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?

I would love to have a full health check but sadly can not afford it.

@MellowAfternoon If there's no effort to manage the endo, I would be looking into this first before worrying about MCAS, more extreme diets, mould, or living off nothing but water (FFS) because you already have a definitive diagnosis of something which is known to cause a lot of your symptoms. Your age will unfortunately definitely count against you because women who are trying to get pregnant are the priority and there is also a belief that a lot of endo cases resolve with menopause when oestrogen levels naturally drop. This does seem to be the case for some women but not for all of us.

I've had Zoladex in the past and it's fairly routine to try it with women with severe disease, usually for 6 months. It temporarily switches off the ovaries to tank your oestrogen levels, which should then quieten the endo deposits and reduce pain/inflammation. The gynae was right in that the side effects are unpleasant, but sometimes that can be the lesser of two evils if the endo symptoms are bad enough. I was really frightened before I went on it first time round, because when they start talking about plunging hormone levels and menopause, it's very scary, but it's less drastic and less risky than surgery. There also may be better pain management options if what you've got at the moment isn't working. I would be asking for another appointment with the endo clinic to see what can be done to help while you wait for surgery as I don't think a GP can prescribe zoladex, it has to be a consultant (but it can be managed by the GP once a consultant has said you can have it).

I'm assuming other hormone management options (mirena, the pill) weren't suitable or didn't work.

I have a lot of these issues too. In fact reading through the list the only one I don’t have is thinning hair. I haven’t read all the replies so will when I get chance as I’m very interested to read what others think.
For me, I’ve kind of come to terms with the fact that I’m physically and genetically weak unfortunately. My mother and daughter have a lot of these too.
I’m autistic and I think the anxiety that I suffer because of that has caused a lot of these problems, especially the migraines, gut issues, tmj and tinnitus.
I have suspected endometriosis and have been anemic most of my life. I also have b12 deficiency.
I have suspected sleep apnea which might explain the tiredness too (been referred for tests).
Like you I am healthy as in I eat well, exercise (as much I can cope with because I am breathless and lacking in energy) and am slim. But I guess when you have weak genes no amount of eating well or keeping fit will cure you.
The things that seem to help the most is trying to lead a calm life without too many things in it that make me feel stressed/overwhelmed/sensory overloaded and taking a strong multi vitamin has helped a little too, as well as taking my iron vitamins and having regular b12 injections.

Sounds like you’d score enough on the Beighton test for EDS. I have EDS and MCAS, MCAS is often a comorbidity of EDS. I know quite a few people with both.

@MellowAfternoon I've got a DD a bit older than yours, I am paying privately for her to have scans to look for endo. NHS GP was useless and sent us for a completely inappropriate ultrasound at the local hospital, so in the end I asked my endo specialist for advice and he told me who we should see. But it's very, very expensive :(

As for why: if she has it, she needs to know now, not in fifteen years when she can't work because the pain has taken over her life and she can't get pregnant and needs a bowel resection and has a kidney that's about to fail because it was left untreated for too long. That's sodding well why.

I honestly think a lot of GP's are still stuck on the idea that we're all a bit hysterical and need to get a grip and that's the real problem.

Also is your gynae a normal gynae or are they working at an endometriosis specialist hospital?

my McTimmoney practitioner has endo and EDS, (as does my Dd). She reckons endo and eds also go hand in hand for many people. She really emphasised to me (for Dd) about not going to see a regular gynaecologist at your local hospital. That a lot of the time they won’t even recognise the endo let alone remove it effectively. It should be excised not lasered. When she had endo surgery at a specialist hospital there was also a colorectal surgeon there to remove it from the bowel. You won’t get that a standard hospital.

also a laparoscopy is the gold standard to find it. Nice guidelines say even if it’s not picked up on a scan if symptoms persist then a laparoscopy should be offered. I had to push for this for Dd.

I'm another who has many of your symptoms and was diagnosed as being hypermobile when I was 50. Peri definitely exacerbated my problems, and led me to seeking private medical help which is when I got the diagnosis. Connective tissue disorders affect so much in our body - so much more than gps and a lot of medical professionals know/will accept. I think knowing what was the root of my issues has helped me accept them, as there's no cure for a lot of them.
I also thought I was gluten intolerant, but after paying for an intolerance test (was less than £50, sending hair strands away) was amazed at some of the things I was intolerant to. Cutting out those things have sorted out the IBS type symptoms, and also some tiredness and headaches as I now realise these were/are much worse after eating foods I'm intolerant to.
As you already know you're hypermobile, I'd suggest a food intolerance test if you haven't done one already.

I think some of symptoms will improve when your periods finally stop so hang on in there. Sounds like the endo, iron and bowel issues are linked to that. As the hormones ‘relax’ the womb for a period they also relax the bowel and this was insane for me during late peri. It calmed down loads when my periods finally stopped.

hrt is a godsend in many ways but it did prolong my periods so maybe skip that for a while or try topical hrt only

Thank you Angrymum22 one of my biggest regrets is not opting for the Mirena. I ummed and ahhed for a year or so but then fell down a rabbit hole reading about all the horror stories so opted for the ablation which was a huge mistake. Sadly because of the scar tissue they can't insert a mirena. I've since spoken to endless women who love their mirena especially endo sufferers. Had I been diagnosed earlier I may have been able to have made informed choices based on my known condition. I am still angry about that.
Sorry you have been through the mill yourself but encouraging to hear it can get better 🤞

Thanks Birdiewordie I did mention on my op that I have tested positive for SIBO (sorry, it was a long op lol). I tried the rifaximin but made me worse. My gastro says to ignore the sibo as, in her opinion, it's not researched enough atm.
I don't think I have pcos as I've had many us scans and the MRI and only have the occasional ovarian cyst.

Creating havoc. I have had many ultrasounds and only a thickened uterine lining and endless polyps showed up. My last US scan was Oct 2023 which showed nothing. I pleaded with the gynae for a MRI which I had two months later and it detected the adenomyosis and endometriosis. I was surprised the us scan didn't even pick up the adenomyosis. Definitely ask for a MRI. And if I could go back I would 100% have opted for the Mirena. Good luck.

MymateDave folate is 4.4 and b12 is 379. GP says both are within range?

YnyshirGal I often wondered if I had coeliac disease but I've had two blood tests and a biopsies taken via a gastroscope. I was eating gluten each time and had been for months prior. Surprised though because I do feel much worse when I eat wheat/gluten (went mad at Christmas which was a big mistake), gastro and dietitians all day it's the fructans in the wheat causing my issues?
How low were your folate levels? Mine is currently 4.4 but was 13 in 2011. No one has explained to me why it would fall that low or what causes it to do so. GP has stared it's all 'normal'. I certainly don't feel normal 😞

Are you hyper mobile by any chance, my daughter has Elhers danlos syndrome. It affects everywhere in her body and is very painful. The photo if your skin re taking the plaster off reminds me of her skin. It's very hard to diagnose and has loads of different symptoms. I hope you find out what the problem is, it sounds dreadful how it's affecting you x

Nogodsnomasters I (was) gf for the last 6 months but fell off the wagon at Christmas. I still wasn't feeling brilliant being gf but definitely better than I have felt since Christmas, gluten/wheat does not agree with me which saddens me immensely as I adore bread and despise gf bread.

Vikingnorthutsiresouthutsire I had a full colonoscopy 18 months ago they took biopsies for microscopic colitis which returned as negative.
I had to give up work 2 months ago as I'm struggling so much but really need to return to working and that in itself is causing me stress which doesn't help matters!

Thank you GoneTooFarAgain I really need to do this. I do follow a fairly simple diet but maybe I need to look even further.

MindTheAbyss the more I look into this the more interested I am. Thank you. I will research more on MCAS.

Plantymcplantface funny you mention her as I was watching a YT clip only last night all about her health issues.

MCAS or histamine intolerance, often goes with EDS. Have you looked at mastcell360 website?

@MellowAfternoon i think a folate of 4.4 is low. My gp put me on ferrous sulphate when my folate was 9 and I felt fine. I just googled and some places say 3.5 and above is normal and other places say 4.5 is normal. But yours is certainly on the lower side of normal even if normal.

i know you said you were clear for coeliac…..I assume you were still eating gluten when you had a blood test? If you weren’t then the blood test wouldn’t be accurate. Also it is possible to have a normal blood test but be positive for coeliac on endoscopy and biopsy. I’m in some coeliac fb groups as Dd is coeliac (as well as the eds and endo) and I see a few people who have had a normal blood test but a subsequent diagnosis.

edited, ignore the last bit…..I see you’ve just talked about your coeliac tests.

Sadly this does seem the case. My DS's 21 year old gf has suspected endo and I can't believe how quickly they are dealing with her (at the same hospital). Obviously I would like to see her treated as soon as possible but I do get the impression I've been placed on the back burner due to my age.
I will definitely contact the gynae department again, as you say the GP can't prescribe the Zoladex unfortunately. I have asked about pain relief for the post ablation pain I get during my period but have to be so careful what I take orally due to my super sensitive digestive system as so much upsets me. I can't have a mirena due to scar tissue on my cervix. I could ask about the mini pill? Not sure if they prescribe that to over 50's?

Having a seemingly normal B12 level does not rule out Pernicious Anaemia. There can still be a functional deficiency. Google Pernicious Anaemia with normal B12 and you can probably find a case study explaining it. A lot of the symptoms fit yours.

OP I know you don't want to hear it, but I would look at my upbringing. Many people who say they had a good childhood are totally unaware that their bodies carry trauma. The fact that you categorically excluded this option when a poster brought it up is a bit of a red flag. Like you shut it down straight away, not even willing to go there.

I had many of your symptoms for many years. Almost all are gone after years of therapy or only flare up if I have a bit of an episode emotionally.

I have a friend like yours: always in pain, always issues, the doctors never find anything. The only option she isn't ready to explore is her psyche.

It's up to you.

They do prescribe the mini pill at our age (I'm 52 this year too and also have endo and adenomyosis). They gave me desogestrel though I had to come off it as I had so many side effects but one thing it did for sure was calm down the endo/adenomyosis. (HRT made it worse and made my hair loss worse too - incidentally I have similar hair pattern to you but my hair loss has slowed since I came off HRT).

Are you taking vitamins under your tongue? I was told my folate was low when it was higher than yours but I take it via a spray as I also have stomach issues and I'm not convinced I was absorbing vitamins via my stomach. Might be worth a try if you're taking them as pills?

Being a woman is miserable with all those conditions. I have begged for a hysterectomy for years and never got it and I've given up now - even if they did refer me, the waiting list is so long! I feel your pain!

You sound quite similar to me in a lot of ways.
I also have an awful digestive system ranging from GORD to excessive rumbling and bad wind, but nothing worse than h pylori has been found after extensive testing. I am also having a manometry and ph study this week, paid for privately as GPs say NHS waiting lists are too long and I gave up with my previous GI.
I have had uterine polyps and fibroids but only had 2 polypectomies - and I am now in menopause so I am hoping that is the end of those issues. I have had other gynae problems over the years that were hormone related.
I have had Raynaud's all my life but it was partlicularly bad in my late 30s and 40s, it seems to have eased off the past couple of years. I've never thought it could be related to anything else as it's so common. I've got a couple of other health issues which I think are unrelated so sometimes it is just 'bad luck'.
Some of what you put in bold are symptoms of silent reflux so are probably not 'separate issues' - namely:
sore raspy throat
sore tongue
tinnitus
TMJ
Blocked nose/post nasal drip - a classic silent reflux symptom.
I would look at the Acid Watcher Diet or Dropping Acid diet for information on the symptoms of respiratory/silent reflux and how to relive it. I have been on the Acid Watcher Diet and it does help. Some people get complete symptom remission but I'm not one of them - although they are no way as bad as they were and I have to be very careful with diet and lifestyle now. If you google Dr Jamie Kaufman she has a web page with a lot of information (imho her info is better, but Dr Aviv from Acid Watcher's diet is easier to manage).
My reflux massively flared up after covid which coincided with peri-menopause and a really stressful time with my DS's mental health.
I do hope you get some relief soon as gastric issues are miserable as hell. My life has really changed in the past two years - always have to think about what I'm going to eat/when and not eating fibrous food if I'm going out that evening or I'll be really uncomfortable holding in the wind.

Another point re the Raynaud's - you need to find out through blood tests - if it's secondary or primary Raynaud's. Primary is just - you have it on its own, so not a big deal. If it's secondary then that's usually a marker of a rheumatoid issue. When I went to the GP in my late 30s re my worsening Raynaud's she referred me to rheumatology and then did some tests and also hand x-rays as I often (and still do) get some weird shooting type pains in my most affected fingers. Nothing untoward was found, but nerve issues are a common 'side symptom' of Raynaud's. I also recommend the sruk website - v helpful info on there on all sorts of Raynaud's issues.

There are so many sad tales on here but also so much incredible information, advice and experience. It’s also indicative of how brilliant the NHS is regarding easy to diagnose issues, but stumbles where symptoms don’t fall neatly into categories.
I am sorry you haven’t got money for private but I was wondering, especially as you are off work, if it was worth really researching some of the amazing posts on here and also names of doctors/ surgeons who are specialist in these areas. Then try and put a budget together of what treatment (s) could cost … and then see if you can raise money or sell anything to put towards the treatment. You could even try a GoFundme or approach a charity? Maybe also if you go to GP with a well thought through potential diagnosis and a doctor who is specialist in that area and you can list where he has been successful - GP may also try and get you on a wait list to see that specific person. I’m sorry I can’t be more helpful but hope you find some ideas from the thread and you manage to improve your situation in 2025 x

I'd join some of those underactive thyroid pages, find out who the current good private practising doctors are (not nhs endocrinologists) and go and see one of those to see what they think.
I had a similar long and sorry list of symptoms and the digestive issues cleared up once I was medicated and I could eat anything I wanted again as it was all working as it should.

Low ferritin, sub optimal folate and under-treated B12 deficiency. Join an online B12 deficiency group (FB) & learn, learn learn

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.
I wonder if the reason I am so knackered all the time even though I sleep for 7-8 hours per night is because I dream very heavily and always remember my dreams (can recall dreams from years ago).
My mum and maternal grandparents had lots of issues too, I wonder if I too have weak genes. My DH family are as strong as oxes physically and mentally.

FeegleFrenzy I may start looking into this more.

Cheeky snake isn't it so frustrating they still won't listen to us despite so much media coverage on endometriosis.
DD had an us a couple of months ago and it came back normal so GP is ok with this but that means nothing to me, I had a clear US in October 2023, two months later my MRI came back showing endometriosis and adenomyosis.
I saw a wonderful private endo gynae a year ago, he told me he has many 15-20 year old patients who have been completely dismissed by their GPs even told they can't possibly have endometriosis at that age when laps discover they are already in stage 4 of the condition.
I too don't want my DD going through the same journey as me. Building her life around periods, spending years trying to get pregnant and hating her body because it causes so many issues. I hope your DD gets the treatment she needs, good luck.

FreegleFrenzy he's an endo specialist, our local hospital is an endometriosis centre. He will excise via robotic assisted laparoscopy. He's told me if any bowl endo is found then he will abandon the procedure and I will need to have it again at a later date with a colorectal surgeon on hand which is a bit frustrating tbh.
It's interesting to hear endo and eds could be connected.

Newgirls I really hope so. I keep reading menopausal women saying they miss their periods, I know I won't, they have been the bane of my life since I was 12 years old. I hate them.

1973Louise yes, I think I am. I'm going to look into this further. Thank you.

Thanks Apileogballyhoo I'll take a look.

FreegleFrenzy I'll look into the folate levels, thanks

Twatalert I didn't shut it down when someone suggested it because genuinely don't believe I had a bad childhood, in fact I often wish I could go back it was that lovely. My parents still together in the same house my sister and I grew up in and we both live near my parents. I have had the same best friend since we were 5, she had a very up and down childhood with a cheating father and often tells me she wished she lived at mine when we were young.
I know that all sounds saccharine sweet but it's how it was. What more can I say? If there was anything bad going on then I've (and my sister) have hidden it very deeply because can't recall a thing. And DH come to think of it as we've been together since we were 16, surely he'd have picked up on something?
So you are saying endo is caused by family trauma? Weird because my gynae says something you are born with and hormones activate it.
Bloody hell, you've got my worried now.

"TheCheeseisCallingMe* sorry you have similar issues, being a woman is totally miserable, I agree. I should try the mini pill to see if it helps I suppose.
I only take vitamin d smatm and that's a small tablet. I need to look into the folate.

Boredofmyguts, oh, I need your username lol! Sorry you suffer too, just horrible isn't it?
I do wonder if the throat and nasal issues are stomach related. I a copy the Acid Watchers book shoved in a drawer somewhere (along with the other dozens of self help gut books I own!), I will dig that out and go through it. I will also look up Dr Kaufman too.
I wonder if upper gut issues can contribute to lower gut problems?
I get the shout pains through my fingers too, just comes out of nowhere. Thank you.

Lilactimes thank you. I always say the NHS are fantastic for acute issues, not so much for chronic ones. My mum was diagnosed with breast cancer this year and her treatment has been fantastic.

CrotchetyQuaver thank you, I will do that.

Zebotah I think that will be my winter evening project from tonight onwards.

@MellowAfternoon - I use this name for when I'm on the health board as I don't want to be identified from other posts! Definitely get the acid watcher book out the drawer as even if you don't or can't follow the diet to the letter, the background info makes so much sense. The whole gut can be out of whack - I've never had an amazing digestive system and used to get really bad trapped wind (which I don't get so much now), but I'd go back to that over the reflux any day! I would say it's more lower gut issues contributing to upper gut issues. The shooting pain thing is awful with the Raynaud's - if I bang my little finger the pain is horrific - very odd, but it's def a symptom of the Rays.