Hospital not helping : I’ve suspected I... - Endometriosis UK

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Hospital not helping

Jjones4252
Jjones4252

I’ve suspected I have endo for the past few years, pain started 5 years ago when I was 13, gps brushed me off until I put my foot down and demanded a referral, gynae consultant booked me in for a lap about 2 months ago with a 3-4 month wait. Within that time I ended up in a&e with a ruptured cyst, scan found another only 3cm so said to wait and see however I am extremely petite and basically have the body of a 10 year old, so have the idea that my organs are a lot smaller than avg adult, which is why cyst is so painful to me as although it is only 3cm it is affecting me more. Ended up back in a&e yesterday and day before, first time sent home with pain relief and scan booked for a week later but had to go back as I couldn’t walk and was admitted for the day and had an emergency scan which just found the same cyst. Doctors were fab but just sent me home again and told me to wait for laparoscopy. I am beyond fed up, can’t get through to my consultant to ask whether lap could be sped up as I still don’t have a date. I have an appointment half way through jan but I just don’t think I can wait, I’ve missed weeks of uni and have been off work for over a month. Could anyone recommend what to do? I feel awful going back and forth to a&e but I can’t wait over a month to speak to consultant 😩😩

3 Replies
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Hiya,

Unfortunately the NHS (guessing you’re in the UK) is just like this. The waiting lists are enormous and bigger cases such as cancer patients having emergency hysterectomies etc mean our cases get pushed back.

I am also a small frame with a 5cm cyst and fibroids and waiting for my second laparoscopy. Just keep phoning up and asking politely but firmly. Get the consultant’s secretary’s phone number and email address.

In the meantime, go to your GP for 1) a hormonal treatment if you’re not already on one such as taking a low oestrogen pill for 3 months on 1 week off cycles and 2) a powerful prescribed painkiller such as codeine or a paracetamol and codeine mix.

You’ll get seen don’t worry 🙂 painkillers, sleep, hot water bottles, zero caffeine, limited alcohol, smaller portions and peppermint tea will get you through xx

Thanks, managed to push my appointment forward to today and told lap would be 6 weeks. My kitchen has turned into a mini pharmacy with codiene and other pain relief but just knocks me out so can’t function on it. I feel awful kicking up a fuss with other patients but even family members who was a matron at the gynae hosp im under has told me the only way to be listened to is basically harras the staff until I am sorted. I’ve been on the pill since I was 14 which helps with the bleeding but tried about 6 different types and some completely disagreed with me. They’ve mentioned I get a coil but from family experience and my own with the pill I said no as I’d rather find out the cause and go from there xx

If you go to your gp ask them to send a note to your consultant and ask for your lap to be moved up because of the severe pain. I was waiting for 10 9 months with no date, and after my drs apt I had a date within a month. Always worth a shot! Xx

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