Carly’s Story

Member Story: Carly

Carly Stewart’s Story, Age 24, currently residing in Swansea, South Wales

My story starts in Farnborough, Hampshire, England

My symptoms started when my periods started at eleven, just before secondary school. I experienced pain most days, across my lower back and right hand side.  My periods were extremely heavy and I had to take iron supplements. Although heavy, for at least two or three years they were consistent. Unfortunately, the pain was consistent most days too.

– I was given physiotherapy several times but this just increased my pain. The doctors and therapists thought my pelvic pain was not related to anything else but, as prodding that area just made the pain much worse, I’ve since come to believe it was related to my endometriosis.

– I started regularly visiting my GP about my periods and pain from the age of about 14, but it took up until the age of 20 for me to finally get a referral to a gynaecologist, and this was only because I finally got up the courage to demand it. Almost a decade after first going to my GP for help and, still, at no point had endometriosis been suggested.

– I finally got to see a gynaecologist – not an endometriosis specialist. I was given the contraceptive pill Microgynon 30 back to back for three months but there was no change at all in the level of pain I was experiencing. I was then referred to have a diagnostic laparoscopy.  All in all, from my first gynaecology appointment to the diagnostic lap. I waited 9 months – and, remember, a diagnostic lap. is only to see what’s going on – it isn’t usually an operation to PROPERLY treat actual endometriosis because surgeons only have a very limited amount of time in which to perform these operations.

– I had the diagnostic lap. in May 2012. Endometriosis was found in my pouch of Douglas (the area between the rectum and uterus). It is usually a sign of significant disease – and also my right ovarian fossa. All of the endo was ablated with helica vaporisation (where high energy heat is used to turn tissue into vapour). This is not the surgical technique to use for large areas of endometriosis. It should only ever be used in very small areas like the ovary where it would damage the ovary to use other methods. Ablation is useless – and damaging – for wider spread cases like my own.

I should have been given excision – cutting out of the disease – the best, most effective treatment – which should be used in 99% of endo. cases. However, this was a diagnostic lap. with a non-specialist…Widespread ablation (or burning) is much, much quicker than proper excision – it gets patients in and out of the hospital very quickly (although this usually means they will be back again a year later). However, I didn’t know any of this then. I didn’t know that there were specialist centres in England which performed excision, and that ‘regular’ gynaes would routinely ablate or burn disease, making things far, far worse, and requiring repeat surgeries year after year after year.

Needless to say, my pain and symptoms continued after this operation.

It was after this that I moved to SWANSEA, Wales.

– I saw a GP about my endo. diagnosis, treatment and continuing problems but he refused to believe the findings from my surgery in England. He seemed to think that as it had been treated, I must now have IBS. The medication he gave me for this made my endo symptoms so much worse. This was Mebeverine and I took this for roughly three months before giving up due to the fact it was making matters worse for me.

– I returned to another GP at the same surgery (unless specified, you don’t choose which GP you see in my surgery) who then told me that because I was sexually active (had been with my partner for three years who is now my fiancé) I must have a sexually transmitted disease. I was told to avoid sex to avoid endometriosis continuing.

– In desperation, I saw another GP at the same surgery. This one referred me to another regular gynaecologist, not a specialist at a BSGE centre. I waited 9 months for an appointment, in terrible pain.

– When I finally saw the consultant, he made me take Zoladex, a very powerful hormonal drug. I had three injections of one-month dosages of this. It made matters worse. I was having extreme hot flushes and passing out with how warm I was getting whilst working in a very busy fast food chain. Extreme pain across my stomach, lower back and going down my legs stopped me from being able to walk on them which was a new place for me to be continuously hurting. I started to bleed from my back passage at around this time too. All of these symptoms have stayed with me since having this treatment two years ago.

– When I told the consultant that the Zoladex hadn’t worked, he discharged me, telling me that if my symptoms hadn’t gone away whilst taking it then my problem couldn’t be endo. I have since learned that Zoladex is wholly unreliable as a diagnostic tool for endo. even though lots of doctors try to use it that way. Countless women carry on having symptoms – or more problems – whilst taking it, and then find out in their next surgery that they DO have endo. This gynae. told me that as it couldn’t possibly be endo, he’d refer me to a stomach specialist. He didn’t explain why, and as it turned out, he never did refer me. I waited a year in continuing pain, only to be told by my GP that I’d been discharged with no follow-up, no treatment plan, no referral, no information – nothing.

– My GP then referred me for a second opinion – but at the same hospital with another regular gynae. That was last year. Finally, in November 2014, I got to see him and he said I would need another operation to see what was going on. He told me I was an urgent case, but I am still waiting. I’ve had two pre-op appointments in this time.

– I would like to go to a BSGE specialist centre to have my endometriosis excised / cut out as I have learned that this is the best way to treat the disease and potentially cure it. However, because I live in Wales, where there is only one centre – in Cardiff, I know it’s unlikely I can be seen there. The GPs here don’t tell patients about these centres, firstly because most of them don’t know about them, or if they do, they’re not allowed to send patients there unless they live in the locality. In Wales, the health boards say you have to be treated in the hospitals in your area, and I live in Swansea, not Cardiff. Even if I could get to use this centre, because it is the only one in Wales (and women are not normally allowed to use the 45 centres in England) the waiting list would be very, very long – on top of the years of waiting I have already endured.

Currently my symptoms include:
– pain on both sides of stomach and back.
– Pain down both legs
– fatigue and exhaustion even from small tasks.
– bleeding from my back passage (a symptom of endo. on the bowels / rectum)
– waves of brain fog. This is where I can’t physically think for myself or I forget what I’m doing due to the amount of pain I’m in. It made the third year of my degree incredibly difficult.

Sometimes, it all gets so bad that my partner has to care for me. I’ve had to quit my current job.

I am only twenty-four and I feel like most of my life has been spent suffering, with nobody listening to me, or treating me properly. I am due to get married and would like to have children – but endo. if it is allowed to go on for as long as mine has – not only causes continuous, unbearable pain, but might also have made me infertile. I will then need fertility treatment on top of all the problems that ineffective surgery / treatment has caused me.