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?

FWIW I don't know if the raynauds is connected, I've suffered with it since my teens, I also have problems with dizziness and fainting, but it wouldn't surprise me. Endo is thought of as a gynaecological disease because the female reproductive organs are usually the first place it attacks, but current research seems to show that it's a systemic inflammatory condition.

Sorry to read all this. I fear no Gp, the failing nhs, is in no fit state to help you.

My old boss went privately for a health check up where they tested just about everything, blood taken and tested extensively. Might this be a better option for you? Someone who actually cares, who will read the list you've posted here and consider all options?

Then use that info to chase it up on nhs with Gp?

I suffered with endometriosis, secondary PCOs due to pituitary micro tumour and I have a latex allergy.
I think that the symptoms you’ve suffered are primarily related to the endometriosis. It can make you more prone to autoimmune problems such as allergy or reactions to drugs.
Firstly my chronic anaemia was solved with a Mirena coil which also help with menopause symptoms.
You are due to have a laparoscopy which will pick up PCOs aswell as endo.
Endo can cause awful gastro problems if you have endo lesions on the bowel and a Quick Look at the foods that trigger your problem suggest that this may be the case. Certain food adatives and any foods that contain hormones ( chicken used to because they speed up maturing process by feeding them hormones but British chicken no longer contains hormones). Orange food colouring was the worst, processed orange juice used to give me severe stomach cramps.
For the last 20yrs with the help of Mirena I’ve been much better. I did have a lot of surgery before DS was born though, to clear the endo, so I could get pregnant.

Hopefully you will get some answers but if it’s any consolation things do improve post menopause. Although I have a lot of scarring and adhesions internally from the endometriosis so have some issues. My bladder is badly scarred so I suffer with chronic retention and nerve damage.

Hey that's a lot of symptoms, but I'm curious about if your gut issues may be SIBO, have a look online about the symptoms. Also, hair thinning maybe PCOS if that hasn't been ruled out already? Dr. Berg is fantastic person to check out on SIBO and different deficiencies. For some reason in the UK they say normal for vitamins on blood test is fine but actually you need to be at optimal levels not just baseline, for example I had trouble with vit D deficiency, I managed to get it up but the optimal levels should be 100+ not the baseline they recommend. But again, Dr Berg has so much information he's definitely worth checking out

The reaction to the plaster makes you wonder if it could be some kind of immune or auto immune issue impacted by hormones

Might also be worth a a private gp appointment just to get some new ideas and talk to someone who cares about finding a resolution. Our gps are just so hard to talk to. Like you say one problem one appointment and they are brusque, don’t listen and try and get you out of the door as soon as possible

I could have written your post. I have pretty much all of the same symptoms bar the raynauds and my hair isn't quite as thin. I'm also getting nowhere with the NHS. They want me to try sertraline. I do have a pelvic ultrasound booked but I'm doubtful as to what it will show. My sister has endo so I suspect this may be an issue. I'm going to request an MRI next time I see the gp. I'm also considering a coil. So I have no advice I'm afraid, just empathy and solidarity.

What were your b12 & folate levels? My hair goes like that and I have stomach issues when I'm deficient in both of these x

I could have written your OP symptom wise and have spent a lot of years trying to get to the bottom of it. I was diagnosed with “Hypermobility Syndrome” aged 19 - this has now been reclassified to Hypermobile EDS (hEDS) which is something a rheumatologist can diagnose.

On top of that, at age 36 I was also finally diagnosed with Coeliac Disease, which was causing extremely low folate levels which caused a lot of the non-bowel related symptoms. I had been cleared more than once on tests but that’s because I wasn’t eating enough gluten in advance. I made myself ill eating gluten for 6 months before the retest and then it was confirmed. I also now have a secondary lactose intolerance along with a histamine intolerance which are common once diagnosed Coeliac.

Managing foods around all these is tricky at first, but then once I got my head around it, the change in my quality of life was astounding.

I know it’s hard when you feel like you’re getting nowhere with the Dr - I used to say if I was a horse with all these symptoms they’d just shoot me - I can only say keep pushing for an answer. For me, finally being heard and having an explanation so I can manage the cause of the symptoms has been nothing short of life changing.

Agreed OP this sounds really rubbish. I have hypothyroidism and have done a lot of research. Again I’m not medically trained and everyone is different but your symptoms certainly dont fit into typical symptoms of the condition, nor anything I experienced. I think sometimes people think it could be this because of the exhaustion but while it might be suboptimal I’m not sure it sounds like this as the main problem. And as it a metabolic condition won’t account for a oOt of the symptoms you are having.

Someone else mentioned mould. This is interesting. My mum had a ridiculous cough for ten years. They tried and thought it was everything - acid reflux, asthma, lung condition etc. She tried everything and was eventually referred to a consultant who after having done the lung scan, MRI etc discovered it was a low grade fungal infection on her lungs. Have her thr right antibiotics and she has been fine since. I mention this as I think you may need or be referred to a specialist as your symptoms don’t describe any obvious issue. Good luck.

This all sounds horrible and likely that the endometriosis is causing a lot of it. I can't help you with your main issues but I can tell you that from the photo of your skin where you took the plaster off that you have an allergy to plasters. You should use sensitive plasters and mention it whenever you have a procedure done at hospital. Also use ecover zero washing powder because it sounds like you have skin allergies in general and this is the only one that doesn't have perfume in. Good luck I hope you get some answers soon.

I do think that I get silent migraines also. I will often experience a weird blob in my vision which is bright when I blink against the sky or a TV screen, it's like a much smaller version of my full blown aura.

I take vitamin d and have done so for a while. My last check was in August and my results were 83, that's the highest it's ever been.

It is very frustrating that GPs often don't look at the full picture. If I went by my doctor's recommendation I'd be on a full cocktail of drugs to control the symptoms but that doesn't get to the root cause of my issues though. Even if they aren't well treated at least id know what I was dealing with and that would save my a lot of anguish over my health.

Also, I have had years of being allergic to random things - plasters included - and at my worst my skin felt like it was bruised all over, even wearing clothes hurt.

This was explained that my body was so busy fighting everything and my nervous system was so overloaded that I had peripheral neuropathy.

I haven’t had this once since I changed my lifestyle to manage my diagnoses. So there is hope out there for even the most awful symptoms x

Just to say as a lifelong migraine sufferer my migraines 'disappeared' at peri menopause, very happy about that, however I have a suspicion that they didnt disappear they have just changed form into floaters, dizziness, stomach ache pain in sinuses (not helped by actual problems in my sinuses too)

My friend had a b12 deficiency and I genuinely expected my results to come back the same as we both have similar issues yet my b12 is within normal range. Currently 379.

ohyesido I follow a wheat/gluten free diet and had iron infusions back in 2022 which has levelled my iron.

I agree with pp's that this does sound very autoimmune related. I know you say you've been tested for coeliacs but have you ever tried going GF before? A minimum of 3 months to see slight improvements, up to a year for gut to heal. Of course the gynae issues could also be affecting the gut but so many of the symptoms you've listed are coeliac symptoms. It's worth giving it a try if you haven't already.

Mould doesn't affect everyone equally. For starters, women tend to have more mould-related issues than men, because testosterone is somewhat protective.
And, some people's bodies are better at dealing with mould than others'.

Oh, and another thing to mention: if you have the Dio2 gene mutation, your thyroid bloods will look normal, but the hormone function won't be. It affects hormone conversion. You can test for it here:here:here:here:here:here:here:here:
Ha ha oops, don't know what happened to that link !

Sorry you're having such a hard time, OP.

Ask to be checked for microscopic colitis. A friend had your symptoms and was diagnosed with this after years of problems. I sympathise, I have BAM and also waited years for a diagnosis by which time I'd been retired on ill health grounds.

Sorry you're suffering so much. With specifically your gut issues, have you paid attention to preservatives in your diet? My stomach was horrendous and I literally couldn't eat anything without severe diarrhoea - I tried FODMAP, tried cutting out dairy, tried cutting out gluten, etc etc. I also had migraines and fatigue along with it.

It turned out I'm very intolerant to a few specific preservatives, including calcium propionate which is in most packaged breads, sulphites which are used to dry fruit, guar gums which are used to give shine. By switching back to essentially a simple, whole foods diet it mostly eliminated my gut issues.

It sounds like you've got a few different things going on and things are maybe a bit more complicated for you, but worth investigating in case it can give you a bit of relief.

Another vote for MCAS, which often occurs alongside EDS. The dermatographia from the plaster on your arm, the constant digestive issues, the pelvic pain (horrendous for me and I had exploratory surgery for endo), the post-nasal drip and sore throat, all fit. The NHS doesn’t recognise it and you’ll likely have to pay to see a doctor knowledgeable about it, but there’s a lot you can try yourself with antihistamines and identifying triggers. https://sa1s3.patientpop.com/assets/docs/295884.pdf

CheekySnake No sadly I am not being treated for anything. My original gynae just left me with advise to take pain killers for the failed ablation pain and the endo gynae has left me on the waiting list for a lap, he wasn't even keen to do this as I am sure he hopes I will soon go into menopause even though from everything I read online many endo sufferers still have issues post-menopuase although there seems to be little research into endo and menopause or from what I can find online. Gynae did suggest Zoladex injections it said that would plunge me straight into full menopause and could leave me feeling quite unwell so I was put of.

LaDeeDaDeeDa Sadly I have no funds left for any private health care.

MyNewLife2025 Thanks, I will try antihistamine.

pastabest I have been tested several times for coeliac disease, twice with bloods then again via a biopsy during the gastroscope. Thankfuly, I knew that you need to have been consuming gluten at least 6 weeks prior to the tests although for some reason it's not something many realise.

YYURYYUCICYYUR4ME I have never come across this, thanks, I will investigate further.

Thanks Laurelandhearty I am going to look into EDS and MCAS further.

@MellowAfternoon sorry you are going through all this. I don’t have personal
expeience but I have just finished Miranda Harts biography, “I haven’t been entirely honest with you”. This details her journey with complex illness over decades and the approaches she has taken. In the end she was diagnosed with Long term implications of a tick bite in her teens. Highly recommend a read. Good luck 💐

I had a hysterectomy at 46 after several years of dreadful pain, heavy bleeding etc. It was a relatively easy recovery with rest. The most important finding, as well as fibroids, was that I had endometriosis throughout my abdomen and in my appendix! No wonder I was in such pain every month. They removed my appendix at the same time and managed to remove some other bits of endometriosis.

I have never regretted the operation for a moment. It was such a relief to be free of the pain and worry every month. I also got a free tummy tuck effectively.

Thank you so much for this.
My gynae is quite dismissive imo, he's not explained things as well as you have. No wonder I constantly feel irritation within my rectal area, I genuinely feel as though my colon is being squeezed by an iron fist. He wouldn't even discuss my bowel issues with me, as soon as I mentioned it he waved his hand dismissively and said "we are not hear to talk about gut issues, I'm a gynaecologist" 🙄
I'm sorry you suffer with this too. It really has caused me so much stress and anguish. Medical professionals just don't appear interested in endometriosis at all. I have a friend who has lost part of her colon and a kidney to late diagnosis.

My DD16 is having gynae issues and as my sister has endometriosis (diagnosed at 45 when they suspected ovarian cancer which turned out to be a huge endometrioma) and with my diagnosis I asked her gp if she could be referred to gynae to check and her reply was why on earth would I put my daughter through that and I'm just putting my own health fears onto my DD. I replied it's because I don't want my DD to suffer for decades in the way my sister and I have. Her advise? To go private!