Severe pain, told to “forget about it”

This is the other thread I’m on. I’m not the OP of this thread (and some people’s symptoms are different to what you have, but could be worth mentioning?). It could also be worth you contacting the NASS helpline that I link to in this thread? https://www.mumsnet.com/talk/general_health/5351788-ankylosing-spondylitis-anyone-have-it?utm_campaign=thread&utm_medium=app_share

Sorry if I’m completely wrong, but I can really relate to your posts (and wish someone had thought of this for me, rather than many years of the wrong scans and tests).

Under NICE guidelines NHS has to provide care and treatment.
I would ask for a referral to Gynaecologists / women’s health specialists.

Hi @Glitterballofdreams - I feel like I could have written your post two years ago. I had emergency surgery to remove my gallbladder and my symptoms pain/symptoms disappeared. About 6 months later I started getting pain in my right side, right under my ribcage that radiated to my back. I panicked! I was adamant it was to do with my surgery, because the pain was so similar to that of my gallbladder attacks.

My symptoms were:

• pain in right ribcage (throbbing/burning/sharp pains)
• pain that radiated through to my back
• the feeling of something being stuck/wedged under my ribcage
• acid feeling in my tummy
• nausea
• dizzyness

I had every scan/test under the sun. My anxiety was at the highest I've ever experienced, because I was adamant I would be like this for the rest of my life. Nobody could tell me what was wrong with me.

I was on a gluten free diet, because specialists even though that could be the problem.

My Dad suggested I went to see his friend who was an osteopath. I thought he was nuts, because what could an osteopath do for me? this was to do with my gallbladder removal..... so I thought/was led to believe.

The osteopath made me do some stretches etc and knew straight away what was wrong with me... he was able to pinpoint all the areas I felt pain. He said it was muscle damage from a combination of poor posture (office job) and recovering from abdominal surgery while having a young baby on my hip. My back was out of alignment.

Anyways, he gave me some stretches and a massage routine (tennis ball rolled up and down by back) and my pain was gone within two weeks. I still get a tightness now, but as long as I keep on top of my stretches I'm fine.

It does sound very similar. My dizziness was due to neck tension, which stemmed from the muscles in my back.

The acid feeling in my tummy was also due to the tight muscle!

Are your ribs sore to touch? do you feel a sense of pulling/stretching when you stretch the area out? if so, it might very much be the same.

I'd recommend speaking to an Osteopath if you can.

Just to add to what I’ve said above - I’d definitely push for an MRI. It was only after the MRI that it showed what was happening in my body.

Hi @Glitterballofdreams I’ve only just seen this thread. I’ve read all your posts (but not the whole thread). Is the pain still under your right rib? This is possibly completely wrong, but has anyone suggested Ankylosing Spondylitis (AS) or Axial SpA?

I had many, many years of lots of scans/tests coming back clear, but it was because they were looking more at organs, etc. due to where the pain was. An MRI eventually led to this diagnosis and it made so much sense.

My pain is mainly under my right rib and in the middle of my back (but mainly the right side). If you think it could be this, ask for a referral to a rheumatologist. I’ll link to another thread I’m on in case it’s helpful.

OP I’m so sorry to read your update that you are still in so much pain. Do you have the funds at all to see a private GP for a second opinion? I’ve known a couple of people pay to go private and they get (sadly) taken a lot more seriously and more specific tests recommended. Any recommendations you could take back to your own GP and ask for referrals.

On a side note, take a look at hazel wallace on social media. You might find her helpful. She was an NHS doctor but she now works with helping women with this sort of thing. Women’s health is so poorly understood.

Really hope you get answers! It does sound very gallbladder-y, by the time mine was taken out I was in constant pain and it also hurt to touch that area, wearing my selt belt was painful. I always thought gallbladder pain was just attacks, but for me it was constant, and it was my gallbladder as it all resolved when taken out.

Glad at least 1 GP is taking you seriously. Fingers crossed you get to the bottom of it.

Amitryptiline is an old fashioned anti depressant, very effective for pain at night. I take 10mg. So don't worry about taking it.

As you’ve already had a CT scan, can you not ask them to change it to an MRI?

Really hope you get to the bottom of this soon! If it is gallstone pain then you need tramadol at least. I know from experience, it's awful. How long ago did you have a baby? My gallstones started playing up when my twins were 8 weeks old. It can happen after pregnancy sometimes I was told x

Hope the scan goes well. Have they looked into slipping rib?

Slipping rib syndrome happens when one of your lower ribs partially dislocates, slipping in and out of place and sometimes trapping the nerve beneath it. It can cause intense episodes of pain that may spread or be hard to pin down

I heard a clip from Naga Munchetty the other day where she said there are certain phrases you need to use to get the GP to take you seriously.

The one I can remember was, "this is seriously affecting my quality of life."

The others were around affecting your ability to work, care for children etc I think...

I’ve heard this issue re: hysterectomies before but not re: mastectomies!! That’s shocking - keeping a boob for a fictional man. So awful.

Not RtFT but it could be pancreas related?

I have had about 15 years of cyclical stomach pains now. And, yes, back and forward to GPs and A and E/ urgent care - did not get a scan until DH came to an appointment (it was a male locum GP as it goes ) which found gallstone. Had this whipped out but still have stomach issues(minus the vomiting I had with gallstone). To be fair the gastro consultant did say my symptoms were not classic gallbladder symptoms.

Back and forth again I go to GP to be told to keep a diary and take mebeverine. I am bedridden for one day of every month, on average.

I have had a private gynae referral to look at endo. If that's what it is , it began in perimenopause and I will be in my mid 50s at diagnosis!

I hear others' stories and empathise - it's just awful. I don't think people get how debilitating stomach pains are . I have never even had any of the oscopies , MRI or CAT scan. Pretty much patted on the head and given painkillers when I went to hospital (93.8 billion times).

I haven't read the full thread yet, but I would definitely get a second opinion.
My old mum was in agony a couple of years ago turns out she'd got a H-Pylori infection.
It caused severe abdominal pain and it didn't show up on anything at first. She had to keep going for tests upon tests and then they found it eventually, as it was microscopic, so wasn't easily detected.

I remember my dad being in pain and turned out he had a peptic ulcer, so all his food had to be thoroughly cooked, and bland with no spice, as he was scared it would rupture.

I hope you get the answers you're looking for.
Hugs to you 🫂

It's so upsetting reading how difficult it is to get taken seriously by our doctors. I am pleased you have finally been taken seriously by a different GP.

Just to add my 2p: my endometriosis was undiagnosed for years despite pain, GP appointments and scans, and only found during an exploratory laparoscopy for fertility problems. They do make you feel like you are going mad.

Sorry, I've not read all comments, so don't know if this has been suggested - but maybe IBS? This doesn't show up on tests but is extremely painful and debilitating - my DS had it, it took a long time to diagnose, pain killers didn't work, but was finally referred to the right consultant and got treatment that worked. I so hope you are able to get something sorted soon

You don't know that's what it is. Asking to see a specific specialist could put them on the wrong path.

@Glitterballofdreams op go back to the gp with a full list of symptoms, and any other factors and discuss why the scan might of been clear if your pain is so bad. There's clearly something being missed and point this out to them. Pain like this doesn't just exist for no reason and explain the level of pain killers you're expected to take to manage this is also a concern for you. By all means if you think you have a certain illness , ask the question of how that illness shows itself and what tests reveal this but keep an open mind to ensure all avenues are explored.

I really feel for you OP keep pushing and pushing don't let anyone tell you you are imagining the pain.
I spent 15 months bedbound from pain. The pain was unbearable. I was pretty much ignored and accused of making it up. When I finally had a hip replacement they found a congenital deformity in my pelvis that was a horrendous mess that nobody had picked up. It should have been picked up when I was a baby. I was basically trying to walk on fractures.

@Glitterballofdreams so sorry you’re going through all this pain. Sounds horrendous 😢
couple of things

1. were you sterilised with essure?
2. keep pushing for a gynae appt to check for endo, not just in pelvis region - a colleague recently had surgery where endo was in her lungs and all throughout her abdomen
3. does anything make it worse or better

This is a good post. I'd go back to GP and specifically say you want tests to rule out endometriosis so you need a referral for a laparotomy.
If they say things like long waiting list or come back in two weeks etc, say you need the referral now and would prefer yo be added to the waiting list ASAP.

I'd also be prepared to say, in very calm tone: 'if you refuse the investigation I've requested, I will raise a complaint.'