What symptoms of yours were confused for ... - Endometriosis UK

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What symptoms of yours were confused for IBS?

foursimplewords profile image
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I've heard this can be quite common. I am waiting for my lap next month but I've suffered with IBS for years and the past few years it has been awful. This is despite a good diet and probiotics etc. For me it's urgency to get to a bathroom, pains/gas when I wake up in the morning and a ridiculous bloat which makes me feel so fat and ugly. I am now in a position where I'm scared to be away from the house unless I am comfy using a bathroom where I am.

Did anyone else have some IBS which was actually their endo?

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I had always had a dodgy gut and would get frequent but seemingly random bouts of diarrhoea, especially at night, when no-one else in the house would be ill. By the time I was diagnosed I had chronic constipation and diet made no difference. I also passed mucus and sometimes had bleeding and would have terrible pain in my bowel with each period which would last for around 10 days. It was dismissed as IBS but I had extensive bowel endo and a large rectovaginal nodule.

foursimplewords profile image
foursimplewords in reply to

Sorry to hear you are suffering badly xx

weekari profile image
weekari

I was diagnosed with ibs age 11 (I'm 39 now). I've only just been diagnosed with severe endometriosis but I'm waiting on finding out more about it, like where it is etc so I don't know how much of my symptoms are caused by endo. I've had all the ibs symptoms over the years...urgency, bloating, mucus, constipation, diarrhoea, gas.. All of it. But about 13 years ago I did a gut healing diet and completely changed how I ate. It was a long process but it resolved my symptoms completely. Until, about 4 years ago when I started to get terrible bloating, like I would suddenly look 7 months pregnant and have the worst pain. I would call them stomach attacks as that's what it felt like, (sorry if this is tmi) it felt like a pole had been rammed up my bum, I'd never known pain like it. I would be pass out with the pain and be freezing and soaking with sweat. It would make me sick too. I also had other symptoms such as severe fatigue and painful skin rashes. But I didn't have any of the symptoms of ibs that I had previously - my bowl movements were still fairly good. I was tested for coeliac, crohns, IBD and a few other things I think but got the completely useless diagnosis of Ibs. I saw a nutritionist and did the fodmap diet but it didn't have any affect. I also did a gut healing diet again, no affect.

A new GP sent me for an ultrasound and large fibroids were found, along with elevated ca125 so I was referred to gynae. They were adamant I had ibs and it was not gynae related but they reluctantly offered a lap to rule out endo. The GP thought I had endo so suggested I try the pill while I waited for my lap. I did and the day I started the pill was the last day I had a stomach attack, 2 years ago. They didn't find endo so I stopped the pill after 3 months and my stomach issues didn't come back.

I then started getting hip and back pain and a recent mri has found severe endo so I don't know how long I've actually had it and how much it accounts for my problems. I strongly suspect I've had endo a very long time and the pill helped to stop am area that was growing at my bowel but that more recently its been flooding somewhere else that's affecting my back. I think I did have ibs but that I resolved it through diet and lifestyle changes 13 years ago and what I have experienced recently is hormone and endo related.

I think there's so much overlap with digestive and reproductive system symptoms that I don't know how Dr's can be so confident when they say something is ibs or is gynae related. I also suspect that the 2 systems impact each other... I know that the hormones released during our period that cause the uterus to react also cause the muscles in the gut to respond which can cause stomach cramps and a change in digestion, which is why a lot of people get an upset stomach during their period. That's without endo or anything wrong. I also think whatever CAUSES the endo (eg hormone imbalances) could ALSO cause digestive issues. So even if we get endo cut out, if the hormones are still out of whack, we could still have terrible stomach problems. It seems like the Dr's never look at the cause of endo though or monitor hormones.

foursimplewords profile image
foursimplewords in reply toweekari

sorry to hear about your struggle!

PandoraPenguin profile image
PandoraPenguin

Abdominal spasms causing pain and diarrhea

Waking in the night in real pain, sweating like food poisoning, like joreilly, when everyone else was OK.

Bloating, I can look 3 months pregnant and it comes on very quickly

Pain when I need to go, feeling like when I need to go I just need to get it out to stop the pain

Stabbing pains, like weekari said, like burning rods being inserted

When I had periods I found my bowel movements were linked to my cycle, diarrhea at ovulation and on first day of period

I am also quite sensitive to dairy and spicy foods. I take probiotics and macrogol to keep things softer for easier passing. I have had adhesions removed which were stuck to bowel and endo in the pouch of douglas both of which can cause these symptoms.

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