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. I've got DIE of the bowel and I've got bowel issues similar to what you describe @MellowAfternoon

It's caused by the deep lesions in the bowel. You've said you had an MRI where they found endo/adeno - do you know where the lesions were, and what sort of size? And have you been referred to an endo specialist (they have a team at UCLH). Following on from that, I saw you said you're under neurogastro at UCLH - is that Dr Zarate Lopez?

The thinning hair/burning tongue could be menopause related, as could the skin issues.

Fatigue is a symptom of severe endo/adeno

Cold all the time, Raynaud's - yep, got both of these.

Thank you
I believe I have been hypermobile since birth as are many of my family members. I was born with double hip dysplasia and am very bendy but not in a good way, for example, I can bend my thumb back onto my wrist, my knees bend back and many if my joints are very clicky. My 19 year old son has regular knee subluxation. GP tells me told everyone is a little bendy and left it at that!
I should have added that I had a pill camera endoscopy last year to check my small intestine, not sure it checked gut transit though?
I have been interested in MCAS for a while. I react very strongly to perfumes and chemicals to the point that I can not wear perfumes at all or have air fresheners near me. GP was not interested at all when I mentioned this.
I need to look into this a little further.

Lupus has never been suggest tbh.
I do wonder if I have eds though.

The gut issues, migraine, tinnitus and TMJ could well be stress/anxiety related

No wonder the OP is stressed out and has reached the end of her tether, having felt so shit for so many years. Honestly, the times I've been fobbed off like that by my GP is ridiculous. Being ill for decades does have a tendency to make you feel miserable eventually.

This, definitely.
Poster beat me to it. 🍀

OP, you poor thing. I would have guessed endometriosis. Also food allergy seems like a strong possibility but you seem onto of that. The other thing is MAST cell disorder of some sort - it could cause lots of these issues, certainly coldness, gastro and skin issues so might be a good shout.

A long shot is Lyme disease, symptoms can be random. This is unlikely but if you do country walks might be worth considering. Look at mast first tho.

You say you suffer from migraine and while your gyane problems are ovously separate. And I can see how they could effect your gut.

You also mentioned, sinuses problems, floaters in your eyes, TMJ, being tired all the time and feeling cold. As well as stomach issues.

These can all be migraine related, the floaters could be silent migraine. It's very common for migraine suffers to have several different types of migraine. Often pain in the jaw or sinuses is actually migraine, you don't always get it in your head.

I would also look at your vitamin D levels. Have they been tested at all? If on the low side this could be making you feel tired. They need to be in the 80's or higher to feel normal.

I do think it is multiple issues but they have ruled out anything major as you've had scans and investigations. So looking at what's left is the best step.

I feel how you feel about the doctors though, I do feel they need to look at people as a whole sometimes as things can be related. This trying to fix one problem at a time doesn't always work when you multiple things going on.

Funnily enough I read an article about burning tongue and Amitriptyline has been found to help immensely with that. It’s only a relief of one symptom but because amitriptyline is used for nerve pain/discomfort it does make me wonder if you need to push to be reviewed by a rheumatologist and/or endocrinologist for for investigation of autoimmune disorders.

GPs are out of their depth on EDS. Many rheumatologists are also. With EDS, you also tend to have greater chance of autoimmune issues. I only known this because on a few health groups I'm part of, we all have similar issues and I feel EDS (a genetic defect of collagen) is the root cause of all of it.

In your position I'd seek out a private rheumatologist if you can afford to. My own NHS rheumatologist is supportive with treatment for my autoimmune conditions but getting diagnosed and getting them to listen was very stressful. They wouldn't basically. They dismissed EDS even though I can contort my body into impossible positions no one else can and have multiple other issues. I was diagnosed by a leading EDS person. I lost all my savings getting answers. People find it hard to believe that you can genuinely have lots of serious health issue yet be gaslit and forced to ' doctor shop'. People will say you must be anxious. Ignore them. No one understands sadly.

Many autoimmune conditions don't show up in the blood ( no antibodies). I have 3 awful AI conditions, blood tests normal! They were and are now very obvious in other ways. I have Sjogrens ( like lupus). The burning tongue pain is awful. It's a common issue in Sjogrens, in lupus and mast cell activation.

No doctor will listen to you regarding MCAD as there's no clear reliable test. I'm not advising you here but what we tend to do is avoid high histamine food and take non drowsy antihistamine ( fexofenadine) daily.

Like others, some autoimmune condition sounds possible. Have you been specifically tested for Pernicious Anaemia? That fits a lot of your symptoms. And of course, once you have one autoimmune condition you can be more likely to suffer others.

It sounds like you need a new GP surgery for a start.

First thing that struck me was- wheat allergy and low iron /vitamin D.

Follow gluten free diet and obtain a Better You oral spray for iron

I've had a look again at your original post and wanted to add - HRT making period related pain worse could well be linked to endo/adeno. Women with endo have to be careful with HRT as we need higher doses of progesterone than are normally prescribed. GP's are in my experience totally out of their depth here.

There are a LOT of things on your list that could well link to endo. I'm assuming because you are on a waiting list for a lap that you don't know at the moment where you are with the disease and aren't having any treatment for it.

Better management of the endo may well help with a lot of the issues.

Thank you.
Here is a copy of my MRI results, it doesn't mention any bowel endo but obviously they won't know for sure until the laparoscopy. I'm pretty certain it's all connected though as my gynae and gut issues all occured at roughly the same time, decades ago.
I'm not London, all of my neuro-gastro appointments are done via video call, I'm under Dr Asma Fikree. Luckily my local hospital is an endometriosis specialist centre although I'm not keen on my gynae, I find him very dismissive.
Do you think your Raynaud's is connected to your other issues?

I would pay for a private consultation as you will get nowhere with the NHS with all of your health problems.

MCAS

Unfortunately your GP is likely going to dismiss that.
But a basic way to check if it could be that is to take an anti histamine
(Like ceterizine ) 2x a day and see how your symptoms do.

@MellowAfternoon I have adhesions so severe that I had been regularly hospitalised. You can't see it on an MRI. The gastro is so knowledgeable and knows my situation well enough to know. I understand endemitriosis can cause lots of ' stickiness ' and adhesions and an MRI doesn't show it.

Raynaud's is incredibly common for people with EDS and/or autoimmune conditions.

Also have you had any test results autoimmune disease (plenty of pointers in your posts for that)L

And I’d look at autonomic disorders too

If you're also hypermobile I would definitely look into EDS. With some other things going on on top.

It sounds like EDS/MCAS to me - we are investigating this for a family member who has previously been diagnosed as coeliac and with crohns (Autoimmune conditions love company!) but just to add that if you have been following a gluten free diet prior to being tested for coeliac then the test can come back negative even if you do have coeliac.

Usually it's recommended that you do a six week gluten challenge (eat gluten daily) prior to being tested.

Has anyone suggested you have a Salicylate intolerance? Alongside menopause, gynae issues- I had fibroids - added together, I had a number of your issues. Worth adding Salicylate issue to the checklist perhaps?

This is a guarantee as horrible and distressing as it is to say.

Someone mentioned autonomic problems. I'm not trying to outdo anyone ( 😆) but yes that is also incredibly common in EDS and I have this too.

I take medications for my various autonomic problems. They were tested and diagnosed....you guessed it, privately.

The NHS won't help here. Once/if diagnosed they will / should help with any medication/ taking on prescription recommendations from a private consultant.

Like others have said this could be EDS or hypermobility. When many seemingly different systems and symptoms are involved it can point to EDS. I had to go private to get assessed and diagnosed. Unfortunately there isn’t much help and support even with a diagnosis.

MCAS is common with EDS and to me it sounds like you have that too.

I’ve recently delved into the RCCX theory which is interesting. At this stage it’s a theory but it explains my experience and symptoms so well. It’s a theory as to why there is a constellation of symptoms and disorders.

@MellowAfternoon The nodule in the pouch of douglas means that you've got a growth of endo pressing against the back of your rectum (basically, this is what causes the burning/knife up the bum pain) in the space between the base of the uterus at the back and the bowel. Having it there means it's classed as severe. Non-invasive means it isn't growing into the wall of the bowel itself, or it wasn't at the time. They've then found more nodules on one of the ligaments that holds up the uterus. Endo in the POD irritates the bowel and that causes the horrible diarrhoea (for me, anyway). I've got mine fairly well under control at the moment with nortriptyline and diet and relaxation techniques (although I saw you said the side effects of the TCA were difficult for you). But managing this is just constant daily work and it's exhausting. I am so fed up of it. I've had a hysterectomy, fallopian tubes, cervix and ovaries are all gone, and I've had endo excised from my bowel, bladder, ureter, pelvic sidewall, pelvic ligaments and rectum/POD. At that time the nodule in my POD was about the size of a golf ball. That nodule came back about 4 years after the op, and at the last MRI it was about the size of a 50p and had grown 10mm into the bowel wall, with another lesion about 1cm in diameter next door to it. I've been told it's very risky to try and remove it. I had adenomyosis as well - the treatment for this is a hysterectomy.

It really is the shittest disease. I've also got TMJ and tinnitus, BTW, which I think is caused because pelvic pain causes a lot of muscle pain/tightness because you're constantly clenched and it makes it so difficult to relax. Which then also worsens anxiety. But then of course we're effing anxious.

My MRI reports say adhesions could be seen as well as a lot of scar tissue from my endo surgeries, so they can be seen on MRI (but obviously a lot of this is dependent on the skill of the person looking at the scans).

It might be worth studying authophagy? Basically water fasting to heal yourself