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?

Thank you, I really do need to go back to the gynae department.

the eye symptoms are normal … it’s an aging process which starts at 30 years old… you get these floaters and blobs which get worse with age unfortunately.

I have very similar symptoms to you…. I too have seen many specialists with no clear diagnosis. I think part of it is age, female hormones, diet and weight plus anxiety.

Pinkdelight I am embarrassed to say this was from a box dye which went very wrong, I don't usually dye my hair. I wear hair toppers as my hair has been this thin for years. I dyed my hair this time because my new topper didn't match my bio hair so I ended up with the box dye disaster lol. Won't be doing it again.

Celticgold Thank you, I will ask my GP.

Sparkleystuff My bone profile came back as normal. My sister had parathyroid disease, she had the tumour removed a few months ago, her bone profile was all over the place.

Guavafish My bmi is only 20, I don't think Mounjaro would be safe for me but I do know of several people who say taking it has 'cured' their IBS which is strange.

My NHS hospital is a BSGE accredited endometriosis centre. Last year I did consult privately with the most favoured endo gynae in are area. He was brilliant and I would go with him if I had money to spare but the hospital charge £7500 for excision surgery, I am currently not working so can not afford any private care unfortunately so sadly that is our of the question for me.

I will try to get another appointment with my NHS gynae to discuss everything again and to find out where I am on the waiting list.

And in the meantime I will start with the antihistamines as so many have recommended that I try. Which one shall I take though? Just a standard off the shelf version?

Thank you

@MellowAfternoon oh that's so good to hear, but ask to change consultant as the one you have sounds awful.

So I buy from Amazon in bulk and take 2 alllacan every evening.

I'm 4 years post surgery and it's been life changing for me, took maybe 18 months to recover and then I'm just always having to lower inflammation. I also had pouch of Douglas endometriosis mine mostly caused bladder issues, and I had endometriosis on every organ even my diaphragm.

At 47 it had been there my whole life and been ignored by GPs my whole life.

Mine never showed on scans which can happen so even the scans can be wrong or make you think you are going slightly mad.

Good luck with it all x

Hi op, I know this has been a busy thread but I just wanted to jump on and share what’s worked for me in case it might help.

I agree with a pp, you probably have several things going on. My symptoms weren’t as bad as yours but I did have frequent migraines and hair loss and back pain, sciatica , general other aches and feeling tired all the time.

stress was a contributing factor. maybe the stemming factor. so I did lots to support myself physically and mentally to get better.

physically I over time built up to walking every day and eating nutritious foods. As well as taking;

for hair loss (can be exacerbated by dairy free diet!)

• iodine (from sea weed)
• brazil nuts

for stress/migranes

• magnesium supplement. I like nutrition geeks

general other

• iron
• b complex

take as good quality supplements as you can afford. Cheap big tablets give me headaches.

I now just take the magnesium. It really helps to reduce the frequency that I experience migraines.

Being women you don’t need to have had any specific trauma but just the social conditioning of repressing your emotions, especially anger, can create significant stress in your body. I read https://amzn.eu/d/4B36ecQ but there’s now lots of books along similar lines. It really l helped me to understand the mind body connection and the power of the mind. And an app called curable was very helpful initially.

it will be a journey but you can do it! 💪

Thank you x

I will take a look at the antihistamine.

It is reassuring to hear you are on the mend, tbh I have been very low since the MRI picked up the endo back in Dec '23. I was 50 and left so angry. I always knew my gynae issues were not 'normal for women' as they kept teling me.
I have been under the same gynae department since 2011 and have had consultations and/or some kind of procedure every single year from 2011-2023, never once was endo suggested.

The private endo gynae explained that I was most probably born with it and my hormones triggered it off at puberty.

If I had known years ago I could have made informed choices on my gynae healthcare and opting for a uterine ablation certainly would not have been something I would have chosen had I known I had endo. The procedure has caused the endo to infiltrate my uterus causing the adenomyosis. I did complain but all I got back was the standard "Sorry, we will learn by our mistakes".

Thank you, I will look into all of those things.

I know the feeling so well, we are born with it, that's been proven it's hereditary and the other area you will have to navigate is your HRT but I've managed to balance that as well, just don't use gel and take it easy gradually build up.

I also have CBT and have developed health anxiety and some PTSD after surgery due to the trauma of being gaslit for most of my life, once you've navigated the physical symptoms I'd really suggest working through this mentally as well, don't underestimate the damage that's been done.

I don't know your home situation but take an advocate with you to all consultations from now on, I had to start taking my husband (at age 45) to my appointments so I wasn't spoken to like I was stupid or referred to mental health teams.

So please change consultation.

Just want to say thank you to everyone, all of the advice has been very helpful and given me a lot to work on in my quest to feel better.

I take fexofenadine. This was recommended. You can buy it. Non drowsy.

@MellowAfternoon - I just want to add after reading some PPs is that do not take ACV or Betaine HCL unless you have proven low acid. Please research this properly online as it can make your 'silent' reflux symptoms worse and further inflame your throat/nasal cavities. This is due to pepsin being activated by the acid, which is why you need to read the Acid Watcher Diet book. I'm sure ACV is great for digestion - if you don't have silent reflux!! Betaine HCL is also highly acidic.
According to Jamie Kaufman, leading US authority on silent reflux, low acid is very rare. You usually reflux because your lower oesophagal spchinter is loose, whatever the status of your stomach acid. This would fit in with a diagnosis of hypermobility/EDS.

id say endometriosis/ adenomyosis/ pcos maybe (would explain hair loss)

eds / MCAS and pots / autonomic dysfunction

low cortisol??

big link to ASD/ADHD too for these conditions

I understand how hard it is, but I think it's worth trying a VERY restrictive version of keto for a week or two to see if there is any obvious improvement of your symptoms. Just meat and fish, (steak in particular) with lots of green veg like spinach, cabbage and broccoli, simply cooked with some good olive oil rather than dairy, if you worried about the dairy. Definitely no artificial sweeteners. Maybe after the first week add in some other veg like carrots, tomatoes, onions, green beans, sweet potatoes etc because for you the purpose is not to avoid carbs per se but to avoid foods that trigger your symptoms. So avoid wheat and processed sugar in particular and anything else that isn't very pure and simple. The first few days you'll feel rough and tired but after that you'll almost certainly feel much better in general, even if it hasn't cured you of anything. I'd put money on it improving your headaches and vision, so long as you remember to keep properly hydrated. Then add back in a few simple but wholesome foods one at a time until you can really identify at what point something sets off specific symptoms again.

I've found that some of the foods we are told to avoid as inflammatory high acid foods give me no problems whatsoever, but a very simple diet of meat, fish and greens (even for me when they are accompanied by lots of fats in the form or butter, lard, olive oil etc) seems to be a massive improvement in my GERD symptoms and helps me hugely with bowel regulation/efficiency. So many people report huge health improvements by eating like this, (particularyl with things like rheumatoid arthritis, PCOS and many other long term debilitating conditions, even epilepsy) even if they previously thought they could not digest meat or fat very well. It's a pain to stick to, admittedly, but when you are as ill as you are for years on end it's got to be better than living like that. It's worth a try for a week or two and I doubt it's going to make you feel any worse. What is your blood type?

Also as you have a low BMI could the hair loss be down the fact that you are just massively malnourished because your body isn't processing your food efficiently? If you have constant bowel issues you could could have a malabsorption problem.

If you don't mind me asking, did you have an USS, before the MRI? If so, did it show anything up? I'm currently being investigated for endo. This only showed a small fibroid for me. I'm wondering if they'll do an MRI.

I have had countless ultrasound scans over the last 15 years, they only ever picked up polyps and a thickened uterine lining. Last US was Oct '23, again came back as ok. I asked the gynae for a pelvic MRI which was only two months later and it detected deep endometriosis and diffuse adenomyosis. It's definitely worth requesting a pelvic MRI but apparently it has to be checked by a specialist radiographer.

Oh thank you so much for replying. That's awful, and so painful for you. I'm seeing an endometriosis consultant on Friday to discuss, hopefully this is a good sign that they're going to further investigate. I'll push for an MRI, if one isn't mentioned.

@SleeplikeababyTonight I'm afraid that say I had stage 4 endometriosis that never showed on any scan. I went into surgery without actually knowing I had endometriosis.

That must have been a shock for you, I hope your surgery was successful. I just hope they find out from the MRI, as I don't fancy a laparoscopy. They've ruled out uterine & cervical cancer at least after a colposcopy andba hysteroscopy. I was on the 2ww pathway, and now they're looking at endo.It has been a bit of a roller coaster.

Good luck, I hope everything goes well.

@SleeplikeababyTonight it was a great outcome but paying £7k for a surgery I didn't know I needed what a huge risk but I was left with no options. It all went on credit card.

I was in daily agony at 47 so 25+ years of NHS neglect, but covid and peri menopause flared it up beyond a manageable disease. The daily pain was insane and I was still having to work and raise kids.

So I took the risk, it was a wide excision surgeon in London so I knew I was in safe hands and he found it everywhere, brutal recovery but 3 years on and I'm all good managing to be on low dose HRT and praying it won't come back.

You should try a non toxic lifestyle. For example, not using air fresheners/plug ins, non stick pans, black plastic cooking utensils, plastic chopping boards, fluoride toothpaste, doing a heavy metal detox, parasite cleanse, natural skin care, organic foods, fasting etc. Also black seed soil is supposed to cure a lot of diseases. There's a lady I follow on instagram called laurenvaknine. She cured her illnesses. I don't agree with everything she says (anti vax). But it may be helpful.

Hey, why did you put the plaster on and what kind of plaster was it?

FWIW endo can only be seen on ultrasound if the person doing the scan knows how to look for it - I had a scan at the local hosp where everything was deemed 'normal' (it wasn't - it showed damage to my fallopian tubes which should have meant a referral to gynae but decided that wasn't necessary for some reason I don't understand) and then another at a bsge endo centre which found multiple large nodules. The lesions also need to be over 1cm as ultrasound can't show anything smaller.

Pelvic MRI can show deep endo especially in the bowel but I've never had one on the NHS, I had to go private (an endo specialist in London)