So depressed knowing that my life will always be dominated by my disruptive digestive system and nothing I’ve thrown at this has worked.

[Roselilysnowdrop]

When I was first diagnosed with functional gut disorders (IBS and functional dyspepsia) almost 30 years ago I always had hope that things would get better the older I got but sadly that just hasn’t been the case.

Despite endless tests nothing has been found and after many years as her patient my gastroenterologist has now discharged me.

Things really aren’t improving as I age at all, in fact perimenopause and life’s stresses at this age have exacerbated everything.

I find it so deeply depressing that despite spending all my spare money on private doctors and tests, endless dietitians/nutritionists appointments, all kinds of supplements and foods/diets, CBT therapy, hypnosis, counselling (you name it, I’ve probably tried it), I am worse now than I’ve ever been. I only work 8 hours a week these days because of my issues which leaves me tight with money and even more low.

Because all tests are clear no one really takes this seriously yet my days are dominated by intermittent symptoms throughout the day- horrible nausea, burping, bloating, lots of uncomfortable gas, gurglings, feeling horrible after eating and therefore not enjoying food one little bit, and a very unpredictable bowel which means I could need the toilet at a moments notice or can flip the other way and struggle. I also seem to have developed a strong gastro colic reflex so can sometimes need the loo soon after eating which makes eating out with family and friends a nightmare.

I feel that I treat my body kindly, I am slim, I exercise, get 8 hours of sleep every night, drink only water, follow a careful diet by avoiding all my known triggers (dairy, wheat/gluten, certain gas forming foods and all low fodmap). I am very careful with my fibre intake also because the slightest increase has me dashing to the loo, same with fat/greasy foods and artificial sweeteners. I’ve kept a food and symptom diary for years and can’t really see many connections or patterns to how my body reacts every day.

No doctor will look at me in a holistic way, will not look at my other issues and connect any dots, I often wonder if my issues may be connected. I’m always utterly exhausted, blood tests are all within range and ‘normal’ so maybe the tiredness is more psychological? I was diagnosed last year, at the age of 52 with inattentive adhd but have not really looked into this much everyone I’ve told have just rolled their eyes and said everyone seems to have adhd these days so I’m kind of embarrassed about it all tbh and as a consequence I’ve shelved my thoughts on this and kind of wish I’d not bothered with the assessment. I did try adhd medication but as usual it made my digestive system worse than usual. I’ve tried endless antidepressants but they all upset me, I’m currently on low dose Nortriptyline but it’s far from ideal for me.

The only thing that I’m clinging on to some hope over is the fact I have had gyane issues most of my adult life and was diagnosed with adenomyosis a few years ago. My uterus is also very retroverted and my latest mri looks (to my very untrained eye) as though it sits on my lower bowel and I’m wondering if this could be causing any issues? (Happy to upload the image if anyone could give me their opinion?). I’m due a hysterectomy in a few months and am living in hope it may help but I’m dreading the surgery so not too optimistic about it all, my gyane won’t even discuss my digestive woes, he says they have nothing to do with my gynae issues?!

Sorry for such long ramblings but I wonder if anyone could relate and if they ever got over this (physically or mentally).

I could have written your post, I did two emergency stops after a meal out yesterday I would not have made the ten min car journey home… I have an underactive thyroid, adhd, I also have womb issues (polyps removed) the only thing that helped my IBS was when I was on mounjaro but then on one occasion I ended up in hospital (due to my IBS and bad diarrhoea that didn’t stop for 3 days and they told me to stop the mounjaro). It’s a nightmare and yesterday I thought I’m going to apply for disability allowance because I need access to disabled toilets

You can buy a radar key online and that will give you access to disabled toilets. You dont need to wait to access those.

That FT4 at 13.6 (12-22) is only 16% into the range. In a healthy person whose thyroid was functioning optimally without medication, you would expect to see that at something like 70%.

T4 is inactive, but should drop an iodine atom and become T3 which is the active hormone. If T4 is low, then so is T3, which generally leads to all sorts of symptoms.

In your situation. I would get a full thyroid test privately and post your results on the Thyroid UK forum at HealthUnlocked[dot]com.

A PP mentioned central hypothyroidism. I wouldn't be ruling it on on the result you have posted. It is not as rare as they say, but standard NHS testing does not pick it up.

I thought I had IBS but it was endometriosis. At one point one ovary was adhered to the bowel wall. No wonder everything was awful with ovulation / periods. I had 2 x endometriosis surgeries then 6 months of hormone suppression 20 odd years ago. It took a while to stabilise but my digestion has been fine for years and years now.

@TickedOffAndALittleFedUpthanks. Omg all these stories of being dismissed are horrific. I've been fobbed off for about 25 years (late 40s now). I have had terrible digestion problems, diarrhea, pain around my tummy and bottom of lungs etc. I've been told it can't possibly be endometriosis as I don't have pain during sex and I'm not in excruciating pain with periods. They are very very heavy and painful but I think I'm quite good with managing the pain. I also feel like I have flu when I have periods etc. So sorry to hear everyone's stories. I was finally referred on two weeks pathway and have a transvaginal scan today and was told by GP to expect a hysteroscopy. I called to check as was worried about how painful it would be and was told oh no I wouldn't be having that, it's just the scan which would be sent to the consultant and I would be triaged within 13! Weeks and the wait to see consultant is about 44 fucking weeks! So I guess it's just more waiting.

Thankfully, my NHS gynae is an endometriosis specialist and it's a BGSE specialist centre, he is the lead in laparoscopy surgery, apparently.

When I was first referred over by my regular gynae (same hospital), following the ablation failure and the first MRI I was told it was a 46 week wait just to see anyone so that's the reason I paid to see another endo specialist my local private hospital (he also practices at our NHS hospital but he so popular he has a very long waiting list), for advice more than anything but because I couldn't afford the £12k private fee for a hysterectomy and excision surgery he kindly expedited my appointment on the NHS, along with a PALS complaint from me due to the previous gynae failing to check me for adenomyosis/endo before performing the ablation. I was assigned my endo gynae (sadly not the one I'd seen privately) and he faffed about for a while, firstly putting me off a hysterectomy and trying to get me to have zoledex injections then last May changing his mind and agreeing with the hysterectomy.

He said he will perform the hysterectomy via robotic laparoscope but if he finds that I do have bowl involvement (hoping not as the first and recent MRI says there were no bowel adhesions noted) he will do what he can but I'll need to return for more surgery with a colorectal surgeon on hand!

Lots of faffing.

I've had chronic diarrhoea since my youngest was born, 8 years ago, which does seem to suggest a gynaecological link. Only started to be investigated now because I went to the doctor about possible stomach ulcer pain and right at the end of the appointment she asked if my bowel movements are regular, told her about the diarrhoea and she immediately referred me for gastroscopy and colonoscopy. Both were clear though (gastroscopy showed hiatus hernia which probably explains my heartburn symptoms) so no help there. Fed up of needing the toilet all the time.

I'm sorry you been through all of this, I can't understand why we are left for years with a dustbin diagnosis and left to struggle, it is so wrong.

It is lucky you are with a specialist for your surgery and given how in demand they are at the moment with huge backlog, I imagine they are doing your surgery because they already know there is an issue with endometriosis and that this is causing a number of your issues.

Why they havent gone through all this with you though feels like a bit of a failing, leaving you to think these issues are all IBS when I am guessing a large amount of them will be related to endometriosis.

I hope once you have the surgery you get some answers and some relief too.

My heart goes out to you, people have no idea how controlling it is when your bowels misbehave frequently.
Have you ever been checked for endometriosis or adenomyosis? My gynae now says my long history of uterine polyps is probably related to the edno/adeno.

Thank you. I've always shelved the idea of thyroid issues as various GPs have always told me everything is ok.

I paid for a panel of bloods with Thriva about 8 weeks ago as I have put of range transferrin saturates and they tested for all kinds of things, I'll look on my report and see what their thyroid testing was. I'll put the results on when I've found them.

Honestly its been a battle just to get help. Ive had to put in complaints, involve my MP and create a fuss. It was still a 65 week wait for an appointment and another 60 week wait for the surgery and these were both on the expedited lists.

My hospital is also a specialist endometriosis hospital but only 2 specialist surgeons and I havent seen either of them as yet.

Following my surgery I had a mirena coil put in and im now having to basically wait to see if it helps but I see no one until next year, at which point I will probably go on another waitlist for surgery for the bowel endometriosis. I dont imagine im getting help any time soon. And thats after years and years of being brushed off and being told there was nothing. This was all only found because I had a cyst that needed removing or I would still be being told nothing is wrong and its IBS.

Its frustrating that my story is quite normal, so many women are brushed off, ignored and left to fight for years before getting any help.

I could have wrote this myself. My step father suffers badly also. Me and mum mum came across a study where they tested 4tableapoons natural yoghurt mixed with 3 of apple cider vinegar, needs to be the one with ‘the mother’ I can send a pic of what I use if you like. Take this 3x a day for a week. Since I have done this all my IBS symptoms have all but vanished, I know when it’s starting or about to flare because I get a funny sharp pain as soon as this happens I take this again and it vanishes. My step dad has been diagnosed with crones and he said his pain is about 80% gone. I’m not sure of the science behind it, all I know is it’s been a game changer for me and has lifted my depression hugely xx

I've suffered with the most painful ovulation for years, weirdly no pain during my periods (only very heavy). The discomfort during ovulation was often so bad it hurt to sit and would last 5-7 days. Always told that's normal for some women 🙄

I'm sorry you've suffered so much. I struggled with all of those symptoms, I'd feel like utter crap just before and during my (very heavy) periods, it felt like a while body experience and would wipe me out for days after.

Gynae waits are ridiculously long in this country. I really hope you get someone with it all, good luck.

I feel your pain. Have you tried amitriptyline or Nortriptyline? I've been taking a very small dose of Nortriptyline for about 10 weeks now, it's far from ideal but I have to say, touch wood, it does seem to be helping with the diarrhoea.

It really should not be this way at all, it boils my blood. Why on earth are they allowing us to suffer for so long. If my friend had been seen earlier she would not have lost a kidney and my sister would t have lost an ovary. It's a huge failure.

I hope you get somewhere, there should be more endometriosis centres seeing that at least 1 in 10 women are supposed to suffer although I imagine it's probably more.

I am very thankful our local hospital is a specialist centre, the nearest is miles away.

That's interesting. Sadly I can't tolerate any dairy but I'll see if it works as well with vegan yogurt?

Unfortunately there are thousands of women who suffer every day from lack of diagnosis and treatment. When I was diagnosed with Hashi's I was horrified reading all the health forums and finding out just how bad things are. Doctors are very poor at diagnosing and treating chronic conditions, they tend to look at symptoms separately and attempt to treat those, then when that doesn't work you must be depressed or have health anxiety!

These are the results, I admittedly no absolutely nothing about thyroid blood test results but they have all seemingly returned as within range.

They have only flagged up my transferrin saturation and active B12 which my GP says she's not concerned over and has advised me to have another blood test in a few months time!?

I'm sure that's how they see me, as a stressed out, neurotic middle aged, menopausal woman who just needs a bit of CBT and all will be fine and dandy. A previous gastroenterologist told me I'd feel better if I just retired 🙄

I had amitriptyline a few years ago for tension headaches and I absolutely hated the side effects, will never take it again.

Oh goodness, how depressing! Bet that went down like a lead balloon.

How are you managing financially? OP says she works only 8 hrs/week rn but also talks about spending large amounts on private treatment or consulations.

I was thinking how OP's life is affected:
Sleep fine
Exercise fine
What she can eat: has to be very careful, huge amount of resources thrown at this
Income, money resources: Sounds manageable but could be better
Leisure or fun: OP hasn't said, but presumably very difficult if not at home

I have no idea how to fix OP's digestive problems, but given OP has run out of ideas on that too, I did wonder if she should put more resources into strategies in meantime that would let her have more fun/leisure/income opportunities.

I had terrible IBS type symptoms plus so many allergic reactions and was then diagnosed with MCAS and put on loratidine, famotidine and montelukast which has helped so so much, I feel amazing. I also take laxido and changed my diet to include bone broth and organised beef organ powder. For the first time in 15 years I’m no longer anaemic. I am still not able to tolerate probiotics so on the search for a very gentle one as think it may benefit me .