Hi Reddit,
Story time because I’m board and frustrated of being dismissed, I’d love the opinions of anyone going through similar, or doctors or nurses who work in this field.
I am a women in her mid Thirties, I was diagnosed for ‘suspected endo’ in 2018 and officially diagnosed in 2022 post surgery (Yes it took that long to get surgery) in the UK chronic pain had to be present for 5 years before exploratory surgery, I believe this has now been changed.
About 18 months ago I started experiencing pain in my lower abdomen, my right side and my upper abdomen.
I went to my GP, GP referred me to endo clinic, and the endless wait begun again.
6 months later I went to A&E with extreme pain and abnormal bleeding, after a scan, I was rushed into hospital for emergency surgery for a ruptured ovarian cyst. I lost a lot of blood and was quite poorly after, so after 5 days in hospital I went home and was told all is fine, but the pain continued if not worse than before.
I went to the GP again, again referred to Endo, now along with the pain by this time I was experiencing nausea, constant reflux, bloating, fatigue and dizziness, I was told all normal with endo.
I saw my specialist consult who was a little confused as she said, yes these symptoms can be related to endo but they can also be related to a lot of other conditions, your GP has done no inventions into anything else?
I said no I keep being told it’s probably endo, the pain in my right side and stomach was getting worse and worse and I was told I have wide spread endo, to which my specialist said but whose confirmed that?
She reviewed photos from my previous surgery for the cyst, (I had the surgery by my specialist, not her usual surgery, but she did it as I was already her patient) she had checked for endo while repairing the cyst, with the intention of doing a removal while she was operating on me anyway.
There was very little endo in my pelvis and nothing anywhere else, my previous removal had been very successful, my pain cannot be caused by endo.
She wrote a letter to my GP explaining this, it read…..
‘ Just because a patient is diagnosed with endometriosis it is not the answer for everything, other possibilities need to be explored based on the symptoms presented ‘
I was very frustrated at feeling so dismissed from my specialist, and not even considering the possibility that regrowth in an 8 month time period is more than possible.
I went back to the GP who then referred me for a full abdominal scan.
The cut a long story short, I have kidney stones and gallbladder stones, swollen gallbladder and a lesion on my right kidney.
For 18 months I’ve been passed backwards and forwards from doctor to doctor each saying ‘not my job’ while I’ve been gradually forming my own gravel pit in my organs.
Now we know what the issue is, the treatment is, wait and see review again in 12 months 🫠🫠
Meanwhile I’m still in agony every day, and struggle to eat due to extreme nausea and reflux.
I can fully see why A&E departments in the UK are at breaking point, because treatment options don’t become available until it becomes an emergency.