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.

Well that’s good and bad news OP. How are you at the moment?

I had something similar a few years ago. In agony with terrible flank pain and the only way to get any relief was pacing constantly. It came in waves, much like I imagine contractions would be. In between the bouts of pain I had a seemingly endless UTI but urine tests came back negative for infection. My rubbish GP tried to tell me it was a virus!

Kidney stones run in my family so pretty sure that’s what it was.

In the end the pain disappeared, never to return again.

OP, I am so sorry you haven't been able to get any answers so far. Your pain does sound a bit different to mine, but what you said about the loose bowels followed by what seemed to be a urine infection, and pain ceasing upon taking antibiotics only to return, it really rung a bell with me - could it be Interstitial Cystitis??

I really hope for you that it is not IC, because it really is a horrible condition and not much is known about it so Drs don't tend to suspect it, also it is notoriously difficult to treat. I had problems for years and years before eventually being diagnosed. IC pain tends to feel as if you have a urine infection, or at the very severe stage it can be completely disabling. Flank pain is another symptom some of us get. Although with IC you tend to get frequency needing to pee more than normal. The triggers which set it off are different for everyone some it's an accident triggers it, some a UTI never goes away, some an episode of stomach bug, some after abdominal surgery, some hormonal.

There's quite a lot of info online about it, the only way to diagnose is to get a cystoscopy procedure with hydrodistention (not the one without hydrodistention you get when awake that doesn't show it up).

Hope you get some answers and treatment soon op, I know exactly the hopeless feeling you describe and it's not nice.

@themachinestops I've just had a quick look at the symptoms but they don't really match as such!

My pain moves around a lot. And differs in severity!

I've thought maybe I'll visit gp tomorrow, try course of strong antibiotics see where it goes from there? At the minute it's just by my naval but feels like a skin/nerve pain. But it moves about like crazy!

I was almost certain it was gallstones but alas, not a stone or a sludge in sight.

Yeah those are IC symptoms I have xx

No idea what it could be, it is strange the pain goes with antibs and then comes back. Yeah I thought gallstones as well when I read your first post. Sorry if I missed it, but has grumbling appendix been ruled out?? Only other thing I can think of would be endometriosis or adhesions from any surgery you may have had.. or some kind of bowel problem, although if you aren't having trouble in that area seems unlikely..

Really hope you get some answers xx

I'm not sure, I thought maybe if it was inflamed or anything it would be seen on the ultrasound today?

Not really having bowel troubles. I wouldn't say anything changed with them between having the pain and not having it.

Never had any surgery, apart from manual removal of placenta after DS2 as it had torn and some was left (had a hemmorage too)

Well the dihydrocodine DEFINITELY has not made me constipated.

The worst stomach cramps and shitting. Also have an audience of both DS' 😫

It really does sound like IBS. It can be excruciating and people faint with the pain. And that would account for the pain moving about. It is not a minor complaint for some people.

I used to get very angry when I was told "Oh it is just IBS." - just!!! What they meant was that it is not something life-threatening, but there is more to life than just not dying.

Mine was sorted by something called Questran which is involved in correcting the malabsorption of bile salts.

Does ibs cause pain sometimes when bowels are normal and you don't actually need 'to go'

It can, there are different types of IBS depending on your symptoms - one is pain predominant IBS. You can have one type or swing between a variety.

I had similar for a long time. First time it flared up was March 2012, then it settled after a year. Then again in August 2016, seemed to settle but then flared up in July last year and was so bad I couldn’t work.

Fortunately my GP practise are good and most doctors are sympathetic. All my scans were normal, bloods largely normal (raised inflammatory markers on one admission)...
I had: CT abdo, Ultrasound abdo, abdo x-Ray, cystoscopy, colonoscopy (normal which confirmed my bowel symptoms as IBS rather than anything more sinister), gastroscopy (found a hiatus hernia). So when they were all normal I went and asked for a Gynae referral because (bear in mind I’m a nurse) I basically said to the GP ‘what else could it be but Gynae?’. She agreed to refer me and the Gynae consultant said he felt my symptoms warranted a laparoscopy to have a look around, especially since I’ve always had painful periods. When they did, they found and zapped endometriosis. The pain finally settled down.

It is a nightmare to have chronic pain they struggle to diagnose. All I can say if keep pushing for investigations until they find out what it is. Hope you get some answers soon.

Stool sample requested and omazeprole prescribed. Another appointment booked for 2 weeks time.

Think it's just a case of testing for everything. The GP I saw today was brilliant. Asked so many questions that nobody else had.

@FaithEverPresent you're not the first person that's mentioned endo. I've been really concerned about something super serious and sinister. But she said a lot of things like that would be seen on ultrasound.

It’s great that you saw a supportive GP. Yeah they basically ruled out anything sinister early on with me (big relief as my Mum had ovarian cancer). My ? diagnoses have included appendicitis, gall stones, IBS, ovulation pain, IBD, fibromyalgia, STI (very unlikely as I’ve only had one partner but I agreed to be tested to rule it out). It’s difficult when it’s vague. One GP said ‘Well you’re a bit of a mystery really’ because my scans and bloods were normal. That’s why I pushed for the laparoscopy- I knew it had to be something that wouldn’t show up on scans and endo is typically only found when they do a laparoscopy.

Hi! Sorry to hear about your pain! I wanted to share my experience of having gallstones. I used to get episodes of excruciating cramp-like pains. They'd start in the middle of my back and radiate out, until my whole stomach was involved. I'd have an irresistible urge to move, so would be rolling round on the bed kicking my legs all the time. I'd also be violently sick and unable to keep anything down. This would go one for 1-4 days at a time. Every time I went to the GP, I got fobbed off, being told it was norovirus/ D&V (I never had diarrhoea!). Blood tests showed raised levels of white blood cells, which indicates infection, but that was shrugged off, as I had no obvious infections, and the tests were clear when repeated two weeks later. I got a bit desperate and saw an orthomolecular doctor (kind of holistic, but with classical medical training). I'd barely finished explaining my symptoms and he insisted it was gallstones. When I had an ultrasound scan to check for this, the sonographer struggled to see my gallbladder, as it was a solid mass of stones... I had my gallbladder out (had to have open surgery, as everything was so inflamed and stuck together due to it going undiagnosed) and have never had problems again!

I am sharing to show the importance of seeing a different doctor (which I know you have now) and possibly asking for testing for specific illnesses. My gallstones went undiagnosed because I was only 22 at the time. They tend to occur in those that are Fat, Female, Fair and Forty. I fit into three of those categories, but it got overlooked nonetheless. You hint at not being slim, so it might be worth asking about gallstones. I hope you get answers soon!

@NCPuffin that sounds awful. I'm so sorry you had to go through that!

The man who did my ultrasound yesterday say he could see very clearly that gallbladder was absolutely clear so definitely not that.

To be fair I'm not actually 'fat' I'm just used to being a 10 so for me I'm larger than I have ever been. I'm about a 16 but slowly losing. My diet has always been shit though!

@FaithEverPresent my last 2 periods have been odd. The first (beginning of July) was EXTREMELY light. The second (end of July) a lot heavier than normal.

Cycles also short. Around 22-25 days.

I get a bit of IBS from time to time and it affects those places on your diagram, the flank pain for me is usually like spasms and doesn't always follow with diarrhoea but definitely different to normal bowel movements

Have you tried peppermint? I had this in a tea format post surgery as nurses said it helps the bowel - may be worth a try? Perhaps ask pharmacist? (I'm not medical doctor)

@flumpybear I've been prescribed some peppermint capsules but they've not really helped

Twas shit, but also a long time ago . Glad you've had it ruled out, one step closer to finding out what it is hopefully! And I didn't mean to suggest you're fat, it was just that you said your drawing wasn't accurate

All the best of luck!

@NCPuffin don't worry I didn't think badly of it! I'm definitely not thin! I'm cuddly

With you seeing your periods have changed, I wouldn't be surprised if you have endometriosis, mine started with painful periods that were agony, the rest of the month I would be ok, then I woke up one morning with a pain so bad I couldn't stand up, I went to A & E, was fobbed off as a uti, went back to GP who gave me antibiotics for a pelvic infection & referred me for a scan, the scan was clear except it showed I had gall stones, I wasn't having any symptoms from them, I was referred to a Gynocologist who said I needed a laparoscopy, I had this done & he found an ovarian cyst & that my ovaries & tubes were grey instead of the healthy pink they should have been, I had a further laparoscopy to remove the cyst, one ovary & my tubes, he found Endometriosis & removed what he could. I was still in pain & had terrible bleeding, I finally had a hysterectomy a couple of months later. My Gall stones started giving me pain after I started HRT, hormonal changes can often trigger the pain to start, I was about three months before I got them done. Ask your doctor for a referral under NHS choose & book to a consultant at your local private hospital if you can, you get seen quicker & if you need surgery can get it done there without waiting too long.

@Nat6999 do you think I should schedule an appointment for before the 2 weeks time?

Currently trying to do a poo sample. Samples are picked up from the doctors at 5pm. Struggling though given the trots last night!

@Nat6999 to be honest if it was endo I wouldn't be adverse to just having the hysterectomy. I'm only young (26) so not sure if they would be funny about that but I don't want any more children!

You need to get a diagnosis first, the only way is a laparoscopy, they like you to try the Mirena Coil before choosing a hysterectomy, if you decide that a hysterectomy is best, get a surgeon who can do it by laparoscopy, it's easier & you are only in hospital for one night, plus having small children you don't want to be struggling with a big scar as well, until you get sorted, take your dihydracodeine regularly, you can take paracetamol & ibuprofen as well, don't wait for the pain to get bad, keep on top of it.