I was diagnosed with endo through laparoscopic surgery in December 2021. I had symptoms for 5 years and waited 2 years for the surgery alone. I also have PCOS and Hypothyroidism. I take 2 x Cerelle pills a day to control bleeding but just recently this has stopped working and I’m bleeding even despite taking the pills…I am being referred to a gynaecologist but just feel really lost as they might do another surgery. I am worried about work and what jobs I’d be able to do in the future as my condition isn’t currently disabling me - the pain is so bad my partner has had to help me up the stairs and I’ve nearly fainted many times. I take was prescribed 2 x codeine every 4 hours but it’s been 6 days on this flare up and I have no pain relief yet. Has anyone experienced anything like this before?
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It’s good you’ve had a referral, you don’t have to have surgery but they need to investigate the bleeding. Have you had an ultrasound or other scan? If not your GP should do this at the very least. With your referral ask GP to add all the hospitals in your area, or outside if you choose, inc private that do NHS, to your records and give you booking reference. You can then choose anywhere that could speed things up. I’ve found the private hospitals quicker.
GP can give other pain meds, if you’re concerned about opiates there is Nefopam. GPs hate it as more expensive, but I didn’t care at the time. On the whole Oramorph has been a big help at times.
Poor body. Ughhhh , these things are interrelated and yes it’s a familiar experience. You’re not alone. Have a look at these two ladies to give you some hope on Instagram @heal-endo and @corerecoverypt for some understanding behind the pain etc. you may not choose their routes but it’s good to have an explore. Have a listen to Leah Brugh too a functional nutritionist another good resource. A UK website with resources for trustworthy info is Dr Louise Newsons Balance website for the Newson Clinic in Stratford. There’s podcasts etc on endo and treatments there. Hope this gives you some comfort and helps with the worry.
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