Melina's Story

I started suffering with period pains when I was 17. I would be at work and all of a sudden I'd be in so much pain that I would get tunnel vision and almost pass out. I was under a male doctor at my local practice and, although this didn't bother me, he didn't seem to understand what I was going through. He told me it was just period pain and recommended I take some painkillers and it would go away.

I followed his advice for about six months, but the pain didn’t get any better; I was experiencing pain for three out of four weeks of a month. I went back to him and tried to explain my discomfort, but he was dismissive once again. I'd made my mind up that I wasn't going to leave his surgery until I had a proper answer. I asked him to refer me to a specialist, which he reluctantly did. I was feeling hopeful that a second opinion from a gynaecologist would finally get me some answers.

My appointment came through for a consultantion in 18 months time. I was beside myself with anger. I had explained how bad my situation was, my work was being affected, and yet I had to wait 18 months to talk to someone about it. I decided to seek my second opinion from a private consultant and that very same evening I was due to go and see a gynae specialist. He was a lovely man, and he put me at ease as soon as I walked into his consultation room. After a brief medical history and examination he said that he thought I might have a condition called endometriosis and that the only definite way to diagnose it was with a laparoscopy.

I walked out of his surgery that evening with the answers I had so desperately needed. He listened to me and did not make me feel that it was all in my head. I was elated.

As I did not have medical insurance I would have to pay for the operation myself. The consultation had been somewhere in the region of £150 and was worth every penny, but the laparoscopy would cost £3,500. This was a hell of a lot of money, but I couldn't wait 18 months for the NHS so I scraped together what I had and went privately.

My operation was booked two weeks later. In the time leading up to my operation I did a lot of research on the internet about endometriosis, reading forums and messages from other sufferers experiencing exactly what I was going through. On the day of my operation I was very nervous. The hospital staff made me feel comfortable and answered any questions. After the operation my consultant explained that they had found the endometriosis, some cysts and adhesions. It was a massive relief to know that I hadn't been making it up and that there was actually a medical condition behind my symptoms. They removed all the endo that they could and I was to start Zoladex injections.

The injections worked brilliantly for about 18 months and then the pain started to come back. I had to go through the NHS as I didn’t have the funds to pay for private healthcare. After a consultation it was decided that I needed another laparoscopy. Again, moderate endo was detected and removed, and I was started on a course of Zoladex injections. This time it took just six months before I started to experience pain again. I went back to my consultant who suggested that I try the Mirena Coil. This was one of my last options other than a hysterectomy. I was 28 at the time and, having no children, a hysterectomy was definitely a last resort for me.

I had the coil fitted, an experience that I found extremely painful. Within a month of having the coil fitted it was affecting my mood, my weight and my skin. My libido had dropped so low that I couldn't even bear my partner at the time touching me. I persevered for six months to let it settle down. But nothing changed. I was given oral morphine to try and calm the pain, but this just made me feel sick and sleepy, masking the underlying problem.

I went back to see my consultant, in tears, begging him to sort something out. He said that he would arrange for another laparoscopy. My appointment came through and it was for six months time.

During this period of waiting I almost collapsed at work one day due to a very bad pain experience. My doctor told me to go straight to A&E. I was given a strong pain relief injection and referred to a gynae ward within the Maternity Hospital, where I waited for four hours before being transferred to a normal ward. It struck me as rather insensitive to place a woman with a condition that could affect her fertility in an environment where she is surrounded by heavily pregnant women. The doctors wanted me to have an ultrasound in the morning to check for cysts or anything else that may have been causing me problems.

My consultant was away on holiday, so I was under another doctor. He told me that he thought the ultrasound would be a waste of time. I asked if I could have it anyway and he agreed. As he predicted, it didn't show anything, but endo doesn't normally show up well on scans. I was still in absolute agony but the doctor wouldn't prescribe any stronger drugs.

The doctor returned with his team later on that afternoon and what he said to me still shocks me immensely. He stormed into my bed area, flung the curtains closed and said: "well, there's nothing more we can do for you, you need to go home. You are causing us a risk of MRSA and we need your bed for genuinely sick people." He turned to his colleague and shouted "Discharge," and then walked away. We all have bad days, but the way he spoke to me was absolutely disgusting. I had gone into hospital with pain, which I still had, and was asked to leave. He made me feel like I was making the whole thing up. I did as he said, packed my bags and went home. The whole experience still makes me angry and his utter lack of understanding baffles me.

Two weeks later, I went back into hospital for my third laparoscopy and to have my coil removed. I was surprised to hear that they hadn't found any endo, cysts or adhesions, just scar tissue from previous operations. They believe that I now have nerve damage caused by the endo. I am now back on the Zoldex for six months to see if that can keep the pain at bay; otherwise I will be referred to a Chronic Pain Clinic.

So, although I still have no answer as to how to cure endometriosis, I am just starting out on a new unknown journey!

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