ and all he could do was prescribe me the contraceptive pill in case my problems were of a gynaecological nature.

I was left with no other option but to find a new gynaecologist. The pain symptoms were becoming stronger and I was struggling with the recent stress and upset.

A trip to A&E was a disaster which again subjected me to another excruciating internal examination and dismissal with no cause of my pain being discovered.

I managed to secure a last minute appointment with another gynaecologist and he found that the cyst was still there. It was subsequently removed and after another operation in the space of two months I was told that I had stage two endometriosis.

This endometriosis was lazered away but again the pain remained. I was advised to take Prostap as treatment for three months.

After deciding that I was not yet ready for Prostap, I started treatment with the Mirena coil, but my short experience with the Mirena coil came to an end after I did not feel any pain relief (my pain diary will verify). My pain was still as constant as ever, so I sought the treatment of another apparently very experienced gynaecologist.

However my world came crashing down when this doctor denied that I ever had endometriosis at all. He removed yet again more ovarian cysts and said I should now be pain free.

I had no other option but to return to my doctor who had diagnosed my endometriosis initially and I explained my ever persistent pain. I agreed to have another operation but again was devastated when the doctor could not find any reason as to why I was in pain. I’ll never forget after this laparoscopy feeling so low. I had felt so much pain leading up to this operation.

I had no other option after this laparoscopy but to take the Prostap injection. This significantly helped my pain but alas the pain relief was temporary.

I asked for an MRI some months later and this all came back clear, however another subsequent laparoscopy revealed more endometriosis.

I suppose my story shows how elusive endometriosis can be in being visualised. Even though I have had it seen and removed twice, I have lost count of scans and operations I have had since being first diagnosed that come back clear.

All I want is to be believed and for doctors to understand my pain so that they can help me. Endometriosis is an enigma and doctors need to understand this instead of telling us girls that they can’t help us!

This is a long journey for me and I am not sure of what future challenges I will experience with endometriosis but I will not give up and continue to strive for the best possible quality of life x