Doctors unsure but think it's IBS

Hi,

My problems began mid January this year, strong smelling urine then diarrhoea with low pelvic cramps that I can only describe as really bad period pains.

The doctors have run bloods for inflammation, other tests for Ovarian cancer, liver and kidney functions etc and all have been negative. My stool samples also came back negative for any raised markers. I've also had a pelvic ultrasound to check my uterus and ovaries which was fine.

I had my annual kidney/renal bloods and a ultrasound scan in November as had back pains then. I have the bloods and urine checked every year as I have blood and protein in my urine (blood is not visible). These were also fine.

I've been on mebeverine for a month and a half now (buscopan gave me really bad side affects such as shortness of breath). I'm still getting the low pelvic (really low down, below belly button area more pubic area) cramping but it's dulled. I don't feel bloated, constipated or have any high abdominal pains. My stools have firmed up but are still soft and I've noticed black specks in them (not undigested food as far as I can tell), they're also pale in colour. I've also noticed streaks of red blood on the stools, this comes and goes.

I'm also experiencing lower back pains, across back and then sometimes more in one side. At the moment I've had a horrible pain in my lower right side (actually on the side of body round to the back) which is really tender to touch and feel like I can feel a lump there. I also get numbness in my arms, only one side at a time. I noticed my feet seem to have swollen a bit as well as my right forearm. This seems to come and go as well.

Along with the back pains I have a horrible cramping, burning sensation in my inner thighs and often am short of breath. I've also lost about 11lbs since mid January and I seem to still be loosing weight. I'm eating but don't have an appetite. There's nothing that seems to set me off, I eat and have no urgency to use the toilet. I use to only go once a day and now it's that or more (can be very loose or constipated).

The pains don't lessen or disappear after a bowel movement.

My doctor referred me to the gastro unit at hospital but they looked at referral and said I need to see a dietician (which I've been referred to and still waiting to hear). My doctor thinks they didn't want to see me due to my inflammation markers not being raised.

I'm tired and getting really down about it all. I'm worried about food, worried about the pains and worried something's really wrong with me.

I've started going to yoga to see if that helps, not sure so far but will keep at it.

Sorry for the long post, if anyone out there has anything similar to me please respond, it'll be comforting to know I'm not alone.

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7 Replies

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  • IBS does not sound like the right diagnosis, more like the doctors can't be bothered to look further.

    With all your symptoms you need to be referred, possibly to a gynaecologist or better still a urogynaecologist, have you been checked for a prolapse ? that can cause a multitude of symptoms.

  • Thank you for replying. One doctor I saw talked about referring to a gynaecologist but then as my ultrasound was normal (along with STI and cervical tests) it was never mentioned again. Prolapse was never mentioned to me.

  • Unfortunately some doctors are happy to dismiss symptoms when basic tests come back negative. With your symptoms and weight loss you should be referred. You must go back to your GP and demand some action.

  • I know :( I feel like there's nothing more they can do and have left me to it! I doubt they'll refer me to gastro again (unless I have major symptom changes) as gastro didn't want to see me. I will have to go back as it's really getting me down, weight loss is a worry as I'm 5'4" and 8.9 stone (so still within bmi but won't be if I keep loosing weight!)

  • Ask to be referred to a different hospital, it's appalling gastro have refused to see you. If you can afford a private appt then that's another option, choose an appropriate consultant and go for an initial appt, then you can revert back to nhs if needs be.

  • Ultrasound doesn't always pick things up you can have the camera which can show more what's going on up there or in more severe cases they operate to see if there is anything there like endometriosis or cysts etc also stomach acid can make stools loose and light in colour due to grease in food

  • Hi,

    I get the low abdomen pain and strong urine sometimes and get water infections with blood and which seems to kick off my ibs, but I'm never really sure which is causing the pain, the infection or the ibs? So have antibiotics and buscopan but pain can last weeks, been on Buscopan for three weeks and sending in another urine sample today to check for blood. Also waiting for pelvic scan!!

    I understand how it gets you down, makes you feel so poorly

    Hope you get sorted out soon

    Laine

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