3 months of Unexplained Pain in Right Side of Abdomen - Numerous Hospital Admissions, Surgeries, Scans and STILL no Diagnosis!

[jordanaagrant]

Hi - my name is Jordana, I am 24 and this is my first post. It's a long one so I can only apologise, but I wanted to cover everything from the very beginning to see if anyone here could relate to any stage of this and give me some answers/advice?

For years, I have struggled with incredibly painful period pain - more often than not accompanied by very heavy blood loss that can leave me feeling sick, tired, faint, dizzy and with excruciating pain in my legs that is debilitating. I have been put on many different contraceptive methods, non of which have helped whatsoever in relieving my pain. My GP was wondering whether I have endometriosis, and wanted to continue to find a way to make my periods more manageable - she suggested the Mirena Coil.

9th Feb 2018 - I had the mirena coil fitted in a specialist "difficult to fit clinic", due to having a tilted uterus and my GP being unable to fit the device first time around. The procedure was close to the most painful thing I have ever encountered and I have broken A LOT of bones in my 24 years (with a high pain threshold). I was still in pain for 4 days after having it fitted, when it finally began to subside with constant pain relief.

16th Feb 2018 - I collapsed in horrific pain in a shopping centre and was taken by ambulance to hospital after being seen by a GP who worked within the centre. I was admitted to the emergency gynaecology department as they thought my coil may have perforated something. I honestly felt like I had been stabbed, I genuinely looked down to see if there was a knife in me. I had no bleeding, only horrific horrific pain and after an internal pelvic ultrasound that confirmed the coil was still in place, I was sent home by the gynaecologist with a mere prescription for pain relief. Despite me sobbing to him, begging him not to send me away and insisting my pain was very very real, he advised me to return to my GP if i was still in pain after a week and discuss having the coil removed. I was not convinced this pain was from the coil as it felt very different to the pain I had after insertion and am also desperate to keep it as it may be the only thing that helps with my horrific period pain. I was still sent away.

22nd Feb 2018 - I left work early after sitting in the same constant pain that began a week prior. I just couldn't cope anymore with waves of a sensation of being violently stabbed on my right hand side, nausea and overall feeling unwell. Having just moved to London a week or so prior (bad timing I know), I hadn't yet registered with a new GP so went to a walk-in GP centre. This GP suggested I had appendicitis and sent me to a surgical assessment team in a nearby hospital who admitted me, performed an external pelvic ultrasound scan which appeared to confirm that the tip of my appendix was inflamed my 2mm outside of the 'normal' allowance, and scheduled a surgery for the following day to have it removed. After surgery, I was told by the consultant that my appendix appeared normal, but they removed it anyway and we'd hear back from pathology within 2 weeks. I was discharged on 26th Feb to my parents in Lincolnshire to recover.

10th March 2018 - My recovery from what should have been a fairly simple procedure seemed to be heading down hill as I became sicker and sicker with growing levels of pain, nausea and my bowel movements infrequent and black. I went back to a GP walk-in and was admitted. After some blood tests, it seemed my inflammation levels were elevated, possibly suggesting that the infection from my appendix had spread - though this was rare as I had been told my appendix looked 'normal' upon resection. I was sent to have a CT scan which showed fluid in my abdomen and a cyst on my right ovary. My doctors treated this as an infection which may or may not have been post-op, or that my bowel was leaking - I was still too inflamed from the surgery to diagnose correctly, so was pumped with antibiotics. Crohns and Colitis was suspected, but I was too unstable at this stage to seek diagnosis so I was discharged on 15th March with a pending investigation, thankfully under a surgeon who is very invested in my case and wants to help me.

21st March 2018 - The results from my appendix came back as normal - no infection or inflammation was found and most likely the Ultrasound had been incorrectly interpreted. Where a CT scan would have been preferred, my surgical consultant said it would save time and money to have the surgery without. What a mistake that was.

29th March 2018 - Colonoscopy day! The day I would hopefully find out if Crohn's or Colitis was behind my pain all along. It sounds ridiculous to hope for a diagnosis of a life long illness doesn't it, but after being fobbed off and operated on but numerous people, desperate for someone just to tell you that you're not crazy, you haven't made this whole thing up and there's a very real reason for your very real pain doesn't even cover it- you cling to that. I'd researched, and was convinced I fit the criteria. I almost felt relief. Fortunately for my health, though sadly for my desperation for an answer, the colonoscopy came back as clear though some biopsies were taken which I still await the results for.

16th April 2018 (today) - I have an MRI scan - with contrast - of my small bowel scheduled for 25th April. My surgeon is wondering if my previous surgeons missed something whilst performing my laparoscopic appendectomy and is keen to see if there is any indication of endometriosis. After having 6 weeks out of a new job (after only having worked a week), constant agony in my lower right hand side, a clear colonoscopy, an unnecessary appendectomy, a potential infection and a down right rotten time, I am PRAYING that SOMETHING shows in this damn MRI Scan. Doc says next steps after the MRI could be another laparoscopy.

I have been given no other clues as to what else could be going on, and my surgeon has branded me his 'favourite mystery patient'. Whilst it is a relief he's invested in my case, I am living in absolute fear that at some point he's going to turn around and tell me they've tried every trick in the book and he just doesn't know what's wrong with me and I'm going to be left like this.

PLEASE. Has ANYONE out there gone through ANYTHING like this?? Someone please give me some answers; hope; advice; anything.

J x

[Lyn84]

Hi i too went through all sorts of investigations before finally being diagnosed with endo it went from suspected cyst to no cyst to bladder investigations to suspected appendicitis because like you the pain was constantly on my right side until one day i collapsed in agony and i apent 3 days in and out of a and e before a dr took me serious and sent me up to gyny eventually i saw a specialist who tried to fob me off but i wouldnt let her and she agreed to laparoscopy which is how i finally got a diagnosis and the relief i felt from like you said not feeling like your making it up or its all in your head

[feisty-girl]

Hi I have been through a few of your journeys I did have endometriosis first severe periods painfull intercourse it took 6 years to diagnose .then many operations rushed hospital they took appendix out pain didn't go ,abscess exploded pain carried on lost 3 stone in 2 months had a colonoscopy found Crohns large bowel numerous medications and different hospital as pain continued in right groin then eventually after another 4 years they found Crohns in small bowel.so I really feel for you have to keep fighting you now your body .what are your symptoms x

[feisty-girl in reply to feisty-girl]

Oh yes and also rejected the coil so totally understand you not wanting the coil out as so painfull to get in ,they had to do my second marina sedated to get right angel as I also had tilted womb xx

[jordanaagrant in reply to feisty-girl]

Feisty-girl, I think we may be distantly related!! Thank you for your reply. Encouraging to know I’m not alone in this journey.

My symptoms most days is chronic pain, located on the right side of my pelvis that sometimes radiates into my hip and down my thigh. Nausea. My bowels haven’t been too bad as late. Difficult to say with my periods at the moment, because it’s harder to distinguish period pain from this pelvic pain and what is making what worse? X

[feisty-girl in reply to jordanaagrant]

Hugs to you hun hope you get sorted 😚xx

[jordanaagrant]

Update if anyone is interested; yesterday I had to go back to the walk-in GP in London due to increased pain on my right hand side of my abdomen/pelvic area. The GP is concerned that my ovarian cyst may have ruptured. The CT report taken previously showed signs of a mass developing in the small bowel that he was concerned may be growing. He sent me back to same surgical team who removed my appendix and a surgical consultant said they were not going to admit me as they didn’t see the problem as surgical. Instead I would have a blood test and await the results to check there’s no infection - and had the cheek to ask me if I’d considered ‘something as simple as IBS. Most girls you age think it’s something more severe.’ Mortified and humiliated doesn’t cover it. I know my body.

I sat and waited for 6 hours when my pain spiked and I was left in tears and crying out. They admitted me and my pain has been unresponsive to pain relief. I have had Tramadol, Morphine and paracetamol, and nothing has helped which is so concerning!! I’m in so much pain, I can’t sleep, I can’t do anything!! Hoping they’re going to offer some form of scan at least to see what could be causing this.