Hi everyone, I just wanted to see if I could get some advice from those of you with diagnosed endo.
I’m 23 and have been experiencing stomach issues for as long as I can remember now. I’ve always had mild pain on the lower left side of my stomach, I’m now prone to water infections that then travel up to my kidney so at first they thought this was what was causing my discomfort, I ended up in hospital about 4 years ago because the pain was getting worse and it wasn’t improving after being on multiple antibiotics treating me for a kidney infection. Long story short they did an ultrasound, bloods and endoscopy that all came back normal. I was booked in for a CT scan but it didn’t end up happening.
I then went private and was referred to a gastro specialist. He said he suspected coeliac disease and diary intolerance. After being on a coeliac and dairy free diet for 6 months and my symptoms not improving (symptoms of extreme bloating, nausea and stomach cramps/pain) he tested me for coeliac and shock, it came back negative. He then said he was going to redo the endoscopy and do a colonoscopy. Colonoscopy results showed my bowel was inflamed so they took biopsy’s. Endoscopy came back normal and so did bowel biopsy’s. Was then told I had severe IBS.
My symptoms became worse over time, I would get extreme diarrhoea, cramps, nausea and pain mostly on the lower left side of my stomach with cramps that would shoot deep between both my hips. This happened a few times after sex but not all the time. I ended up at the doctors a couple of times because the pain was so bad and the diarrhoea was so bad I would be unable to go to work. They said on multiple occasions, we think you have food poisoning or gastroenteritis, they took stool samples that then came back negative of both.
Again, symptoms are getting worse to the point where this time last year my pain started getting so severe that it takes my breath away, it almost comes in waves, I’m unable to move or do anything that will ease the pain, I get severe violent diarrhoea that is extremely painful, severe pain deep between my hips and deep in my lower left stomach and hip, this usually lasts between 1.5 - 3 hours. It then eases, I become completely exhausted and the left side of my stomach swells/bloats.
One doctor mentioned endometriosis to me a couple of years back but said he thought it was unlikely because my periods are fairly normal (I’m on the pill, I would say they are heavy and I get pains but I wouldn’t say they are severe) and at the time I completely dismissed endometriosis because I didn’t know enough about it.
Well I’ve been trying to monitor how often I get these episodes of severe pain and it’s usually every 4-6 weeks. During my period it can be extremely painful to go to the toilet and I get a lot of gas that again is very painful to pass. I spoke with a doctor about a week ago (it was an informal conversation) and he said 100% not IBS and he’s thinking possible endometriosis but he’s a gastro specialist and has suggested I go for an endoscopy and colonoscopy to rule anything out in those areas. I’ve been doing so much research but I just wanted to see if anyone has had similar symptoms or a similar experience? I would really appreciate any advice. Thank you in advance!
P.s. I’m so sorry this is so long..