I am truly at a loss as to what is causing all of my health issues? Can anyone help?

[MellowAfternoon]

Sorry this is long but I am at a loss right now.

I know that no one on MN is able to diagnose me but I have been back and forth to the GP surgery for years and am still getting nowhere with my health issues. I have struggled for years with ongoing physical issues and they are not getting any better. I am getting more frustrated and am not sure what to do next. At the start of every new year I tell myself I will get this sorted once and for all yet despite being very proactive with a healthy lifestyle I am still experiencing the same daily issues and quite frankly they are fucking up my quality of life, I am miserable.
Not helped that my GP surgery (like most I expect) have a 'One appointment, one problem' policy so if I go with a list of my issues they won't even look at it and will ask which is the most pressing issue and deal only with that. It would take my months of going back and forth to deal with each issue separately and I am pretty sure most are connected.

I was convinced for a long time that my issues could be related to a B12 deficiency or thyroid issues but my latest panel of bloods taken this summer have all come back as normal. I feel I am going round in circles feeling more dreadful each day.

Here is a list my issues and wonder if anyone can relate and maybe offer up some advice how to feel better, maybe suggest something that I haven't yet tried?

I have dealt with decades of gut issues:- bloating, nausea, burping, acid, excessive gurgling. Daily loose stool with urgency in the morning, bloating in the evening, lots of flatulence, rectal discomfort and a feeling of pressure which makes me feel as though I need to go.
Issues are made worse by eating, my gut seems to hate food.

Over the years I have seen 5 gastroenterologists and 3 deititians. (paid privately for many of these).
I follow a personalised low fodmap plan, I avoid my known trigger foods which for me is dairy, eggs, chicken, onion, garlic, wheat, caffeine, sweeteners, too much sugar, too much fat, certain fruits & veg, high fibre (and several other foods).
I keep my weight low I exercise daily and practise gut directed hypnotherapy and yoga yet still I suffer from the gut issues daily.
Over the last 5 years I have had 2 colonoscopies, 2 gastroscopes, a pill camera endoscopy, a bile acid malabssorption scan and various scans. I am clear for IBD, BAM, h pylori and coeliac etc. I tested positive for hydrogen SIBO but the antibiotics (rifaximin) made me feel worse, gastro says to ignore the sibo diagnosis as in her opinion there isn't enough research on sibo yet?!

I take immodium when needed and other IBS meds but they have little positive impact.
SSRI's make the diarrhoea worse, TCA antidepressants leave me zombie-like.
I have truly had enough of these digestive issues, I have just had to race home from taking my dd to work as I suddenly needed the loo. This is my life now. Completely dominated by my bowel.

I have also struggled with decades of gynae issues, with very heavy bleeding and uterine polyps which left me anaemic for years (ferritin levels of 3 which the GP did nothing about).
Decades of painful ovulation. Endless gynae visits and procedures for polyp removal. I have had 5 hysteroscopies and in 2022 I had iron infusions due to the low iron stores followed by a uterine ablation op. The ablation has failed as I now suffer from excessive pain during each period because the trapped blood can not escape (big regret opting for this procedure).

I requested a MRI late 2023 and it was discovered I actually have endometriosis and adenomyosis (throughly pissed off it has taken 20 years to discover this). I am now on a waiting list for a laparoscopy (god knows when that will be).
I am 51 and in perimenopause which is certainly not helping issues. I have tried various HRT's but they make the post ablation failure pain worse. I am also on a waiting list to see a NHS menopause specialist as my gynae has no knowledge or interest in HRT so again God knows then this appointment will come through.

Other daily issues (may or may not be related but I will list them all):-

Regular mild headaches and aura migraines (I have suffered with the aura migraines since I was pregnant 20 years ago and now them during each period so hormonal for me). My mum, sister and ds all experience these too

I always have a blocked nostril and post nasal drip after I eat

Sore/raspy throat (often on the same side as the blocked nostril)

Tinnitus (had mri for this, nothing found)

TMJ disorder and tight jaw (also grind my teeth at night). My teeth are also wrecked maybe due to the night grinding (I have gone through loads of mouth guards but end up biting through them)

Sore tongue a lot of the time too

Thinning hair

Itchy scalp (nothing on scalp though)

Itchy skin in general and sensitive skin (skin will mark with just a plaster on it and I often experience petechia and have done so for years)

'Off' vision eg lots of floaters, slightly blurry vision and blobs in vision. I have regular eye tests and all ok (last one 2 days ago)

Tired a lot of the time even though I get around 8 hours per night

Cold all the time, I carry a hot water bottle with me 24/7 (also have this for the gut/gynae issues)

Cold hands and feet and mild raynauds during the winter months

Most of these issues have been with me for years but perimenopause has exacerbated it all, a bit like a fire has always been slowly burning away and peri has been like a shit load of gasoline poured over it all.

I can't afford to go privately for anything anymore as I am not working atm.

What can I do to try to get my health back on track? What have I missed? I keep slim, exercise, I only drink water, I have never smoked or taken drugs. I am at a loss and going back and forth to the GP surgery is really getting me nowhere.
I want to get these issues under control but how can I when I don't know what is causing them? It goes without saying that my mental health is shot to pieces with this.

Any ideas?

This is my hair. I wear a hair topper as I can not face walking out of my house with hair like this.

And a photo from yesterday. I popped a plaster on my skin for 3 mins and this is the mark it left after I removed it.

Have you had your ferritin level checked? Some of these symptoms could contribute to low ferritin. Optimal is over 100.

The gut issues, migraine, tinnitus and TMJ could well be stress/anxiety related; what therapies have you tried to date?

With the gynae issues can you push for a hysterectomy? Personally speaking it was the best thing I ever did (equal to laser eye surgery).

So sorry you're dealing with all this, it sounds awful and I can see how peri will be adding to your symptoms as well, what a nightmare. I don't have any answers unfortunately but wondered if there's any trauma in your past that might be contributing to your body being at war with itself? Obviously no need to disclose anything here but I know how much unexpressed emotions or unprocessed trauma can impact our bodies, especially gut, and then of course the understandable stress and frustration of the symptoms sets up a spiral of worse symptoms. Rea

endometriosis of the bowel sounds likely

I have had cbt, emdr, counselling, gut directed hypnotherapy and standard hypnotherapy. Currently under the UCLH's neuro-gastro department and have had some acceptance therapy with them, I use the methods they have taught me every day but I am still struggling with these gut issues.

I would love a hysterectomy tbh as the pain each month is awful, my gynae went out of his way to put me off, explaining all the things that could go wrong. Pretty sure it's more about saving the NHS money as my private gynae was more than happy to recommend the op but I don't have the funds for such an expensive operation.

I'm not medically trained,

However if this was me, I'd do a mould/metal/parasite detox and also begin an AIP (anti inflammatory) diet, for at least 60 days before any reintroduction of foods.

I'd check your home/car for mould also.

My ferritin was at 3 for years which is why I had the infusions in 2022. Now at 80.

I really don't think so, I had a good childhood and have been with my DH since we were 16 and have a good relationship.

According to my gynae the MRI didn't show bowel mri but obviously he won't know for sure until he does the laparosopy. The mri did say 'deep' endometriosis and diffuse adenomyosis. I also have a nodule in the pouch of douglas and a very retroverted uterus which I am sure causes the rectal discomfort but again gynae says no, in fact he wasn't at all interested in my digestive issues and wouldn't discuss them as he says they are not related.

I have looked into an anti-inflammatory diet, need to look into that further.

Wouldn't mould affect everyone else though? I live with dh and my two dc and they are fine.

I did a fully comprehensive stool analysis 2 years ago. It was clear for parasites etc but did show the gut dysbiosis which I am not surprised about.

This is terrible and I'm sorry they aren't helping you.

Did your say how old you are? Any medical issues run in your family?

Do you go on holiday and do you feel better when there? That wouldn't pinpoint it but could be reduced stress, change of environment or food. It'd just be good to know if you ever feel better.

I think I'd be pushing for a hysterectomy too. Several friends ended life long illnesses when they finally got one. If you're young they really won't want to do it, you need to be firm, insistant and not even entertain their 'what if'.

Good call.
I had multiple issues too and ended up using AI to check across my specific range of symptoms. Turned out i had haemochromatosis my ferritin was almost 3,000 optimal is below 100 i now keep mine at 30.
sadly GPs dont have the time to look at you holistically hence its easy to get the real cause overlooked.

It's probably not all one thing. It sounds like some of it is semi explained at least. You know what's causing the gynae issues and clearly have dietary triggers. I did at first think coeliac sounded likely. Be aware that this can develop at anytime, so if you've not been tested for it relatively recently you might want to revisit that possibility. The burping and related issues could be reflux (as a separately occurring issue, I mean, rather than caused by your other gastro issues). It can be controlled with medication. And I'd get your thyroid checked and ask for the actual result in numbers, not just 'it's fine', as I've heard tales of people being fobbed off because the guidelines are broad. You may find you're borderline and can push for treatment.

I sympathise with many of these issues - I too had reflux, heavy periods with migraine and skin problems ongoing, as well as just feeling generally unwell. My thyroid is borderline and anaemia diagnosed. I requested a test for coeliac as my dad is coeliac but it came back negative but if likely symptoms occur I have been told I can and should request to be tested again. My GP did take a holistic approach and book the tests all in one go, but nothing overarching explains all my symptoms, so it's probably just bad luck in my case.

Mould can affect each person differently, and some may be hyper sensitive to it.

Have a look at The Endo Spectrum on instagram, she did the AIP diet and talks at length about it for her Endometriosis and speaks very highly of it. She's a wealth of knowledge actually.

I am not a doctor. But hair loss, skin sensitivity, headaches, sore mouth, tired all the time are all symptoms of lupus, an autoimmune disorder. If your body is over-reacting to everything, I’d suspect this could be part of your diagnosis, alongside the endometriosis.

Some of your symptoms sound like autoimmune disease symptoms so an anti inflammatory diet may help.

I tend to experience most issues wherever I am tbh.
I'm 52 in March and definitely in the depths of perimenopause and that is most definitely not helping any of my issues but most were there before though.
I am going to try to get an appointment with my gynae as soon as I can and see if I can push him to agree tona hysterectomy.

I still feel that it could be a thyroid issue but I have my results online and they are well within the normal ranges. My grandad struggled with hyperthyroidism, my mum is borderline and my sister is currently having issues with hypothyroidism and parathyroid disease. I've read thyroid issues can run in families?

Have you been checked for rheumatoid arthritis as that can manifest in the bowel. Definitely sounds like something autoimmune if going on.

Have you considered candida overgrowth?
Agree with the pp who suggested possible parasites.
Do you take probiotics?
Auto immune issues are more common in women, who are pushed out of their natural alignment, and only you will know how that manifests for you. Read some Dr Joe Dispenza and research meditation.

I don't believe this is stress/trauma but there will be medical professionals who may eventually go there rather than focus on the physiological problem when they can't find clearer answers. Of course this will exacerbate alot of health issues.

From my own experience, I had very erratic bowel problems for years. Nothing would show on scans or colonoscopy. But, it was clear there was something different. When you can't see anything such as inflammation or any structural issues then I always consider a problem with motility which is the way the nerves and muscles are transitioning anything through the digestive system. I have Ehlers Danlos Syndrome ( EDS). It can cause lots of weird issues and gut motility problems are so common yet so hard to diagnose. I eventually had a private test called camera pill. You swallow a tiny camera and eventually poo it out. This demonstrated the speed of transit was abnormal ( way too fast). This is a very good definitive test for checking motility issues ( a colonoscopy and scan can't show this). It also takes pictures though to check for any more visible issues.

If you have endometriosis then I understood you have the risk of adhesions. So I also have bowel adhesions all over which have a massive impact on digestion, they cause pain and have caused bowel obstruction for me. My adhesions are from major surgery. Again, you can't see this on a scan . This makes these situations nightmarish because the suffering can be unbelievable but so many will gaslight you im so sorry to say.

Something that we with EDS often tend to have is Mast Cell Activation Disorder. ( I know others who have this without EDS). So we react strongly and in weird ways to things, often food related. Problems with rashes and reactions to perfumes for example. Again - nightmare to get people to listen. Its a problem with histamine and how we process it. I don't know the exact science on it.

I can't tell what's happening for you but my experience is here just for consideration, for further research and exploration.

Getting these things diagnosed is incredibly difficult unfortunately.

I think I'm in peri menopause and I believe that causes or exacerbates so many issues in our body.

I suffer from chronic low ferritin. I had a severe reaction to the iron infusion. But keeping that number up can take time. 80 is a good number compared to many but some would say 100. I can't recall the guidance but the NHS tend to think the bottom of the barrel is optimum. Many disagree.

I have a multitude of autoimmune conditions btw also. They may be behind it.

I presume you’ve been checked for Lupus? If not my sister in law has a rarer form of EDS and has many of your symptoms.

I haven't, I was unaware it could affect the bowel, thanks.

I did a comprehensive stool analysis last year, it came back clear for parasites and candida overgrowth.
I have tried probiotics but they made me feel worse.
I do meditation and hypnosis every day but I'll have a look at Dr Dispenza thank you.