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Why do I keep experiencing these symptoms? What could be causing them?

5 replies

Picklingwalnuts · 03/06/2025 17:19

GP is of no help but I don't know that to do anymore, I don't want to keep feeling this way and it's making me so miserable.

I do already suffer from some chronic health issues.

For most of my adult life I have struggled with chronic digestive issues. Despite things getting worse as I age and enduring endless uncomfortable tests the diagnosis remains the same:- IBS. I experience daily gas, nausea, bloating, gurgling, urgency in the mornings with anything from constipation to loose, a feeling of pressure in my rectal area as though I need to pass stool all the time etc. Basically a very unhappy digestive system from stomach through to rectum! Over these 30 years there I feel that I have left no stone unturned, I have tried everything suggested for this condition but nothing helps long term (no medication, removal of certain foods or adding others in, probiotics, off the shelf stuff, exercise, meditation, hypnotherapy...........).

Alongside this I have also suffered from very heavy periods, painful ovulation and basically had to build my life around my cycle. I was also anaemic for years and recently discovered that I had very low ferritin for over 10 years (No GP informed me of this, I found out when I signed up for Patient Access).

After years of having various gynae procedures to ease the bleeding I discovered 18 months ago that I have endometriosis and adenomyosis (still ongoing with treatment due to the very long waiting times).

In 2022 I had iron infusions and an ablation to cure the anaemia. This helped and my iron and ferritin levels are all 'normal'. However, one symptom that I always used to put down to the low iron still continues and is really annoying me because I now my iron levels are normal I have no idea what could be causing it.

It starts with me suddenly feeling really worn out/tired, this just comes on out of the blue. I will feel very weak and shaky, almost to the point of a panic attack. I literally feel as though I am shaking internally and my stomach will hurt, it will bloat and I will start burping. I will then bloat even more, sometimes I will need to empty my bowels and then feel as though I need to go into a deep sleep. This will continue for a few hours. The only way that I can explain it is that it feels what I can only imagine sudden plummeting blood sugar levels would feel like. As though a tap draining all my energy has been turned on. I feel completely washed out after.

What on earth could this be? It happens regardless if I have eaten or not and usually occurs mid afternoon and continue for several hours. I will struggle with this several times a month, often more. I am currently experiencing this as I type.

GP has no idea. All my bloods last year came back as normal and I do not have diabetes or any blood sugar issues, as far as I know. I do have a tiny adrenal gland nodule which was an incidental finding on a ct scan from 6 years ago but no one was concerned about this.

I am 52 and have been on perimenopause for around 7 years. I know peri isn't the cause of any of my issues but it has definitely been like gasoline on an existing burning flame, making things a lot worse but it's not the cause. I have tried hrt but it seemed to make my gut issues worse.

I am so fed up, there are few days a month that I actually feel well and/or symptom free. Without sounding like a drama queen, it's becoming a miserable existence. I don't know where to turn because my GP seems clueless.

Any ideas what this could be?

OP posts:
MaryGreenhill · 03/06/2025 17:27

OP l put everything into Chat GPT , l nursed for 38 years and have no idea so l thought it may help and it certainly wouldn't do any harm. I am sending you the findings via OM . Very interesting what they have come up with . Good luck 🤞

sanmiguel · 03/06/2025 17:30

Hi have you been assessed for fibroids? For me this caused chronic urination issues but for others causes similar symptoms to IBS and chronic constipation or urgency. I know you say you’ve tried everything diet wise but have you been vegan for a prolonged period? It does help with inflammation. Having had a hysterectomy following urgent referral via cancer pathway due to my symptoms, I’m finally free of symptoms including the sciatica and urine symptoms that were all odd and didnt seem related but were. Join the fibroids uk and hysterectomy staters uk fb for more support with your existing conditions which are likely (alongside possible fibroids) causing all your long term debilitating symptoms. I’m not suggesting hysterectomy is needed but just that the site is full of women experiencing the same as you feeling like they’re cracking up due to the array of random symptoms that get brushed off time and time again! Good luck

Fearfulsaints · 03/06/2025 17:33

Have you looked at SIBO already? And B12 deficiency

MissNowt · 03/06/2025 17:45

OP, apologies for the vagueness but a hairdresser I went to a couple of years ago had very similar symptoms to you. Periodic spells of being shaky, weak & very very tired/slept for ages/washed out. Upset stomach & breathless too. She had an MRI & it was a cyst (not cancer) pressing on I thought her pituitary gland, but it might have been her adrenal gland. Sorry I don’t know more as I moved away. That’s probably not much help but I wonder if it might be worth further exploring the nodule with your GP? She was more or less your age too.

Picklingwalnuts · 03/06/2025 17:59

Thank you MaryGreenhill

sanmiguel Thanks. Fibroids were never found but I had recurring uterine polyps which were removed via hysteroscopies several times. I ended up having a uterine ablation in the end. I will need a hysterectomy due to the adenomyosis which was caused by the undiagnosed endometriosis being forced into the walls of my uterus via the ablation!
I would love to go plant based as I don't enjoy eating meat but have always been hesitant to do so as I fear the high fibre foods would exacerbate my gut issues.

Fearfulsaints I tested positive for hydrogen SIBO a few years back, the antibiotics made me feel dreadful and I don't think they did much as I am still suffering. My gastro has told me to ignore the SIBO as the tests are really unreliable. My dietitian said the same but online support groups tell me a different story. I am very confused regarding the overgrowth tbh. Not sure what to do and my gastro won't prescribe me rifaximin anymore and I can't afford it privately, it's really expensive.

MissNowt The adrenal nodule has always been at the back of my mind, I need to look into that a little more. The ct scan was 7 years ago, it may be bigger by now?

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