I’ve recently finally seen the consultant who advised that she doesn’t think I have endometriosis, but instead have IBS. This is due to when I have a “flare up” the pains come in bursts, and then go - I often describe as what I’d think a contraction to feel like. She has told me to follow a FODMAP diet and lower my carb intake, but my diet has always been the same. I’m really struggling with being able to cut things out to find “triggers” because they don’t happen often. The pains I have is usually for about a week on and off and happens every 2 months or so. I’m really not convinced that it’s IBS. Even the pains literally feel like someone is stabbing my insides along the c-section line- rather than my stomach.
Has anyone else had a wrong diagnosis of IBS and what did you do?
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Elbowpuppy
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I’ve had an ultrasound, which the radiologist told me that I have what they look for “the sticky substance” when doing USS for endometriosis. However the consultant said they were completely normal.
Yes I was told for many years I had IBS however it turned out to be endometriosis and adenomyosis. It was actually my gastroenterologist who is an amazing doctor that sent me for an MRI which diagnosed Adeno and I had a lap for endo. If you feel it isn’t right, push for more tests such as MRI/Laparoscopy,
I do have bowel problems but that’s down to adenomyosis , wish I had known all those years exactly what I had as it would have helped me a lot 💛
I have also had the FODMAP diet but found it quite hard to follow!
Thank you. I think I need to go back to the consultant! Yes, the FODMAP diet is so hard to follow ! Especially when I don’t get any pains for a couple of months and then I’m hit with excruciating pain! It’s hard to tell what has caused it !
hi Elbowpuppy sorry to hear you are having a hard time getting a diagnosis. Endometriosis usually needs to be diagnosed via laparoscopy because its very easily to miss on scans- - as mine was (sometimes adenomyosis can be seen on scan if the radiologist is skilled).
if the specialist is diagnosing only based on an ultrasound then perhaps you need to seek a second opinion with a different endo specialist or specialist centre which i believe they have in the uk.
i also has the ibs (mis)diagnosis for decades - there lots of new studies coming out suggesting that some women have a tight pelvic floor from endo lesions/scarring/pain and not ibs, and that was part of my situation too., so while fodmap can help reduce irritation and inflammation, it wasnt really the root cause of my situation. hormone imbalances also contributed to my situation - yours sounds cyclical too, but this can also be diagnosed treated by a good specialist.
i also had very painful cystic growths in my bladder that were also missed on ultrasound and mri scans but were seen on cystoscopy so my suggestion - based on my own experiences with scans vs laparoscopy etc - would be to keep seeking alternative opinions and investigations by experienced endo specialists who focus on this condition only or primarily (including gps, as a good womens health gp will refer you to a good gynae specialist).
its a very frustrating journey to diagnosis and treatment but best of luck, and there will be an explanation for your symptoms 🙏
I was told IBS for years, was put on medication for this as all my many ultrasounds came back clear. I was finally given an MRI which showed endometriosis. When I had a lap last week they said it was very extensive and now I have to wait a specialist surgery to remove it from my organs. I feel that if I was listened to years ago it would have been better managed and maybe not so bad!
The amount of times I was told it was IBS was a joke. I’d keep pushing for an MRI or even colonoscopy if they think it’s your bowel. Have they taken stool samples?
Yes diagnosed with IBS 30 years ago. I was certain it wasn't that. In September this year I had a failed hysterectomy when they discovered stage 4 endometriosis which has fused everything together. I'd had two ultra sounds which did not pick it up. In December I has an MRI which showed it sll in detail. Push for more investigations. Xxx
I was told I had IBS too and later when the endo reached my rectum, I was told that I had internal haemorrhoid! Do your symptoms get worse before and during your period? If yes, it’s endometriosis. I highly recommend you to do a MRI privately if you can as it’s the best way to get diagnosis. GPs are not specialists and they cause lots of trouble with their wrong diagnosis, don’t trust them when it comes to endrometriosis!
hello! I’ve been having issues for years after my C-section. My scar goes in at one side and that is where my pain comes from. The pain comes a couple of days before my period is due and lasts until after ovulation. Then the pain eases after that, so for 2 weeks every month the pain is at its highest .
The pain is a sharp, hot searing, conversation stopping pain. It wakes me up during the night, it makes me walk with a limp cause I feel I’m getting pulled down to the side. There is a lump I can feel and the skin is very sensitive to touch in that area. Like if I knock it off the worktop, it is excruciating. It affects my mood, my libido etc
I had a laparoscopic operation and the doc said there was no endometriosis. However she told me before I went down to op that she probably wouldn’t be able to see the section I’m saying is sore. Pointless in my mind. After the op she asked me if I had tried buscopan!! I was so angry I started to get upset. She then suggested lidocaine patches for possible nerve damage. I’m still waiting for those and my follow up appointment. The op was in May 2022!
I’m actually fed up with the whole process and feel utterly alone with it all.
Hi OPI was told IBS with no endo. I went back and pushed with a different gyno. Turns out I have IBD and (had) stage 4 endo on my bowel hence the flare ups on my bowel. Only 1 in 4 MRIs picked up all the nodes and scars on me. Took a lap and a colonoscopy to work out what was happening. Definitely push for more!
Hi there, I see you've had loads of comments answering your question already, so I thought I'd take a slightly different tack. A scientist studying endometriosis in Edinburgh University has concluded endometriosis changes the gut so it cannot properly digest carbohydrates. So cutting out carbohydrates will may be improve your symptoms which in turn annoyingly will re enforce a Dr's diagnosis of IBS.
I agree with all that glitters to push for answers until you are satisfied.
Personally I cut carbs out a really long time ago kind of through intuition. I avoided foods that made me feel ill. I'm doing it again just now. Oats and gluten free pasta are making me too sore to work so I've switched to potatoes and mince for lunch instead of pasta and switched to bacon and egg for breakfast instead of oats. Does that make sense?
However a word of warning! I always end up having my bloods tested twice (and so will you) when I get them done as my blood sugars are always below the normal low marker. I'm always accused of being diabetic. Then they start squishing my stomach around painfully. I think they are checking my pancreas. It always hurts but never where they expect! Then they look at each other funny and say 'well hopefully it resolves itself'.(there's always 2 people in the room for my physicals).
A paramedic who specialises in diabetes has explained to me my blood sugars are low because I have a protein and fat heavy diet. My blood sugars stay low. I need to remember and tell the nurse and Dr that when I get tests done. 😅
Whatever you decide to do, please stay on this page and let us all know you are OK. Just because a Dr says you don't have endo doesn't mean it's true. You know your body better than anyone.
hello. Yes I had this. Unfortunately I had to jump through hoops to rule things out. I did the low FODMAP diet for a month, tried gluten and lactose free separately and when I had proved that food didn’t make a difference, they did a camera into my stomach to check everything. Once all that was clear it was a case of okay it’s not gastro now and then I felt taken more seriously gynae wise.
It is quite common to be wrongly diagnosed with IBS as they can have similar symptoms. The FODMAP diet does not work well with endometriosis as there are things that are gut irritants included and it uses wheat and gluten grains which may be an issue as 80% of endo sufferers get some relief when they avoid gluten. You could try Dian’s book “Endometriosis: a key to healing and fertility through nutrition” or her web pages are endometriosis.co.uk/ she does personal consultations.
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