Undiagnosed 10+ years, any advice/tips?

[Nik222]

Hi Everyone

I’m writing to see if anyone can shed any light on what could be going on internally. I’ve been suffering for 10+ years and still undiagnosed though things just seem to be worsening. 31yo F btw. My main symptoms at present are gut/bowel/pelvic related and chronic fatigue which has been at its worst ever for the past week. Also have an Under active thyroid, 25mcg daily.

I suffered from chronic daily migraines in the past which calmed though lately are returning. I have been advised I have ibs though I think it’s more. I’ve seen numerous specialists in the past:

Gastro

Gynae

Rheumatology

Max-facial

Colorectal

Surgical

Immunology

Neurology

I’ve had numerous tests done in the past all which were apparently clear. Colonoscopy, Endoscopy, biopsy of lower lip to test for Orofacial chrons due to lip swelling, h-pylori. Stool test years back which the gastro stated just showed mild inflammation. Most recent abdominal pelvic ultrasound which was clear also.

Throughout the years Gastro and gynae kept pushing me back and forth to each other, yet still no answers.

I suffer from constipation, have been on several sachets of Laxido daily for 7+ years. Left sided abdominal pain which only eased when lying down is the way the abdo pain firstly presented itself. I have a burning sensation type of pain to the left of my belly button every few days however I now have pain all over my abdomen and upper abdo plus right side, not just predominately left sided. My abdomen is constantly distended, beyond your typical bloat and feels like I’m constantly carrying alot of weight for my small frame. Anal fissures. A lot of gut symptoms tbh. Chronic fatigue. Extremely heavy restless legs. Very sensitive to cold, can never heat. Tingling in hands and feet (on b12 injections for less than a year) This has started playing up again big time in the past week with the fatigue worsening dramatically alongside too. I don’t know what’s up, I initially thought it was the b12 running out so I recieved the injection at 10 weeks (last week) instead of the usual 12 and thought the tingling may have settled however it’s actually worsened. I’m not experiencing shooting pains in my hands/lower arms/legs and feet. I haven’t as much strength in my right hand in the past two days. Completely floored after doing the smallest of tasks.

A few years back, 5+ I was admitted for roughly 2 weeks due to an “abscess” showing on an urgent ultrasound, which all started as sudden bladder pressure. I had a diagnostic laparoscopy which showed a Multicystic Benign Mesothelioma or multiocular lesion. It has been called different names by different specialists. This was quite large from what I remember, 9 x 12 or larger. The consultant described it as a bunch of grapes and this was stuck to my bladder and bowel. I was advised there was no endometriosis found during the laparoscopy though I’m doubtful. I was told I would have to have Major surgery to remove part of my bowel and the cystic lesion however when I eventually had an mri to check this again the lesion had disappeared.

Years have passed and my symptoms have been getting progressively worse.

Obviously lost all faith in doctors. Have went private to colorectal to be told to stay on laxido for the rest of my life and probable ibs and that was the end of it. No other avenues discussed nor treatment options.

I’ve been getting on with it because I’m at a loss as to what it could be. If I could just get a proper diagnosis. My GP doesn’t know either but feels it Fibromyalgia, currently awaiting app with rheumatology though I feel it’s something else on top of that. I’m willing to go private again though I don’t know which route to go down, gynae/gastro/rheumatology, endocrinology? I feel like if I go to a rheumatologist they’ll just say fibro and that’s not getting to the root cause of my gut/pelvic pain. My mum suffers from Lupus and I’ve been tested via blood test numerous times but this always comes back negative.

As of recently, a NHS dietician had been in contact with me, upon her recommendation I tried fybogel which I couldn’t tolerate at all, it left me in crippling pain. I’m now back on laxido, on a gluten free, dairy free, mostly plant based shall I say diet. I’ve spent 100’s in the past month or two on foods. On week 4/5 of Symprove. I can’t say I’m finding any difference to my gut/bowel as of yet, I’ve noticed my Symptoms if anything are changing even more and worsening dare I say since really upping the health foods. I’m aware of the gut-brain connection and I’m working on that also. I’ve been sticking to low fodmap foods/serving sizes etc though my NHS dietician discharged me as she isn’t trained on the low fodmap diet so therefore she literally left me in limbo.

I’ve noticed in the past week that at meal times, though more so during breakfast that I have been coming out on red blotches all over my upper abdominal area which disappear rapidly. When this happens I become very flushed in the facial area and I start sweating under the chest also. I’m not sure if this could be a histamine intolerance? Then today the red blotches appeared when I went to the toilet, (tmi-when bowels moved) so this has me stunned again. Has anyone experienced anything similar? I e read that there is a blood test to test for histamine intolerance (DAO) though unsure if I should order privately online or if the GP can request it? In recent days I’ve again, out of nowhere, had lower lip spasms and my upper lip feeling numbing and my both eyes going into what I can only describe as an uncontrollable spasm as such (nothing like twitching) when trying to sleep. The only way I could stop this was by opening my eyes.

I also suffer from extreme deep pelvic pain when bowels move (though the same pain has came on during sleep and woke me up) Sometimes prior, during or after. When I say painful, I don’t mean like a pain when say straining for example, like a stabbing shooting pain straight up down below. When this occurs I get very warm and nauseous and nothing helps the pain, somethings it can last for 15 minutes other times it could be an hour. I’m bound over in pain on the floor when this pain strikes, it’s the worst of all the pain I encounter though doesn’t happen regularly thankfully. No pain relief is helpful at all in terms of the pain. I also don’t have any periods as I’m on cerrelle mini pill.

Have been with my GP again two days ago, now awaiting an immunology app, neurology app and another transvaginal USS however obviously the waiting lists are crazy so. I don’t mind paying privately but it’s which specialist to go to, which field is where im at a loss.

If anyone can shed any light or has experienced similar symptoms I would greatly appreciate your response no matter how big or small 😌 and major apologies for the length of this post i

[Meleber]

Just quickly read your post. You write you already had a consult with a neurologist. However based on your symptoms I wonder it all could be a result of a problem with your peripheral nervous system (neuropathy) because I also have a lot of the all over the body symptoms you describe and therefore asked my GP for a referral to a 'good' neurologist recently. Has a neuropathy already been ruled out by proper examinations before? Do you know if you have family members that were diagnosed with a heriditairy form of neuropathy? Neuropathy can lead to problems with your intestines amongst others. But what triggered me to ask for a referral to a neurologist is the tingling in the fingers and having problems with (body)temperature, a dry mouth (for decades in my case), muscle loss and losing strength in hand and legs/feet (high arch, walking on outer side), excessive sweating. Hence, the body is full with nerves passing signals through the spine to your brains. Some forms do progress slowly so you notice more symptoms when growing older. A least that is what is happening with my body, very slowly getting worse and it already started in my early youth. And this is in my opinion not a part of the normal aging process. Hope it makes some sense what I just wrote 🤔 I also don't have a proper diagnosis yet (52, man) and have seen different specialist doctors but till now they don't know, didn't find the underlying cause. Maybe also due to unawareness in the medical circuit?

[edwangy]

Do you take anything to help you sleep?

[Frasina]

Well, you have definitely tried so many avenues but sadly still do not have the definitive answers! Perhaps you need to see a specialist who can 'bring it all together' so to speak. I know that there are consultants out there who will do this but you need to be advised my your GP who to to go, or you will need to look up specialists (maybe even a professor) who works privately and can collate all the info and then decide what course of action is best. I think that you could well have neuro issues that are transcending to other areas as this is not uncommon. There will be answers - you just have not found them yet. I wish you all the best and hope that you find the right medical help and then medications. x

[edwangy]

I'm in a similar situation, I have constant colon/abdominal pain 24/7 get next to no sleep and meds help. I also have constipation and a slow bowel transit. I get tingling sensation in legs and am very sensitive to the cold. I've had numerous scans, blood tests etc but all looks ok except for slightly low thyroid levels. I'm wondering if that could be the problem. Don't know what specialist to see next, feel like I'm being passed around with no answers.

[waz2]

Hi nik222 i am really sorry about all this thats happening to you i have had ibs or so i thought!!! flare ups etc pain every time i ate 16 hours of pain one night then i found a wonderful doctor who has actually gave me a diagnosis of chronic pancreatitis after lots of scans she gave me medication that stops the pain still have other problems have abnormal cells in my uterus so it could be hysterectomy going into hospital tomorrow i hope you get answers soon i waited years for a doctor who cared all the best lizzie xx

[Iesgobdafydd]

Have you had clicky joints, joint pain or unusually flexible joints at all, or prominent veins and joints? Some of your symptoms are similar to some of mine (which I think are connective tissue related) but some of yours are ones I haven't experienced, or even seen reported on this forum before, so maybe it's a nervous system thing like Meleber suggested rather than a connective tissue thing.

[Ruggerhead]

Hi Nik, I feel your pain, as I am in a similar boat with various symptoms, including 24/7 pain in my stomach. last year alone a few endoscopes, 2 colonoscopys, pill endoscopes. Constipation, muscle pain, twitching, brain fog etc etc. been diagnosed with all kinds of throw aways IBS, Fibro, SIBO, anxiety etc etc. Been on heaps of meds, it seems to me that a good immunologist even a good pain management consultant. Amitripyline might help block some pain receptors and also help with sleep, then its about diet etc. Have you looked at alternative treatments, ie CBT, trauma counciling, Fecal Transplants etc there is a whole other world than over paid consultants who dont give a xxxx about care. I believe that all my problems started with a drug that they gave me, how ironical, messed my body up.

[Funkyfaerie]

Hi Nik222,Has anyone mentioned Endometriosis to you? Only when I was your age I suffered with a lot of your symptoms and that's what it turned out to be, mind you it took more than a year, with me being tenacious, as one doctor said " the pain is all in your head!" which really upset me and at the same time made me angry.

And please don't think I am making light of your dilemma, but constant worry and stress can do a lot to our bodies and we can get all sorts of strange symptoms, that worry us more, and so a vicious circle develops. Have a look at anxietycentre.com.

In the meantime I do wish you well in your quest for an answer. Best wishes