April 1, 2023

Isle of Wight Endometriosis Support

So it’s taken me a little while to get round to sending this over but here is my Endo support story so far starting with a blog post I’d written in 2019 after having my second son in 2017 https://mothersons.co.uk/?s=Baby.

Picture of hands in a heart shape over a baby bump

Picture of hands in a heart shape over a baby bump

In addition to this since my last Lap surgery in 2016 before having my last baby in Aug 2017, slowly the Endo symptoms have come back in the last year or so. I know this is different for everyone as we all know having surgery or having a baby does not cure Endo. So last year in March 2022 I went to see my GP to be referred to the Portsmouth Gynae Endo clinic instead of the Isle of Wight where I live as we have no specialists. I requested Dr Donato, however when my consultant appointment came through for the 15th November 2022 (8 month wait) I was greeted by Dr Dipper. I later found out that Dr Donato was on maternity leave. This was a good meeting and I was sent a letter of the discussions we had about my pain and symptoms. I have since been offered 2 appointments, one on the 28th Feb 2023 for an MRI of the Pelvis area. Currently waiting for the results of the MRI and a consultant appointment is booked for the 30th March 2023 where a hysteroscopy may also take place. I have a feeling that another lap surgery may be offered or possibly partial hysterectomy due to my age and having completed our family.
Anyway I’m looking forward to what the year has in store for me! Always trying to stay on the positive outlook : )

Some thoughts on how treatment and research has advanced in the last decade on the Isle of Wight – sadly, I feel that is has got progressively worse.

Whilst there appears to be a lot of awareness around Endometriosis, my medical appointments still fail to address the disease nor am I asked how I am. If I’m struggling and/or need pain relief, I must first mention the disease and then specifically request more pain relief – I am unaware if this is because its an invisible illness or they just simply aren’t aware? Regardless, it leaves me feeling awkward and uncomfortable, especially around new doctors and medical staff.

For those of us struggling with our mental health, especially in the lead up to and post surgery, there doesn’t appear to be any extra support provided nor are we provided with a contact to be able to relay any concerns to i.e pain, anxieties.

Additionally, our local hospital and GP surgeries offer no information about Endometriosis whether that be posters in the departments and waiting rooms or leaflets available to take home and whilst I have seen 3 different Consultants for my surgeries/pregnancies and fertility treatment, in the last 10 years, not one remains on the island. I am also certain that there are no Endometriosis specialists available here too.

This means that endometriosis patients are more than likely being referred to mainland hospitals/clinics which will, in turn, have an impact on the waiting lists/times. Moreover, patients with Endometriosis will struggle to find time and appropriate funds to make repeated trips to mainland clinics and appointments in turn putting more strain on services and those suffering.

Aerial view of the Isle of Wight

Aerial view of the Isle of Wight

In contrast, when visiting Queen Alexandra Hospital, Portsmouth and St Marys Hospital clinics, the process felt smoother and the facilities more modern – they even had music playing in the waiting rooms which was a nice touch! It was, on the whole, a very different approach to the disease and not one I had seen on the Isle of Wight.