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).

OP, you need Mosaic Medical.

Doctors who, as you say, will spend time to connect the dots.

They are deeply passionate about this sort of health care, I think your case will strongly fit their areas of expertise. They are mainly doctors who have done additional qualifications in lifestyle medicine, functional medicine etc. I think everything can be done remotely so distance isn't a problem.

It's private, I'm afraid. But I think there's a free 15 minute call to decide if you want to go ahead though.

(No I'm not on commission!)

Pelvic congestion can cause the issues you describe, and would not be found if tests have mainly concentrated on looking at digestion.

I was eventually diagnosed with Crohn's disease in my 30s after suffering since my early 20s. Ten years later I had a hysterectomy and miraculously the Crohn's went away. Technically it shouldn't be related, but it obviously is.

I started on 20mg but had to go down to 10 as it was leaving me feeling like a zombie. I could try 15mg every other day and work up that way, maybe.

I’m sorry you have suffered with this too. I have joint hyper mobility and often wonder if I may have EDS but I feel as though the doctors don’t take this seriously, I mentioned it to a GP once and was totally dismissed so I’ve not mentioned it to any other doctor.

I’m hyper mobile and often wonder if it’s connected to all my issues.

I have had a discovery call with them a few years back based on a FB recommendation but they are so expensive and as I only work a few hours a week sadly it’s beyond my finances.

Oh, that’s interesting. When I had my first MRI scan in 2023 it detected the adenomyosis and some endometriosis and as an incidental finding it mentioned moderate disc degeneration and then pelvic congestion syndrome. My gynae never mentioned this and I only discovered it when I requested a copy of the report.

I recently had another mri and this wasn’t mentioned again although I didn’t have the contrast dye as previous so maybe it didn’t show?

Why am I not surprised that you are hyper mobile? With hindsight my mother was hyper mobile, I was always a ‘clumsy’ child, fell over my own feet, repeatedly turned by ankles, not well coordinated and so on. Both my children had knee problems and one is hyper mobile as an adult and has had EDS suggested several times. Along with a myriad of other possibilities. Autoimmune connective tissue disorders often overlap with each other so can have an impact on digestion and on gynae stuff too.

I was very lucky, I developed Raynaud’s in my late 50’s quite suddenly and quite severely. My GP immediately referred me and we had private medical cover then so I was seen quite fast. Blood test confirmed something was happening and the consultant thought that over the next few years I would develop more symptoms of systemic sclerosis. He was right and the diagnosis was confirmed after lockdown.

Yes that's the range I'm familiar with, so you can see how low your T4 is. T4 is the inactive storage form of thyroid hormone. Your body needs to convert that into the active T3 form. The NHS hasn't tested your free T3 (because their policy is if T4 is in range, there's no point, which many thyroid patients would disagree with). Your best bet if you want to see whether you have enough active T3 hormone is to get a private thyroid panel done. You can send off for finger prick tests from companies like Medichecks, and get a full panel done. The fact your sister has thyroid problems could mean you may too, it is hereditary, or at least, autoimmune conditions are.

I totally sympathise - it’s miserable.
My main issue is acid reflux - I do all the lifestyle changes and it’s never totally resolved. This means I only drink water or herbal teas when out (at home I make smoothies) and am v restricted on food.

I also have major wind issues - sometimes I have to rush to the loo & it’s explosive. I think it’s fibre related but have never pinned it down totally. I can be fine for weeks and then it’ll come back. I’m waiting for a SIBO test now on nhs. I get a lot if gurgling but this seems to be a bit better recently,

My calprotectin is always high and I have large bowel inflammation but they won’t diagnose IBD.

I have a partially marinated intestines (found on CT scan last year).

All these things and no-one has joined any dots - Gastro just sees them as separate issues, but how can they be?

i’ve also spent a fortune on supplements, etc.

This has all been since peri-meno kicked in (am now 2+ years post).

Am also slim, fit enough, eat very well, have energy, cholesterol is ideal etc

I have quite high anxiety levels though and there’s a massive gut/brain connection. I often try to mitigate stress by various means - deep breathing, remaking, etc.

I wish it would all fuck off, my life could get back to normal etc. I try my best but it’s a bit miserable.

Yesterday, I had a transvaginal duplex ultrasound which showed reflux in all four main pelvic veins.

Because I have it, I've done loads of reading about it. In my case, the pelvic veins are actually the source of my leg varicose veins, but I don't have other issues. However, what you describe is a much more usual presentation of pelvic vein problems.

It sounds like a possibility in view of what you've said.

Curable app.

It doesn't change whatever physical thing is going on.

It does change the response to it.

It has changed my life.

Have you tried calcium butyrate? That can be a game changer for ibs, especially ibs-d. Also, molybdenum to help you to digest sulphur.

Prednisolone 5mg tablets

I could’ve written this! Sorry you are going through it, it’s awful and has a huge impact on day to day life. I also have adenomyosis and diverticulitis. I’m on waiting list for hysterectomy and do hope that will improve things as my flare ups are worse when I’m due or on my period. After lots of research, I am sure I also have mast cell activation syndrome - it’s worth a look. I have recently gone to a low histamine diet and take fexofexadine daily (prescribed by my GP) - both have made a huge difference. I hope some suggestions from this thread helps you 🤞🏻

I really do need to look into that. I'm certain my poor went through her life with undiagnosed eds and my son has suffered from knee subluxations since he was a small child but doctors don't seem to take joint hyper mobility seriously. Well, none I've consulted with.

Thank you. I've honestly never really given my thyroid a second thought because all my tests have returned as 'normal'. I didn't know thyroid issues run in families, my sister has hypothyroidism and parathyroid disease and I believe my maternal grandfather has hyperthyroidism.

I totally empathize, I don't think people fully understand the absolute misery which comes as a result of a poorly functioning gut. I know we are supposed to have our stress levels and anxiety under control but for me it's a vicious cycle, I find it so hard to remain stress free when my digestive system has a mind if it's own and is so unpredictable.

Ooh, thanks. I've not heard of that one. Off to Google...

No, I haven't (not heard of it either)? I will have a look, thanks.

I’ve always suffered with loose stools. That was my norm. I also never found a pattern when they were really bad. Since my hysterectomy (for cervical cancer) they’ve been much more solid. Occasionally I even get that elusive one wipe stool which would have been unheard of pre hysterectomy. I still get bouts of bad diarrhoea and the stomach cramps sometimes, but no where near to the same extent.

In my case there was a definite gynaecological link.

Sorry you have been going through a similar thing. I hope the hysterectomy helps you too.

I will look into an antihistamine diet and the fexofexadine, thank you.

This sounds miserable OP and I have no real advice except that a daily Optibac might help a little if you haven’t tried that.