Starting to panic, any advice please

[RedTeddy]

Hi all, I started with lower pelvic pain over a year ago (following a UTI) I had antibiotics for UTI but pain never went away. I had a transvaginal ultrasound which was all clear. I had noticed a few months before my constipation was a little worse and I had blood in my poo, only when passing hard stool and over straining, it was bright red. My Dr. just said she didn't know what to do next! I took it upon myself to see a private Gastro Consultant, he felt my stomach and no lumps or pain when pressing at that time so suggested a sigmoidoscopy. I had this and was told all clear just internal haemorrhoids, which I assumed explained the occasional bleeding. I then saw a Urologist and Gynaecologist, I had a joint laparoscopy and cystoscopy, both all clear. By this time I was also getting a lot of pain intermittently in my hips so saw an Orthopedic Consultant, I had a pelvic x-ray, all clear just wear and tear but nothing that could be causing me the pain I was in. He then sent me for a pelvic MRI, no red flags I was told just inflammation in the lower left side, this is where I was also experiencing pain. My GP was aware of the inflammation but nobody suggested any further investigation?! Anyway in my quest for anwers and after seeing many different consultants I decided to see a pelvic floor physiotherapist. During my second visit I had had a few days of awful pain, she felt around my stomach and said my tender areas were where my large bowel is and decending colon, we both agreed I should go and see a Gastro Consultant again. I have an appointment with a different one to the one I saw last year, I'm going next week and I'm starting to panic thinking I have bowel cancer.... I have been really struggling to empty my bowels fully even when I feel I really need to go and because of the pain I can hardly strain anymore. I haven't seen any blood recently as it still only happens when I'm trying to pass a hard stool. I feel a bit bloated and it hurts to sit upright or bend over, I cannot lay on my side in bed, especially my left sid as it's painful. I've not lost any weight or been sick or anything. Sometimes I feel tired but feel it's the pain dragging me back, if I was pain free I'm sure I'd feel like doing more. I feel so alone and I'm trying not to use Dr. Google. I feel angry with myself for not going back to a Gastro Consultant sooner but as I'd had the Sigmoidoscopy I felt safe it wasn't my bowels, not I don't know what to think. Has anyone had similar symptoms, could it be Divericulitis? Sorry for the long post xx

[MOLLYMILO007]

Hi heck I feel u have covered all basis...I had horrific left side pelvic pain thought it was gynie as so low down paid for a ultrasound..all clear then had blood in poo had a fit test found blood so had colonoscopy...all cleat nothing in my colon...found a small cyst on my pancreas which I'm going for a 12 month ct on sat..to check still the same..however I asked my gp what could the pain have been for 8 weeks ?? She said sometimes we get paid and no answers to it...funnily enough I changed my diet eat more fruit veg drink water abs take a lacido a day to help me go toilet as I had constipation for years really bad so now I go nearly daily...and the pain just disappeared as quick as it came..I've got health anxiety as each thing I get I think its something bad..and like you I pay to get answers..so pls change your diet if its that and get some stool softners and see how u go...I'm sure with all the tests you have had if anything wrong it would have been spotted ...Good luck ..jeanette x

[RedTeddy in reply to MOLLYMILO007]

Thanks for your reply Jeanette. I think I do have a reasonable diet, I eat fruit every day & have done for year's, I also take stool softeners when needed to help with constipation. I haven't been too good with exercise the last couple of year's & especially since the pain started over a year ago. My stress levels have been very high this last year too which doesn't help anything but it's hard to control when I still don't have answers. It's been going on so long & I've tried to tell myself something would have shown by now but if it's higher up my bowel then the sigmoidoscopy would have missed it & I'm worried I've been looking in the wrong place the last few months. I'm just trying to stay calm until my appointment next week then I'm hoping for a colonoscopy so I will find out once & for all if it's my bowels. I'm glad you got some answers & are doing better at least you know what you're dealing with which must be a relief xx

[MOLLYMILO007 in reply to RedTeddy]

Hi I had a ct colonoscopy with contrast...u may be better asking for that instead as it shows up alot of your insides that how they found my cyst on my pancreas as they wouldn't have seen it also the ct isn't as unpleasant ...x

[RedTeddy in reply to MOLLYMILO007]

I agree the CT would be better but I'm allergic to the contrast dye as I found out a few years ago when they came running in with the crash cart... I think there are alternatives so I will ask when I see him next week. Tbh I'm at the point where I'll go through anything just to find out what's going on xx

[Lucyluii]

Hi Red Teddy- Your symptoms sound identical to mine- and I too am going through mental hell. My main pain is in my left hip- although it can travel to almost anywhere in my back. Some days it is better than others- but I suffer with health anxiety which makes it worse. Soonest consultant can see me is 10th June.. hoping for a cancellation- I feel you pain - praying we are ok

[RedTeddy in reply to Lucyluii]

Hi Lucyluii, sorry you're going through something similar, it really does get you down doesn't it.

Well I had my appointment with the new gastro consultant last week & it felt like a complete waste of time & money. When I told him about the investigations I'd already had done he just treated me like I was some sort of hypochondriac! He said people are watching too much TV & googling their symptoms, he was extremely patronising. Most of the things I have had done were not looking at my bowels but my bladder & gyny issues. The sigmoidoscopy was the only bowel related thing I had done. I wanted a colonoscopy so the whole of my bowel could be checked, he refused & said the sigmoidoscopy would have detected anything. I know this is not true from reading other people's stories. If a sigmoidoscopy clears everything then why bother with a colonoscopy?! He told me to take laxatives daily (even though I do already go daily) he said they probably wouldn't help with the pain & I should try & live with it! He referred me back to my GP suggesting they organise a FIT test & mentioned he thought it was 'just IBS'. Those were the words I was dreading as I don't think health professionals take anything seriously once 'IBS' has been uttered.

I haven't heard from my GP yet, no surprise there so I will no doubt have to chase them up. I'm still in pain everyday & some days it's a struggle to function at all.

I hope you get a good consultant who listens to you & is willing to carry out some tests & you get some answers, it's all we really want then we can deal with whatever it is & get our lives back. Good luck let us know how you get on & I will update if I hear anything xx

[Lucyluii]

Hi Red Teddy - so you have private medical insurance or Medicash? If so just ask for a referral letter off your GP- you will be surprised how willing they are to give you whatever tests you need when you are paying. It is horrendous that you have been treated this way xx

[RedTeddy in reply to Lucyluii]

I have paid for most of my tests privately, I used to have private medical insurance year's ago but no longer. So far I have spent about 6k.

My recent visit to the gastro consultant was a private appointment, he refused to send me for a colonoscopy even though I was willing to pay for it. I'm going to call my GP surgery this morning to arrange a FIT test but if it's negative they won't send me for a colonoscopy either.... I don't know what to do anymore. Stomach pain for this long is not normal, I feel nobody is listening I'm so depressed I honestly can't go on much longer like this x

[Lucyluii]

Have you looked at a virtual colonoscopy- there are some companies offering this and you can pay ( around £850)- think you just need a GP letter. If you sign up with Medicash you can claim towards costs and also see a virtual GP for a referral letter xx

[RedTeddy in reply to Lucyluii]

I've just contacted my GP surgery this morning & practically begged for a colonoscopy, I'm not holding out much hope. How does a virtual colonoscopy work 🤔

[Lucyluii]

pallmallmedical.co.uk/tests...

Have a look here- sounds wonderful. I have had an awful night- I have pain all down my left side and terrible diarrhoea this morning- going out of my mind - so really feel your pain - I too have been called a hypochondriac on many occasions xx

[RedTeddy in reply to Lucyluii]

Thanks I'll take a look 😊 I wasn't too bad in the night then I was aware of the pain in the early hours. I just keep thinking will this ever end & will I ever get a diagnosis 🤔

[RedTeddy in reply to Lucyluii]

Well I contacted my GP surgery this morning and..... Wait for it....... I'll get a call back in 3 weeks time, yep no joke! 😤

[Lucyluii]

Hi lovely-Just seeing if you got sorted - I had my tests and thank the Lord all was ok- I couldn’t believe it- hopefully this will give you hope that you are too xx