Is this really IBS? And how do i manage it?

[MrsB1986]

Hi all, i have been diagnosed with IBS after no endometriosis was shown during my Lap at the end of November. I wanted to know if people are in pain with this all day every day like i am? I have constant pain in my lower left side like period pain/cramping and a constant pressure feeling in my bottom and it never goes away, not even after bowel movements. I went for 6 days last week with no BM and then on the 7th day had 13 different visits to the toilet with varying stools, i get pain in my back, going into my groin and down my leg, nausea, fatigue and blood from my bottom but usually only when I'm on my period. I feel so down as people think Oh its only IBS it cant be that bad but i struggle daily and food doesn't seem to be a factor as i can feel like this as soon as i wake up and i havent eaten anything for 12hours or so. I have a healthy diet more or less ( odd chocolate etc here and there) i try my 3 litres of water a day and at least my 10,000 steps a day. Any advice please i would be grateful.

[Liz1234ty]

Hi there, sorry to hear this. Pain (visceral hypersensitivity) is associated with IBS but your case sounds at the extreme end. Before a diagnosis of IBS can be made other similar conditions need to be excluded. Are you under the care of an NHS or private gastroenterologist? They should have ruled out things like parasites, gluten intolerance, IBD, bowel cancer, a abnormality in the bowel, etc through blood tests and colonoscopy. If you have not seen a suitable specialist you should ask your GP for a referral. Please DON'T WORRY about this list - it is a normal part of excluding rarer but treatable illnesses before arriving at an IBS diagnosis and most of us on this forum have been through these tests. It's routine.

There are a few treatments for pain - over the counter stuff includes peppermint pills/teas (I found this really helpful for my cramps but they weren't as severe as yours). There are also low-dose antidepressants that GPs can prescribe that could help with pain. Fibre supplements can help with constipation (over the counter).

Also you mention back pain. Have you seen a physio or chiropractor to check for any spinal issues that could be causing your problems? i.e. it's not IBS.

You could also keep a food diary for 2-4 weeks to see if there is any link between diet and symptoms. It may be something that you ate 24 hours ago that is causing the problem rather than something a few hours ago and patterns can be more easily seen with a diary rather than using memory alone.

I hope some of this helps.

[MrsB1986 in reply to Liz1234ty]

Thank you for your reply. All i have had done so far are some blood tests to check for gluten intolerance and a stool sample to check for calprotectin which has comeback clear. He said if this was to happen i wouldn't be referred t a gastro specialist as essentially they would agree that its IBS. I haven't seen anyone about my back but i will be making an appt shortly. I log my food daily but i find it hard to tell if anything is the cause as the pain seems to be constant and i dont go go toilet for minimum of 3 days regardless of what i eat/drink. Thank you for your suggestions and help though x

[Maureen1958]

Hi, Sorry you are having such a bad time. I have pain most of the time with my IBS now. I have had it for over 35 years, everyday since my son was born 29 years ago! It has got much worse since COVID started. I think I might have had Covid without any symptoms back when it all started, I am not someone that has lots of colds or flu. The only thing I seem to have constantly is the IBS. I get most of what you describe, but I am more on the diarrhoea side of things, although not so runny as it used to be! Are you sure that the blood you are experiencing is from the bowel, as you say it is usually when you are on your period! I can remember sometimes I used to have blood and wonder is it was from my bowel when I was having a period. I get the groin pain and pains down my legs. Although I now think I have fibromyalgia and TMJD (but no diagnosis). I am thinking you could try to treat the constipation as then it might be less painful. I have alway just kept going to the loo, but now I am trying not to do that as it doesn't seem to work anymore. But by doing this I seem to have soft stuff and hard stuff inside me at the same time, which somehow seems to make it worse. Perhaps something similar might be happening with you!

[TCJL1]

It sounds like diverticulitis. Especially as it’s on the left hand side… a colonoscopy would show it

[Gothchic]

Hiya, you do seem to have symptoms of endometriosis especially since they are worse during your period, i wondered if your laparoscopy was done by a general gynaecologist or a consultant that specialises in endometriosis as the disease can often be missed and a general gynaecologist may not be able to spot deep deposits. Quite often endometriosis causes ibs type symptoms. I was sent to a gynaecologist after deep endometriosis was spotted on an MRI I had but I was fobbed off and told it wasn’t endometriosis and she tried to send me to a gastro doctor but I insisted on a second opinion because I know my body and felt she was wrong. I finally got a laparoscopy from a gynaecologist with a good knowledge of endometriosis and find deep nodules on my utero sacral ligaments. I just wanted to share my story with you because if you feel your pain is gyne related maybe look into asking for a second opinion/tests because it’s so easily missed.

I wish you all the best and hope you find relief from your pain. Xx