Any clue why I feel so shitty so much of the time?

[CaraVann]

I can't work out if I feel the way I do due to a myriad of issues or if it is simply one thing? My GP is next to useless and has left me to it.

I am 51 and in perimenopause which is certainly not helping my issues BUT I was feeling this way a long time before peri hit.

Firstly, I have a history of gynae issues and from the day my periods came at 12 they were very heavy. This resulted in years of anaemia and low iron stores. I have had various gynae procedures over the last 12 years and polyps have been removed multiple times. I had a uterine ablation 2 years ago which has failed and I have since found out that I actually have endometriosis. I had iron infusions 2 years ago and no longer have periods due to the ablation so my iron levels are now supposedly 'normal'.

Due to being in peri I have tried HRT but it has exacerbated the endo pain so I had to stop it.

I have also suffered from IBS for the last 26 years, not sure if its related to the endo but won't know for sure for at least a year as I am on a NHS wait for a laparoscopy but nonetheless I have lower gut issues and a very unpredictable gut (mainly IBS-D). I have had almost all the gastro tests possible and all come back as ok ( 2 colonscopies, gastroscope, coeliac, bile acid malabsorption etc).

Alongside the lower gut issues I have upper digestive problems too. Regular (almost daily) nausea, burping, acid and general upper discomfort.

I really don't know if the above has any effect on my other issues but I also suffer regularly from the following and have no idea why this could be,

Regular, almost daily exhaustion. I feel so so tired despite getting regular 8 hours a night.

Not sure if related to the above but I regularly feel very weak and shaky, not so much physical weakness, I still have strength but it is as though a tap has been left open and all my energy has drained from me. I also feel as though I have internal tremors, hard to explain but it is similar to a feeling of shock, like if someone stepped out in front of you when you were driving, you suddenly had to do an emergency stop. It is similar to that feeling you'd feel immediately after such an event.

I am also very bendy, always have been but not in a good way. I ache a lot and find my elbows, hips and lower back really hurt a lot. I have mentioned joint hypermobility but GP said many people are hypermobile and that was that.

I suffer from an almost permanently blocked nostril and feel as though my mouth and back of throat is raw and on fire (although looks fine). Not sure what this is but wonder if it is some kind of acid issue from my functional dyspepsia.

Tinnitus which drives me to insanity.

TMJ disorder which I have had for years.

I had a ct scan in 2019 which picked up a very large kidney cyst (larger than the actual kidney) which I had scanned for 2 years then discharged as being just one of those things. The ct scan also picked up some other findings such a a few liver cysts, a small adrenal gland cyst and lower disc degeneration. Was told these were all incidental and insignificant but thought I would mention them.

Had full blood panel taken last year. All came back as 'within normal range'. All kidney, liver and bone profiles good. I notice though that my white blood cells are always low, have been for many years but no one has ever explained why that could be. My B12 is on the lowish side of normal and so to are my iron levels but GP says all ok because they fall within NHS acceptable levels so I don't know what else to do there.

I live as healthy as life as possible. I am slim, I don't drink or smoke, in fact I only drink water. I follow a special diet to help my gut. I exercise, meditate and do all I should be doing for a healthy life but still feel like utter shite every day.

Can anyone relate? What can I do to feel better? Any suggestions.

I’m sorry you have similar issues. It really is beyond frustrating when no medical professional seems to be able to help, it leaves us in constant limbo land.

I feel so very let down and that grates on my nerves every day. I’m beginning to build up so much resentment over it all and that’s obviously not helping me at all but it’s hard when you are in pain every day.

I have had suspected endo since my 20's. They couldn't diagnose without a laparoscopy and they couldn't do that until I lost weight (which never happened).

I had horrific agonising periods for years until I had my DC. I literally couldn't work for 2 days each month due to the pain and other symptoms. I was treated as if I had it, which meant going on the depo provera injection (in my 20's). I also told the female GP that I was bleeding from the bowel each month. I have had IBS since my 20's.

They said that there was no other way to diagnose Endo. I mentioned it over the years and was never told that there was another way. When I had pregnancy scans I had small cysts on my ovaries.

I hope that you find something to help you ongoing. There isn't a day that I feel well now and it does get you down.

That’s just awful, they are palming you off, why on earth do they do that to us?

My endo has been diagnosed via a pelvic mri. I am now sitting on a long wait for a laparoscopy to 100% confirm and remove the endo, although I’m pretty sure they’ve shoved me on the waiting list in the hope I’ll go into menopause and it will go away (I have had mixed info on that too)!

So sorry you are dealing with such a lot OP. I can absolutely relate to the Vit B12. Feeling awful atm with extreme tiredness & tummy problems because I am overdue for my 3 monthly injection. When I have it, it’s like a miracle!

Thank you. I really need to look into having a few to see if they improve my current state.

I had constant tiredness and anaemia throughout my life. I finally was diagnosed with adenomyosis and endometriosis when I was in my 40s. I was initially told I had IBS...

I ended up having a hysterectomy when I was 45 and that improved things. I really had to push for this and it gave me my life back.

If your GP is not taking your concerns seriously ask to see someone else for a second opinion.

It really makes me angry how women are so often dismissed by health professionals like this...

Having had wide excision for Endo at 43 I'm going to hazard a guess you have very high histamine levels, hence the HRT reaction.

I'm going to put money in those scans showing endometriosis shadows on your liver and. Kidney could have been a endometriosis cyst.

The food, tiredness and all symptoms are classic endometriosis, even the shaking.

I hope you can get referred to a endo clinic that will not do "ablation" laser and only does excision where they find and remove the endometriosis cells. Or if you can afford private Google Peter Barton smith. He's based in London and life changing.

I just regret not having a hysterectomy at the same time.

Being hyper mobile can give you loads of GI symptoms!
And tiredness/exhaustion

GPs don’t know much about it apart from you’re bendy so what!

www.healthline.com/health/histamine-intolerance#treatment

His time intolerance is also linked to mass cell activation and hyper mobility and really common in endometriosis patients, in fact it the link they are research heavily.

You could speak to the GP and try an antihistamine daily and see if it helps its a low risk was to eliminate some issues.

It boils my blood too, why are we left to suffer so much?
Tbh, I rarely visit my gp these days as antidepressants seem to be her go to for all ailments. It’s my gynae I’m most disappointed in. I had been seeing him every year since 2013. I had endless hysteroscopies, polyp removals, us scans etc. I was struggling with my gynae health all the time. So annoyed it took him 10 years to discover I had endo and adeno and even then it was because I had requested the mri. I’d still be none the wiser had I not asked. And even upon this discover I’m shipped over to the endo team and stuck on a further year long wait.

I complained to PALS but was just given an apology!

I have looked into this but I don’t ever have hives or wheezing etc, can you suffer MCAS and not have these issues?

I suppose I could try an antihistamine and see if it helps, don’t suppose that would harm me?

My first instinct was poor gut health which I was more sure of as I continued reading. The gut can affect PCOS, mental health, and obviously you are struggling with IBS and food intolerance.

Would you consider incorporating more and different types of foods into your diet to encourage a healthier gut biome?

If your last ferritin level was only 30, and with your current diet (not iron-rich), I think a decent iron supplement might be worth a try. Yes, 30 is within range, but at the very bottom. I felt terrible with low ferritin.

My DD has hEDS - diagnosed by a Rheumatologist after GP was certain it was fibro. She's not yet 20! Ask for a referral to rheumatology of you haven't already been seen there.

When you were tested for coeliac were you eating gluten? Your diet doesn't seem to include it at the moment. Coeliac tests don't work unless you have been eating gluten for 6 weeks prior to testing.

I don't have a thyroid anymore so am on hormone replacement. I'm not peri but I feel awful unless my T4 is at least 18. I imagine you'd need at least that in peri. I feel wobbly, utterly drained and exhausted and quite weepy if my levels get too low. I would really push back on that-why not ask if you can try a low dose?

Have you got the money to see a woman's health specialist privately? It really sounds like you aren't being taken seriously-how can a cyst as big as your kidney be ok!?

Don't take a B12 shot just yet. Join the facebook group Vitamin B12 Wake Up. If your folate is on the low side it means your B12 cannot be utilised properly. This gives false higher readings of B12 in your blood tests. Take some folic acid for three months then get your 12 tested but do not take any multivitamins or supplements with B12 added, nor any fortified foods such as energy drinks and marmite in the meantime.
They have a great chart/diagram on that group that lists all the many many symptoms of B12 deficiency and if you show a copy of your blood results they will be able to advise accordingly

I’m going to make an appointment with my gp so I can have a re-test of my bloods. I do feel just how you described.

The kidney cyst does concern me but I was under the urologist from 2019 (when it was first discovered) until 2022. He said there was no change and he was happy to discharge me. I have had an abdominal ultrasound this morning for my gut issues and they scanned my kidneys so I’ll find out if there has been any change.

I have my first appointment with a dietician next week so hopefully she may be able to help me with my food fears.

Thank you. I have a gp appointment soon so will ask about a referral.

I was fully eating gluten and had been for a year or two when I was tested for coeliac.

Thank you, I’ll check them out.