IBS without bowel symptoms?!: Hello 😊 I will... - IBS Network

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IBS without bowel symptoms?!

Jae95
Jae95

Hello 😊

I will try to keep it short but basically can you have IBS without bowel issues?

I was thought to have endometriosis, I will list my symptoms down below if you want to read them. I had a laproscopy 4 weeks ago and all that was found was a distended large intestine so I've been told I have IBS.

I do not suffer with diarrhoea or constipation, literally ever. I can't remember the last time I had a problem.

Prior to my laproscopy I was trialed on mebervine and buscopan, neither of them helped. I've had two abdo ultrasounds which were normal.

I have just had my calprotectin results back and they were normal as I expected.

The only pain relief that helps me is mefanamic acid.

23 y/o female, good health otherwise. Lower abdominal pain, always a cramping feeling but get shooting pains alongside it which go down my thigh. Plenty of gynae symptoms alongside all this (periods and painful sex etc). Constantly tired, have periods of feeling sick so have to take antisickness tablets to help shift it when needed. On destrogel birth control, Amitriptyline for a back issue (they hoped the dose to 50mg to see if it helps my abdo pain, it doesn't, and mebervine. Currently signed off work due to pain levels but will have to return shortly as nothings changing.

Dr won't let me take cocodamol now they're suspecting bowel issues.

I'd be really grateful for any advice any of you have. In my head I don't understand how I can have IBS without bowel issues.

Thank you 😊

14 Replies
oldestnewest

Mefanamic acid was my saviour when I had very heavy bleeding and pain which was Endometriosis which a Lap confirmed. Could feel it working after 20 mins.

Jae95
Jae95 in reply to Linley

It's been amazing, the only thing that helps me as well! I've been given it to take all the time but I worry about using it all the time so give myself breaks.

Endo was ruled out in my lap and I had a specialist do it so I trust his judgement but I do worry maybe it's adeno instead. I just wanted to find out if people have IBS with normal bowels or not so I can make a point at my next appointment about it. I don't understand how you can have IBS without bowel issues but thought I'd ask 😅

Linley
Linley in reply to Jae95

I always maintain that us women all our bits are in the same area so everything should be tested and eliminated. Good Luck

Jae95
Jae95 in reply to Linley

Definitely I agree! Thank you!

I agree with you and maybe your issues are gynaecological rather than bowel related? Try CBD oil for your pain

Jae95
Jae95 in reply to Suecoo66

That's what I really do think, just trying to get them to see it that way rather than telling me it's IBS and closing the door on me 😫 I'll have a look into it thank you, I wasn't really sure how to get hold of it and if there's another way of using it because I don't smoke or vape

Suecoo66
Suecoo66 in reply to Jae95

If you are in UK just buy online, I get it from Healthspan or there is CBD Guru and CBD Brothers

Jae95
Jae95 in reply to Suecoo66

Thank you 😊

My son doesn’t consider himself to have bowel issues but his consultant said that as he may not have a motion for 2 or 3 days this is classed as constipation. He has slow gut transit/motility possibly caused by IBS. With flare ups he has extreme nausea & cramp & unable to eat. Has lost 2 stone even though back to eating properly again for several months. However I myself had gynae issues that they could not see through ultrasound & were unable to investigate with an internal camera due to blockage but due to my symptoms (very heavy bleeding every 3 weeks, pain, cramps) gave me a full hysterectomy & they found adenomyosis, multiple fibroids in womb & ovaries & one blocking my cervix. It just all had to come out. I have never looked back but I am in my 40’s & have had my children. Good luck but be persistent, get second opinion etc. You know your own body & the medical profession are quick to fob you off & don’t like dealing with difficult cases in my opinion!

Jae95
Jae95 in reply to Monkeypuzzler

Bless him that's horrid! I'm really regular so that's the thing I don't get.

I really do worry it is adeno that maybe I have caught early and that's why it wasn't enlarged in my laproscopy. I know the only treatment is to take it away so I won't be gaining much by getting diagnosed but it just means I could start a family etc earlier than I'm planning because at the moment it's definitely not even in my 5 year plan so if it's something that needs to be done sooner than later we better get a move on 🤣

Monkeypuzzler
Monkeypuzzler in reply to Jae95

Trust your instincts & get a second opinion and maybe yes don’t leave it too long to try for a family! You just never know!

Jae95
Jae95 in reply to Monkeypuzzler

Thank you 😊 just tricky when there's things you want to do first but if it's to be that way then thats the way it shall be ☺️

Hi Jae95, I don't think it is possible to have IBS without bowel symptoms. If you type in IBS Rome Criteria you can see the official definition of IBS and that it must include bowel changes. However, when I raised this with my hospital GI consultant (I too don't have any bowel changes but have other digestive problems) he said that IBS is simply the better known of the functional gut disorders and there may be 5, 10 or more different functional gut disorders i.e. problems with the digestive tract that can't be seen on scans and can't currently be detected and so that is what I was diagnosed with.

Since the treatment options are very few if you don't have bowel issues I decided to get a second opinion privately through a nutritionist and she recommended a test to detect SIBO alongside advice about Low FODMAP diet. Turns out that I was positive for this so worth googling symptoms to see if you might have SIBO. It's a long shot and I think gynae problems are perhaps more likely. Do your symptoms flare when you get periods? I have endo and found that going on the mini pill continuously has been wonderful as when my periods stopped the pain largely went (about 90% pain free now). Not sure if this will help you since you don't have endo.

Also could your back pain be causing some of the pain e.g referred pain, as some muscles like the psoas (?) I think can connect and cause weird hip, back, leg and abdominal pain?

My other thought is something like a gallbladder or AC valve issue. You can test the former but not sure about the latter. Maybe worth checking with your GP as to what organs/muscles/tendons underlie the area where you get most pain to see if that could be causing some of the problem. Or what about hernia, adreanal problems or some other hormone issue? Unfortunately a lot of this is about exclusion to reach a diagnosis.

Anyway, hope this helps...

Jae95
Jae95 in reply to Liz1234ty

Thank you that's really helpful 😊 it just doesn't make sense to me how it could be haha! I literally have no problems with digestion or anything, no food or drink triggers it, it's just always there. Even when I was fasting for my op the pain was still the same.

I did think about my back and if it could be linked. I had so many tests for my back and nothing ever came up from it apart from having a small scoliosis but I'd think if it was referred nerve pain it would subside with the amitriptyline I take for it, especially now they've upped my dose 🤔

I really do think it's a gynae issue, I had literally every symptom of endo including my cervix being tight and pulled up so they assumed there were adhesions pulling it up.

I'm definitely worse when on my period. For the last three years I've been on the combined pill and taking a break every 3 packets, even then I would fill a 25ml cup in 2 hours (sorry probably too much information 🤣). When the daily pain started my GP switched me to destrogel so progesterone only as that's what the nice guidelines recommend after combined. I had a period the first month, it was super light but it's the most pain I've ever been in! Since then I've not had one (3 months) but get more pain when I'd be due and like two weeks after so I'm assuming ovulation.

I just feel like they're getting blindsided by the large intestine being distended. I know it's something not to ignore but I think it's a coincidenctal finding. Fasting and not being able to drink for 12 hours made me feel really poorly by the time I went to theatre. So much so that they couldn't control my temp and heart rate when under as it was so high from waiting till 7.30pm for my op 😖 and I'd thought they would have seen the intestine issue on my ultrasounds before as well!

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