Still in pain. Still none the wiser. Starting to feel a bit hopeless.

[Ohb0llocks]

Have made a previous thread on this. Timeline as follows.

21 June - v bad stomach cramps and trots
22nd June - gp says IBS
23 June - ooh appointment, very bad cramps and flank pain. Sent home, told to book scan
24 June - a&e visit. Given IV fluids. Bloods clear apart from one slightly raised liver enzyme which has been raised for almost a year with no symptoms. Sent home.
25 June - visit gp, request abdo and pelvic scan
28 June - visit gp sobbing in agony, mum had to take me. Dip urine shows protein, gp thinks possible infection. Abx prescribed. Pain goes.

10 July pain returns - visit gp, urine clear. Sent home. Urine sent for culture.
12 July - culture clear
14 July - ooh appointment, agony again. Gp sends to surgical triage. They have no idea. Test urine. Clear. Send home with advice to come back if pain worsens.
15 th July - visit ST pain worsens. Spend entire time sobbing on my mother. Sent home with 3 day trimethoprim. Pain goes after a few days
20 July - visit gp. Chest infection. Abx given.

23 July - scan. Only pelvic is done, all clear. Gp hadn’t booked abdo so referred back to GP.
1 August - pain returns. Visit gp. Nothing we can do until scan
7 August - go again. Nothing we can do.
12 August - ooh. Test urine - clear. Not sure if problem. Wait until scan.

I am in pain constantly. It’s sometimes right flank, sometimes upper right abdo, sometimes lower. Sometimes lower abdo cramps feeling (but constant) and hurts when walking. Sometimes pain is in left side. Sometimes lower back.

Last night took 2x paracetamol 2 x buscopan and 1x naproxen nothing touched it. Only thing that slightly helps is hot water bottles.

I’m breastfeeding 9mo DS2 baby and don’t want to give that up. We’ve worked so hard to get here I don’t want to throw it away. DS1 is 4 and for the past 2 months we’ve barely left the house, he just sits cuddling me and trying to make me feel better. My heart breaks for him. Keeps telling me that it’s not my fault and I’ll get better soon. He’s he sweetest and he shouldn’t have to go through this. None of us should.

I can’t ever see this getting better nobody seems to be willing to do anything. I have an abdo scan booked for tomorrow but that’s another day in pain that i just cannot do anymore I’m exhausted mentally and physically. I feel so bloody hopeless and I just want my life back.

Sorry you are going through all of this.

If I have read that all correctly; then tomorrow is the first time you will be scanned? Hard though it sounds, and however bad you feel, it is really important that you get to that appointment, as only then will the docs be able to see what is wrong with you; or at least perhaps get further clues.

I'm not an hcp but you could have gallstones or inflamation of the gallbladder itself which usually presents as pain in upper right quadrant. Or something with the appendix? A scan might help to determine what is going wrong.

Good luck op and hang in there. Can you get your mum to go with you to the appt tomorrow?

That sounds really really hard. Sorry if it’s been asked before but could you see a different GP? Even a different practice?

It sounds like you need to be under a consultant but it’s hard to know which one - do you have any thoughts on that? I’m asking because I have several suggestions to get you booked in with one but it’s good to try and direct actions to the correct type of consultant.

I have been suffering from chronic pelvic nerve pain for over a year and I am still undiagnosed so I sympathise massively. I have an 18mo and it is just crap at times, like you I feel terrible on those days where we just sit in the house.

Some suggestions which have helped me:
Headspace pain management meditations. I was v sceptical but even though I don’t think they particularly help with my pain they do induce a very deep relaxation which is helpful when you’re all tensed up and frozen with pain.

This ones an absolute bastard but if you can possibly consider giving up BF your pain control options will be hugely increased. I went back and forth a lot of times to the GP until I stood in front of one crying and said these magic words, “my pain is not under control, it never has been and I honestly believe it’s negligent to leave me like this”. Ask for the practice manager. Be polite but make a bloody fuss if you’re not getting anywhere.

Let me know if you have ideas about which consultant you want to see.

You can take Diclofenic when BF. I found it better for pain than Naproxen. I have Arthritis though.

Hope you get some answers soon but in the mean time try and get some slow release (75mg) Diclofenic and you'll need to Omezperole as well.

Oh sorry. Ignore me. Just read you have already had pelvic scan.

Hope more thorough scan reveals some clues though_

I don't know what to do or who to turn with.

I have had a scan but pelvic only, and all was clear.

Tomorrow is to check kidneys, gallbladder etc.

I've thought about stopping bf but he won't take a bottle or formula so not sure what to do. It seems like a long term thing for something that could be short term.

What I have noticed (could be a coincidence) is that pain usually goes with abx. Yet no infection can be found.

I have seen different gps and drs in the surgery, in a&e and in surgical triage. Everyone seems to have a different answer.

Just another thought = can you take suppositories = have no idea if they affect breast feeding or not but might be worth checking

Good luck

Intussusception? I believe in adults it can be intermittent, coming and going?

I'm very impressed by how many times you have managed to see the GP. Ours is impossible to see.

I have a GP appointment at 11. All I can do is keep going to the doctors and hoping that at some point they will help me.

Gallbladder has been mentioned. But does the pain go on this long? Does it move around like that.

Not sure if it's relevant but I'm 26. Stay st home mum. Although I don't feel like much of a mum at the minute.

I'm absolutely petrified. This is horrible. I had a traumatic birth and pre eclampsia and a hemmorage with DS2 and I would go through it again if it meant that this pain would go. This is not as painful but scarier!

@oldbirdy you can generally get a same day appointment if you ring dead on 8am.

I rang at 8:01 this morning and had to try 54 times to get through but managed it eventually.

The problem with GPS and A&E docs is that they aren’t usually experts in one particular field like a consultant will be. They are fantastic at sorting out normal, usual, run of the mill thibns but when it gets a bit weird and wonderful they can start to struggle. Could you get referred to Gastro as a first port of call? They may not be able to help but they might be able to give you some information and a point in the right direction.

I’m on my 9th consultant! I have got here by treating each appointment as an opportunity for information. I always take my mum, so we can discuss things and so there are two sets of ears listening. I feel like I’ve got a little piece of the puzzle at each appointment, listen for any tiny tidbits of info and see if you can use them to find the next step. It’s so hard, I’m sorry you’re suffering so horribly.

You have a similar recent history to mine (I was eventually diagnosed with endometriosis - diagnosis was made through investigative surgery)

Honestly badger I don't think I can cope with this pain long enough to go through different consultants!

@wobblebot but periods are normal?

I know, it really is hard. I think really the priority is to get your pain under control and then you can explore your options.

Sounds like gall bladder/biliary system. I speak as one who knows from bitter experience. Ask for this to be investigated. You do not have to have stones to have pain. Chronic infection or duct spasm can cause all this.

Also you can have IBS further up the system, not always in the lower gut. It can be a generalised gut malfunction.

I'm honestly heartbroken. My partner has gone to work away today and he's getting the train back because he doesn't want to leave me like this.

I just want an answer. Then I can at least stop panicking what it could be and start feeling like there will be a resolution because at the minute I don't feel like there ever will be.

I think you're going the right thing by keeping on going back. Print out that timeline to show him/her.

When they did blood tests what did they test for? Do you have a print out?

Sounds really rough.

I was in an almost identical situation last year, back and forth to GP on a pretty much weekly basis for painkillers etc. I was eventually diagnosed with PCOS after about 7 months, and then I realised I had lots of symptom that I hadn't put together. I had almost regular periods and 3 children, so quite a shock.

Have they done any tests for Crohns or Colitus? Family member had similar symptoms and is now diagnosed with crohns. The pain can be horrendous.

Have they looked at your appendix op? It can cause referred pain that can be felt anywhere over the abdomen- also would fit with things temporarily settling with antibiotics and then flaring back up again. Ask your GP specifically about this and personally I would ask your GP if they would consider referring you for a CT of your abdomen.

The CT could be weeks away though. Is it not dangerous to leave appendix that long?

I thought they'd ruled it out as normal examination reveals absolutely nothing.

Not sure what blood tests were for but full blood count and kidney/liver function were definitely in there

@ItWentInMyEye the pelvic scan came back fine. Wouldn't PCOS he picked up on that?

The elevated liver enzymes and also protein in urine point towards IBD, and can be a side effect of crohns. I'd be asking for a colonoscopy to check for inflammation in the bowel?

The protein went away after the abx, but I will mention it