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?

@MellowAfternoon That's interesting BrightWolf as I am awaiting an ADHD assessment and also have many autistic traits. I didn't know physical issues could be related.

EDS is linked with neurodivergence

@MellowAfternoon mold exposure can cause many of those symptoms - it might be a good idea to check for any mold or damp at home / workplace etc. Good luck to you

Won't deal with any of the underlying causes, but have you tried having apple cider vinegar half an hour before meals?

Dh and my sis both have chronic gastro issues and they both say it helps when they remember to do that systematically before meals. Just a tablespoonful diluted in a small glass of water seems to make a big difference.

Thank you, I will look into this however, I may be a little naive on this subject but wouldn't there be physical signs of mould? There is nothing to note around the house, no signs or smell of mould (no squishy floors or blistering paint etc). DH is very good around the house and with DIY being a very practical person and I am sure he would have spotted any damp or mould or is it a more insidious thing?

I haven't but I do have some ACV I was going to use for salad dressing so could try it. I follow the Glucose Goddess, Jessie Inchauspe and she was suggesting a dose of acv before each meal in her latest YT clip.

Yes, EDS and Neurodivergence certainly linked.

The GP and most doctors will dismiss and won't know this based on my extensive experience interacting with multiple doctors 🤦. They just don't cover it adequately in medical school I understand.

I know one has to be very cautious online but on certain closed FB health boards, we definitely have much greater collective expertise on EDS than the majority of GPs and even most consultants. You obviously have to be cautious of nonsensical claims but there are some very knowledgeable people.

There are a few things you can try OP even though I know it wont answer everything. Having an EDS diagnosis doesn't do much apart from, for me, gives me some understanding and knowing I'm not insane when the gaslighting starts. Alot of professionals do understand the EDS / gut/ gynae problems but not many.

I think trying out an antihistamine is worth doing. I do this and I don't ask the doctor I just sort it myself. I'd look into histamine triggers also such as the high histamine foods.

The advantage of knowing whether you have something like Lupus or Sjogrens is there are some disease modifying meds you could try ( some more risky than others). Hydroxycloriquine for example. It was no good for me sadly but reviews online are for many very positive in terms of managing systemic inflammation.

I'm on a closed mast cell group on FB. The expertise on there is way beyond any GP. I don't think there's much more one can do as a start other than the antihistamine trial and lowering histamine triggers such as foods. Avoid perfumes and chemical heavy sprays etc. Bleach for example burns my nose and face even just smelling it from afar.

I appreciate with all this you can become obsessed and depressed if you're on all these groups and falling down a rabbit hole. Sometimes it's helpful as you'll get significantly more than your doctor will understand but you need to step away also as you can become overwhelmed.

With regards to any medications, I always research myself on Drugs.com those meds I take / try.

The gynae sounds vile and your typical gaslighting pig. Would you have any joy in this climate requesting another consultant - female perhaps. I don't know but I think I'd enquire delicately if it was an option. I doubt you'd be the first.

I can see by looking at him that my own son has EDS. It is worrying but I keep a lid on that for now and just hope he'll be ok.

It manifests completely differently for people so try not worry too much about your daughter and her struggles as easy as it is for me to say. ❤️ My son is ND btw ( the EDS/ND link).

@MellowAfternoon I don't want to plant ideas, but you can have had a decent childhood and still have trauma and your body will react to it.

Anyway, you said you have adhd and autism. This is a lot. You likely have had great challenges with it. If you mask for example and spent decades not being yourself it's not surprising for the body to 'play up'.

No, the fact your DH hasn't spotted anything doesn't mean anything. He's not you and we are all unaware of many things going on with us. I wouldn't assume a perfect psyche because that's not realistic.

You say you sleep but feel exhausted. Honestly much of what you say reminds me of a dysregulated nervous system. I don't know if this applies to you, many health issues have overlapping symptoms, but ADHD and autism are surely no walk in the park and you might have developed some unhealthy coping mechanisms without being aware.

It's one avenue I would explore. My friend has a whole host of physical issues. She lives in a country that doesn't require referral to specialists. She can just call and see one. She's been to all. They find nothing. And I see how she lives, her terrible marriage (which she is in denial of) and just think it's her body sending her all the signals.

I dont know. Because women also get a lot of medical gaslighting.

@Twatalert I do see your point.

The stress / trauma thing can kind of divert attention away and doctors love to use it as a get out and to gaslight. EDS is a genetic defect of collagen. That genetic defect ( high inheritance pattern) is often the root cause of autoimmune issues and MCAS and even higher anxiety (due to EDS physiology) according to studies. So the cause is not stress or trauma, yet this certainly impacts it.

Once one knows what's going on with their body then I think one can start looking at how they can add anything to their physical well being through practice such as meditation or stress management.

Please understand - doctors really don't know everything. I have EDS, I have MCAD, I have POTS, I have 3 autoimmune conditions, I have lost parts of my insides, I've had sepsis. I could go on.

I had 10 years of being told nothing was wrong and tests were clear. This mentality must stop. Kindly, it's a bit like the gaslighting doctors - even though I understand your intent is probably good.

@Tittat50 you seemed to have taken my post a bit personal. I didn't speak about EDS or your experience of symptoms. I simply shared my own experience and I do feel a bit judged. Not recognising the psyche is just as much gaslighting, and I know it because I have received inadequate therapy by the NHS three times. I also presented with a host of physical symptoms for years and not one doctor suggested looking at my past, which ended up being the answer for me.

And whilst you receive treatment for your EDS on the NHS I receive none, because treatment isn't available and I have paid thousands for years privately. I have literally had to figure out my own treatment plan over YEARS. So please stop insinuating I participate in gaslighting like I don't know what I'm talking about.

@Twatalert ah ok. I hear you and your experience there. 🙏

Ref EDS; no treatment either. I don't think anyone does for EDS on the NHS. Autoimmune conditions - yes fortunately.

I take venlafaxine antidepressant. Solved IBS and fibromyalgia. Side effects are a nuisance such as constipation and sexual dysfunction but it's worth it!

Sorry haven’t read the whole thread but a lot of your symptoms sound like I was before I finally got diagnosed with an underactive thyroid.
For year my GP fobbed me off as being sub clinical until it eventually tipped over the tsh magic 10 that they use to diagnose.

do you do your thyroid bloods first thing in a morning and fasted? Don’t take biotin for 7 days before either. This gives the most accurate result, what are your TSH levels? Have you had a TPO antibody test done?

I hope you get sorted, sounds like you’re really struggling. It’s disgusting that they just go off lab results and don’t look at the picture as a whole with the symptoms.

Thank you, that's so very helpful.

I will definitely trial antihistamine and look into an antihistamine diet.

I would very much like to change my gynaecologists as I really do not warm to the one assigned to me. I'm not sure how easy it will be though as there are only a few at my local hospital.

I'll certainly look into this but I'm not sure if the NHS would help me, I've only ever been offered CBT which I've had several times, sadly I can not afford private therapy.

I am not diagnosed with ADHD but I am on a waiting list for an assessment.

I've tried sertraline and fluoxetine but they made my gut issues worse.
I've been offered Escitalopram but am apprehensive to try in case they make my issues worse.
I've never been offered venlafaxine, I may ask the GP about those.

@MellowAfternoon the NHS is useless in this regard (talking about medical gaslighting). It's a long road to self discovery. Only you will know if you have been able to live according to or against your values and authentic self.

What have you been offered these for?

These two are the only thyroid tests I've had. I wasn't asked to fast at all.

The gut issues.

I agree with this. We can repress a lot, it’s amazing what we hold in the unconscious.

I don't see Lyme's disease mentioned...my friend had similar and it turned out she was coeliac and also had Lyme's diseases.

It took a while but she is a lot better now.
Hope you get to the bottom of it.

I was also going to suggest EDS. If you want to explore it further this book is excellent, and despite having being diagnosed for years, gave me a wealth of easy to digest information: www.redcliffhousepublications.co.uk/product-page/understanding-hypermobile-ehlers-danlos-syndrome-hypermobility-spectrum-disord

Good luck with getting to a diagnosis, and so sorry you're suffering.

I never post on here but saw your post and wanted to share my story.
I experienced several of those symptoms for over 20 years, starting in puberty, and almost miraculously managed to get them under control just as my daughter began showing similar issues. I was diagnosed with hypermobility syndrome, severe joint pain with frequent dislocations, pernicious anaemia, and a few other conditions. I had always dealt with TMJ and low iron as well, but thankfully, I have had no significant symptoms for the past few years.
My daughter could barely eat and seemed allergic to nearly everything—including eggs, wheat, rice, chicken, and milk. She even developed a reaction to sunlight. Doctors weren’t much help; after spending £2,000 on private tests, they suspected lupus, but I realised her problems stemmed from severe inflammation. Because it took years for these conditions to develop, reversing them also requires consistent effort over time.
For years, I had tried to exercise but would always feel awful and in severe pain for days afterwards—something I now recognise was linked to inflammation. My pain threshold was so high that I had both my children without any pain relief, and with my daughter showing the same symptoms, I was desperate for her to avoid that.
While my primary issue was acid reflux, her gut problems were far more serious. After doing the baking soda test, I discovered she had almost no stomach acid—meaning the antacids she’d been taking were causing more harm, and her food was lying undigested in her gut, triggering all her allergies.
She started taking Betaine HCl, which helped her properly digest her food, and also took probiotics to restore her gut health. Her eczema disappeared, and she could eat all the foods she’d previously been allergic to.
This made sense to me because if my gut wasn’t processing food properly, I wouldn’t have been getting the nutrients I needed, which led to so many illnesses. My blood tests always seemed almost normal, even though I felt absolutely awful all the time and never truly rested.
My husband has type 1 diabetes, so I understand a lot about food, but I generally didn’t eat much and didn’t think it would have a significant impact. I frequently ate carbs first, so I changed this habit to keep my blood sugar stable and soon felt much better.
Intermittent fasting also significantly reduced my inflammation, prompting me to be more careful with my diet—avoiding carbs in the morning in favour of Greek yoghurt, eating salads or protein before my carbs, and reverting to intermittent fasting if I noticed any symptoms.
This transformation has allowed me to run 5 km and exercise daily without any pain or dislocations. Even if I occasionally overdo it on carbs—a major trigger for me—I can quickly adjust and get back on track. The bigger concern is that if gut issues aren’t addressed early, they can progress to more serious conditions like Crohn’s disease.
I truly wish you the best and hope you find the underlying causes of your health issues. Inflammation can cause so many problems, especially if the body has been inflamed for many years.

Has anyone mentioned / suggested MCAS?