Natalie's Story

At age 16 I collapsed at home due to what I named The Pain.  My sister who was aged 11 had to help me to bed where I stayed for the remainder of the day.  I wasn't sure what this internal dragging sensation that made me feel feverish, nauseous and dizzy was.  There was nothing that made The Pain any better and I managed by curling up into the foetal position and waiting for sleep to take me away from it all.

The Pain was not linked to my monthly cycle and would strike at any time.  I went to my doctor and explained that I had these episodes and had no idea what was causing them.  I was told that I had constipation as I only had a bowel movement once a week.  When I explained that whilst this was a problem for me it was not the source of The Pain my GP seemed uninterested and unwilling to spend any further time to look into it.

Fast forward a few years when I returned to the doctor when my periods became a month long with very few days break.  Despite being on the Pill and being able to "manage" my cycle better it was not the case.  I was advised to try the contraceptive injection which made my periods lighter but I spent the whole month spotting, which is less draining than a month long period but, still not the ideal.  I returned to the Pill after two years on the injection.

My 24th year was my most Endo disruptive.  The Pain was still able to bring me to my knees but was not as intense as when I first experienced it.  The only problem was that The Pain was now more frequent.  I spent more time than I care to recall trembling on the toilet waiting for the symptoms to subside.  It was only when my then Boss told me that his wife had endometriosis and told me to insist on an ultrasound that I had a name for The Pain.  I immediately googled endometriosis and found that I ticked all the boxes so booked an appointment to see my GP.

I was reluctantly referred for an ultrasound and a few days later was called at work by my doctor to be told that some cysts had been found but also a heartbeat!  I was told that the cysts were the cause of my discomfort and that they were likely to burst during the pregnancy.

Eighteen months after my son was born I was sitting in a bar with my partner when I had the worst dragging sensation I had experienced in a while and when I got up to go to the toilet I found that I had really heavy bleeding despite not being due on my period.  I sat and cried in the toilets as I realised that The Pain had returned and so the diagnosis of cysts was unlikely to be correct.

I had various appointments, consultations, ultrasound scans, prodding and pokings to find out what the cause was.  I was told that my left fallopian tube had a tear in it and was slightly detached and that this had been caused by an STD.  I have never had an STD in my life and was insulted to have been told that this was the cause of my problems.

As a result of the ultrasound I was later referred to a consultant at Whipps Cross hospital as the symptoms were back to the way there were before I had my son.  I was told that a laparoscopy was the only way to be able to tell what was really going on with me.  I was petrified of going in for surgery but I also wanted help to enable me to be a happy, healthy, active Mummy and girlfriend.

A month before my 30th I went into hospital and had my laparoscopy.  When I came round I was shown pictures of the severity of my recto-vaginal endometriosis and what had been removed during the surgery.  Once the discomfort of the surgery abated I felt a lot better and managed to enjoy almost two years without any pain at all. 

With the pain came the most horrendously heavy monthly cycles I have ever had.  I was reduced to sitting on bathroom towels in the car and had a number of very embarrassing walks from the office to the car with stained clothes.  We had relocated to Manchester so I visited my new GP who due to my history immediately referred me to a consultant who then suggested Prostap. 

The consultant explained that I could possibly be pain-free for between 2-4 years once through the temporary menopause that Prostap induces but I would need to think about having another baby and then I would require a full hysterectomy. 

Within a day of my first Prostap injection I was suffering with the night sweats, hot flushes, insomnia, emotional outbursts and everything else that comes with menopause.  For my son and partner it was not an ideal 6 month period but I had no pain whilst on Prostap which meant although I would burst into tears when discussing where to buy an ice cream I was able to be out with them without being uncomfortable. 

I had my last injection in November and my periods returned in February.  I have started getting the niggling stabbing pain that stops me in my tracks and have been reluctant to return to the GP as I don't want to have another laparoscopy.  Following my second laparoscopy in August last year I had trouble breathing which resulted in hospitalisation, a clot on my lung and a month off work. 

I was really pleased when I saw an email from the Manchester Endometriosis Group asking for volunteers and emailed straight back as I fit all the criteria.  Phil called me shortly afterwards and explained what he was trying to do by running the clinical trial.  He gave me time to think about whether or not I wanted to go ahead.

Yesterday I had my first session with Phil.  He was very friendly, open and understanding.  He managed to hold the session with my very inquisitive six year old chatting away.

My muscles feel a lot tighter today and the urgent signals seem to have calmed in my bladder.  I have had a couple of stabbing Endo pains today but it's early days and I am excited to post on the blog about the experience.  Good and bad.