Any amateur doctors want to try diagnosing me? The real ones have given up.

[VivaLeBeaver]

I've been suffering with abdo pain for the last two years. Constant low grade ache, not affected by cycle. I did have heavy periods though so presumed it was related and went to the gp two years ago. They did a urine dipstick while I was there and it was positive for leucocytes so they said I had a uti and give me antibiotics. Also referred me to gynae.

Lab wee test came back negative for a urine test. Gynaes ended up a few months later doing an endometrial ablation. That didn't make any difference but at least I don't have heavy periods.

Pain still the same, I go several times to gp. Each time get antibiotics which do seem to help, I always have leucocytes in my wee. I wonder about interstitial cystitis and get sent to see the urologists. They do some sort of internal bladder scan tell me it's all normal.

By now I'm on antibiotics every day. In fact I've now been on antibiotics constantly for two years. I have trimethropin on rpt prescription and take it nightly.

I went back to the gp a cople of months ago who shrugged, sent off another urine test to the lab. This one didn't actually have leucocytes in it and the lab test came back clear. I seemed to correlate this flare up and previous ones with forgetting my antibiotics for a cople of days.

I'm in a lot of pain the last few days. Even though I've been taking my antibiotics. Symptoms are terrible abdo pain with the focus been central , massive bloating, bad wind, stabbing pain up the arse. I had a sandwich at lunch and the stronger abdo pain seemed to come on after I'd eaten.

My thoughts on possibilities are now,

Celiac disease
Ibs
Ovarian cancer

It's ot endometriosis, the gynae dr was very clear i didn't have any. I keep telling myself if it was cancer they'd have noticed when they did the ablation.

Is it worth going back to the gp and asking for a test for celiac disease or are the tests you can buy online any good? I think gp thinks I'm imagining it all so am loathe to bother him again.

Just been doing a bit of reading and have read that one of the risks of celiacs is developing a rare form of t-cell lymphoma.

My dad has just been diagnosed with this rare form of lymphoma and for years he's suffered from constipation and about 10 years ago he lost a lot of weight suddenly. Never went to see the dr but has been very skinny since then.

So now I'm wondering if he's got celiac disease as well!

My dad was undiagnosed until his sixties. My childhood memories of him always include him holding or eating a packet of Rennies. I think he kept them in business for years.

I would suggest he gets tested.

This is a total long shot but... I spent 2 months recently with abdominal pain similar to your description. I tried cutting out wheat too (which incidentally did seen to help a bit) but in the end I found the solution. We're on a private water supply as we live on the moors. It's been raining all summer. I'm the only member of our household who drinks copious quantities of tap water. The day after I stopped drinking our tap water I started to feel better and have now had a pain free 3 weeks. I'd be surprised if this is the answer for you too but if it helps one person somewhere that'd be great!

As an unhelpful but interesting aside, the pain up the bum has a name - Proctalgia Fugax. I suffered for years not realising other people got it too! However I never knew what caused it, and it's essentially stopped now, so no help for you Viva, except that most articles seem to link it to IBS.

I second heamadots, getting your bowel to move on a more frequent basis, can only help!

Not sure if its already been mentioned, but the "diet coke habit" you mention is also a likely cause, the sweeteners they put in those things are plain nasty & cause no end of gastric upset - especially in those with IBS that sre sensitive to them - my DD will be doubled up for days if she so much as sniffs the stuff, I get the same sort of pain you describe if I accidentally eat/drink any & can literally "feel" it within about 10mins - lots do.

The other thing that might be worth a thought with all the UTI stuff - have you had a kidney/urinary tract scan ??? - if not you need one - I can relate to a lot of what you list symptom wise & due to it being fobbed off by my GP as intistitial cystitis linked to my diagnosis of Fibromyalgia & M.E. - its taken 3 years for them to finally take bloody notice & realise its more likely sodding kidney stones, they are pretty certain it is & I have a scan on thursday.

Also I agree with the diet stuff for IBS, really important, if your gut is healthy you could well be fine with wheat, if not, then all the harder to digest foods - wheat, meat, dairy - will likely cause problems.
both DD & I have an IBS diagnosis - hers can flare up at times & I find giving her the spice turmeric in rice, or a soup drink etc(herbal medicine for gut inflammation etc) will bring it back under control - also during this time I keep her diet free of hard to digest foods & too much roughage - just until it settles down again.

She WAS Lactose intolerant & severely sensitive to chemical food additives - that was until I realised the link between her stomach issues & the brown preventative Asthma inhaler they had her on - turns out the steroids thin the stomach lining & also the propellant is used in larger doses as a laxative - saw so many doctors, 2 paediatric gastro specialists & dieticians NONE of them picked up on the link, took my puzzling over why she was so well on holiday in a dry climate when she didn't need the inhaler & the food should have been awful for her & a chat with our chemist to solve the mystery - so if you take asthma inhalers, that could be you problem?? - DD is now off the brown inhaler & is no longer lactose intolerant & her chemical sensitivities have improved massively :)

As an adult with IBS I've found the herb Cats Claw to be fantastic for me & I don't really suffer any more:) - If I need antiBs I always take it for a few weeks afterwards & I took it solidly for about 6 months, which sorted me out & I now take it as needed

HTH

Have you tired an exclusion diet?
Google it or look in amazon.
I think your issue may be diet related.

Oh and if you have been on n ABs for 2 years you need a really good pro biotic!!

I had similar for years and only when i moved abroad did i discover I had an 8cm cyst on R ovary and 6cm on L. Furthermore, I also discovered that I had fairly major PCOS. I am so interested in the Trimethoprim aspect. I took one at night from the age of 16 to 33 and a couple extra after sex. It was the only thing that helped. Since I have had the cysts removed and taken Yasmin the symptoms have completely gone after almost constant cystitis, back pain and IBS for most of my sexually active adult life.

Rationally it doesn't really make sense and I thought it was just me that used trimethoprim for a pain of unknown origin.

I would pay and have a full abdominal ultrasound including trans vaginal for the ovaries. I have a very retroverted uterus which meant less experienced scanners missed some of my symptoms.

From a medics point of view I think its gynae not food intolerance. obviously bloating will make you feel more uncomfortable but is it really likely to be the cause? I have only found out about my health since moving away from the non interventionist (cheapo rationed) medical model so loved in the UK. A scan may be expensive but it is much more useful than cutting out blue spotted lentils for 4 weeks.

I have had an abdominal scan, not transvaginal, they looked at my bladder and kidneys. Not sure about ovaries but these were definetly looked at in my laparoscopy.

I've also had a camera put into the bladder and that was OK.

So no cysts, kidney stones, blockages, nasties that they could see.

I'm going to cut back a lot/stop drinking diet coke. Take vitamins and probiotics. Try and eat more natural food rather than processed stuff. Will keep eating some wheat for now until the celiac blood test kit turns up. Obviously if thats positive then I need to cut out gluten and go to the Dr. Even if not positive I think cutting out white bread would be beneficial even if I still have weetabix for breakfast. Give that a try and see if it works, if not then I'll go and see the GP.

Thanks everyone. Will let you know how it goes.

CATS CLAW INFO

I swear by the stuff :)

Even if not positive for coeliac, I think many of us would benefit from cutting down on wheat. Have you tried oatibix instead of weetabix? Would still be no good for coeliacs but an improvement even if you're not maybe.

Mine & DD Coeliac tests are always negative, but we definitely can't tolerate a lot of wheat & none at when things flare up X

Can I just say that coeliacs is not being gluten intolerant it is an auto immune disease caused by gluten intolerance so it is entirely possible to be intolerant to gluten and not have coeliacs disease.