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Am I Out of Options?

It's been a few months since I posted here where the advice I received was to push back against my GP's misdiagnosis of IBS-C. Today marks 203 days since I last had a day without symptoms. This is where I am now...

After an 8 day streak of constipation started on October 6th last year, I ended up in A+E with severe gut pain, so severe I couldn't walk (note I am tattooed, AFAB, and have undergone dental procedures without anesthesia before so my pain tolerance is considered higher than most). After bloodwork showed 'nothing remarkable' besides extreme dehydration I was sent home with laxatives. I would end up taking daily laxatives for the next 2 months and eventually the constipation subsided although my old regular bowel rhythm still has not returned.

I was tentatively diagnosed with IBS-C in November. What followed was an extreme elimination diet for a month and a month long course of amitriptyline (a TCA anti-depressant) to try and cure the insomnia caused by the bowel pains. Both of these worsened my condition.

As my symptoms continued to worsen I was referred to a dietician and a gastroenterology specialist. The dietician placed me on a 'gut brain cleanse' using probiotics, a low FODMAP diet, yoga and 'the power of positivity' to cure what she called 'obvious psychological distress' which I have been doing for the last 55 days. To the surprise of no one, it has worsened my symptoms yet again. I am speaking to the dietician in a few days where I'm going to tell her her services are no longer required.

Both the dietician and my GP have tried to pressure me into seeking CBT (cognitive behavioral therapy) as they seem to agree my condition is not physical and is simply a symptom of anxiety and stress. As someone who has struggled with poor mental health most of their adult life, I know how my body reacts to anxiety and stress and it is not this.

At the recommendation of this forum I approached my GP about investigating for endometriosis. I was sent for an abdominal and an transvaginal ultrasound and when nothing showed up I was told it was no longer worth pursuing.

After recently speaking with my GP he once again tried to force CBT onto me which I again refused having sought it out many years ago and it being absolutely bloody useless. Instead he prescribed me sertraline (as SSRI most commonly branded as Zoloft). He is aware of my prior mental health issues and the potential risks of putting me on an anti-depressant this strong. He believes if we can 'cure [my] brain, the stomach will heal itself'. I have made the autonomous decision to not begin this course of medication until I have spoken to my referred gastroenterologist in the coming weeks to see if they think it is an appropriate treatment option as I am not willing to put years of my healing progression at risk for a last ditch attempt from a GP who has frequently hinted he believed I am lying, exaggerating and fantasising my symptoms, even implying they are self-inflicted.

I have tried every over the counter pain relief you can name and none of them help for more than a half hour or so. The only successful brand contains codeine meaning I cannot take it as frequently as I need it.

So, I am back here once again looking for any advice to make this journey easier. For context I am a 20 year old, AFAB person with a height of 5'6 and a weight of 57kg. My GP still maintains his initial IBS-C diagnosis. Apart from the one blood test, a urine and stool sample, the two extreme diets and the two ultrasounds, there has been no physical investigation done over the last 6 months. The A+E consultant and my GP claim to have ruled out diverticulitis, celiac, all IBD's including Chron's and Colitis and any infections.

By this point it seems fairly obvious this is no 'little bout of IBS' as they keep telling me so I'm not sure if this forum is still the right place for me to be posting about this but I'm not sure what else to do.

I have 4 days left of my dietician's recommendations and 6 days until I speak to the gastroenterologist to triage my symptoms and discuss my GP's sertraline prescription.

Currently my daily symptoms are nauseous feelings with occasional vomiting, near constant stomach cramping, strenuous and infrequent bowel movements , blood in the stool, pain in the back and ribs, longer and more intense menstrual cycles, breathlessness, skin rashes, pain when peeing and constant near complete exhaustion.

I am unable to work, to exercise, to socialise, somedays I can barely take a shower without almost losing consciousness or getting the shakes. There's days where I can barely eat and it takes 4 hours to drag my body out of bed because of how painful it has become.

My whole world has been ripped away but I refuse to give up and roll over and accept that it will never return. It feels like I have tried everything. If anyone has any suggestions or even just words of wisdom as to how I am supposed to navigate any of this I would really appreciate it.

  1. I'm so sorry that you're dealing with all of this. Hearing how strong and constant your symptoms are, and especially the presence of symptoms that aren't related to IBS at all (blood in the stool, intense menstrual cycles, rashes...), it really sounds to me like something else is going on. I feel like your doctors might just be dismissing you because you are a 20 year old, AFAB person. I was also diagnosed in my early 20s and my (male, 50-60 year-old) doctors told me that all young females were just way too stressed but other than that our symptoms weren't real. It's beyond frustrating, but in your case, I would absolutely continue advocating for yourself. You deserve to be heard and taken seriously!
    Your story reminds me of this story that our community member shared: https://irritablebowelsyndrome.net/stories/my-story-advice-for-everyone. She went through a similar process of being dismissed by all doctors at 17 years old, before ending up in the hospital and finally receiving a real diagnosis.
    It seems a bit strange that you've had so few tests done considering how bad your symptoms are. I'm glad you didn't take the strong antidepressant your GP prescribed you. Since he is claiming that you're lying and exaggerating (no one deserved to be told that when they're suffering at much as you are!), it does not sound like he has your best interest at heart... Is there a way to have someone else come to the gastroenterologist appointment with you, to help you get heard? Could you also try seeing another GP?
    I really hope that your upcoming appointment will be helpful. Please keep us updated, and please don't give up and don't stop advocating for yourself.
    Sending positive thoughts, Karina (team member)

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