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).

Have you had a calprotectin test?

Yeah it does do that. My mother had hyperthyroidism, I am hypo. There's a lot of discussion on thyroid forums about the ranges and how people go undiagnosed for years. Thyroid problems will affect your whole body. I went on to develop histamine intolerance and had really bad reactions to wheat so I had to go gluten free. I think Covid also messed up my gut somewhat as it hasn't been quite the same since then. I spent about a decade trying to figure out what was causing all my various health issues. It really is a time vampire. I now just sort of chug along using supplements I know work and trying to keep on an even keel but I never feel properly 'well'.

I have BAM and problems with my pancreas and biliiary tree so I can somewhat sympathise.
Have you been tested for Median Arcuate Ligament Syndrome (MALS) or Nutcracker syndrome? MALS and hypermobility are common together.
My daughter has MALS and I wouldn't wish it on anyone.

I have, it’s always low thankfully.

I agree, even though I’ve struggled with my gut health for decades Covid has done something to me too, not dramatically so but things went haywire after and I’ve not felt the same since. It’s as though my body misaligned and never slotted back into its ‘normal’ position and I’m still trying to figure out why.

No, I haven’t. That’s new to me, I’ve never heard of those. I will go look them up, thank you.

Do you have other health issues? Musculoskeletal? Skin? Wondering if it’s more than gut and something systemic like EDS or another connective tissue disorder that affects motility of the digestive system. I will say that even if you are diagnosed with EDS by a specialist, a lot of doctors don’t take it seriously.
Also, how old are you? Could it be perimenopause/menopause? Could HRT help?

Oh, that’s interesting especially the nutcracker syndrome. In 2019 I had a ct scan due to my gut issues and an incidental finding was a large cyst on my left kidney, it had a septation through the middle so I needed it checked for a couple of years and was then discharged. I’ve recently had another ultrasound scan, at my request as I want to keep a check on things and have discovered that it’s grown. I have a GP appointment in a few weeks to discuss things, I will ask if the scan would have picked up anything like this syndrome.

I often wonder why I’ve developed such a large kidney cyst (it’s over 6cm) but no one can answer me. It’s yet another weird thing going on in my body and me going round in circles trying to find answers.

I have always been very bendy and have joint hyper mobility (not officially diagnosed but I score highly on the Beighton scale) but I’ve often wondered if I might have EDS, it would certainly answer a lot of questions I have about my health. I’m certain my mum had it (undiagnosed) as she has had many issues over the years and I think her dad (grandad) had it too. My son has knee subluxations. I’ve read EDS can run in families. I did ask a GP about it once but he dismissed me, told me to stop worrying about everything and basically shot me down so I’ve been too embarrassed to bring it up with any other GP as he made me feel down right stupid for asking.

I’m 54, still have a cycle, I’ve been in perimenopause since about the age of 45 but can’t take HRT atm as I’m awaiting a hysterectomy due to adenomyosis and possibly endometriosis. My specialist advised against hormones as we don’t want to exacerbate anything.

Indeed. But the looseness of the soft tissue in hyper mobility can also affect other tissues in the body. We don’t have a medical service geared up to taking a holistic view so any attempt to join the dots has to be done by us and then we have to advocate for ourselves.

There is an osteopath local to me, she states that she has a special interest in EDS. Although I have exhausted most of my savings trying to find ways to ease my health issues I have wondered if it's worth spending out the £75 to see her and ask her opinion if it's worth me pursuing this a little further. I could pay out £300 to consult with a rheumatologist (I believe they are the ones who can diagnose EDS?) but I'm loathe to spend that kind of money to be told I'm barking up the wrong tree and ending back at square one.

Same re Covid. My gut was never amazing but after a horrible bout of Covid 4 years ago it has gone haywire. There is now a proven link between Covid infection and digestive issues. I’ve seen anecdotal evidence all over FB too on my Reflux groups.

@Roselilysnowdrop I do know someone diagnosed with adhd who has been investigated for every gastric and gynae issue over and over for a decade and has had all kinds of other issues alongside, to the point where she was dismissed as being over anxious about her health. She paid privately in the end to have a laparoscopic procedure to see what was actually going on and was found to have severe adhesions that tethered her ovaries bowel and uterus. The adhesions were removed and the the difference has been incredible. No more bloating or feeling too full to eat, she can eat without worrying about being close to a toilet. It's made so many differences to her it's genuinely been life changing.
She also has autoimmune issues and is hyper mobile in places so there's a link somewhere.

Hi @TickedOffAndALittleFedUp do you know what caused these adhesions and what the condition is called? I'm certain I have something like this or endometriosis or adenomyosis

You say you have adenomyosis, has anyone ever suggested endometriosis? I have had IBS pushed as my issue so much that its actually been diagnosed 3 separate times on my medical records! Going back as far as 15 years ago but with worsening issues I ended up, after it being suggested on Mumsnet, seeing an endometriosis specialist. They found adenomyosis and suspected endometriosis too.
I then had a cyst removed and during this surgery they found endometriosis in multiple places including around my bowel and the surgeon told me this was likely causing a lot of my bowel issues.

This seemed to all flare up as I hit perimenopause so I do wonder if the hormone change worsened it.

I am currently trying an anti inflammatory diet but am waiting to the see the surgeon to figure out the plan but its nice to at least know there is a cause and hopefully there will be some way to improve it.

But I spent at least 10 years where I was pushed between gynae and gastro with both of them saying its not their issue and to see the other one.

I do wonder if this may be part of my problem. I have confirmed adenomyosis. I’m awaiting a hysterectomy and my gynae has said if he sees any endo he will excise it there and then. I’m absolutely dreading surgery but if it managed to ease my gut issues it will definitely be worth it.

It would more than like be caused by endo. My freind had it and it stuck all of her internal organs together. She was dismissed for so long that by the time she had surgery she ended up with a temporary stoma and lost a kidney. I do wish doctors would take female health issues more seriously.

As far as paying in the hope of an EDS diagnosis, I don’t think there’s treatment. So I’m not sure it would be helpful.

I do wonder if I have endo as well. My sister has it and was told she had IBS for years, she eventually ended up in so much pain then a ‘mass’ was discovered on her ovary with oc suspected but when she had surgery it was a massive endomtrioma.

I pushed for a mri after my ablation failed, this was in 2023, the report stated diffuse adenomyosis and deep endo but my latest mri a couple of weeks ago doesn’t mention the endo at all. Nit sure if that means it’s died down in late peri or simply was picked up?

I suppose I will only know for sure once I have my hysterectomy, the gyane says he will excise any endo if he sees any. I am terrified of the surgery and really concerned it will exacerbate my bowel/digestive issues, there are so many horror stories of severe constipation and/or impacted bowels post hysterectomy. I need to stop ‘researching’!!

No particular cause given but she'd had an appendectomy a few years ago and the surgeon noted adhesions but it wasn't considered worth further investigation . The appendix turned out to be healthy and not the cause of the pains but again it was just dismissed.
The laparoscopic surgery was done by a gynaecologist who agreed it could be deep seated endometriosis this was only way to confirm but this was something she'd had to investigate herself it was dismissed by the her GP. Removing the adhesions has also made a huge impact on her periods too, much much less pain and just arriving without a week of agony first.
The surgeon did am say afterwards that it's quite possible they will grow again over a period of time but it's been a while and so far so good.

Adhesions don't show up in any kind of scan properly. The person I know had every type of scan possible over the years and was told repeatedly that adhesions don't cause pain in any case. In fact even the gynaecologist who operated said endo more likely as adhesions don't cause these issues but they couldn't be more wrong.

I think the reason mine showed up last time is because, according to my endo gynae, I was lucky to have have the hospital’s specialist endo radiologist go over my images but I don’t think it was the same guy this time around so it probably is still there. I had an ultrasound scan last year performed by a lovely midwife and she couldn’t slide my left ovary away from my uterus, she said it appeared to be stuck but the mri this time didn’t pick it up (or the radiologist didn’t, who knows?).

I’ll be so bloody annoyed if 26 years of ‘IBS’ turns out to be endometriosis.

So if deep endo was previously found thats most likely the cause, why on earth did they not do more to help then.

Unfortunately endometriosis cannot just disappear but the person interpreting the scans can miss it, so it wont have gone, they just may not have read it right.

On the basis of your symptoms plus your previous MRI I would be asking to see an endometriosis specialist as you need someone that knows what they are doing to look.

I know you said you have paid for private treatments, you could consider a one off appointment with an endometriosis specialist. I did this, ended up paying more for an MRI which was read by someone familiar with endometriosis. However it still wasnt all seen and more was found during surgery as it doesnt always show up.

But I would put money on this being the cause of your issues, especially if its deep infiltrating, and will need a specialist team to deal with it.

I am so sorry but I would guess it is and I completely get the anger because ive been asking for help for 20 years and kept being told its IBS and Fibromyalgia and looks like all along it was endometriosis and adenomyosis. And the annoying thing is, its still not fixed and im now just on another waitlist.

I would ask your surgeon what the plan is for any complex endometriosis, anything around the bowel for example or anything deep infiltrating.

I was told that I would have anything simple removed but anything complex would have to be left.