Undiagnosed 10+years, chronic fatigue, bowel issues, pelvic pain etc

[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 in advance xo

[ButtercupDaisy]

I’ve suffered many of these conditions over the last 25 years, seen every type of consultant you mention. I have a PsA diagnosis, fibro diagnosis, IBS and myofascial pain syndrome. Immunologist ran numerous pin prick tests and discovered several allergens which allows me to steer clear of certain things. Brain fog and right-sided tingling numbness currently being investigated by neurologist for MS and awaiting results of a lumbar puncture. It’s a murky picture.

BUT ………. the abdo and gynae problems, bloating, pelvic pain just as you describe and which I’d suffered from for several years AND had been on Cerelle were eradicated for me by removal of endometriosis and adhesions which had connected my bowel, bladder and womb. When one moved, they all did! A laparoscopy was performed and adhesions removed. At the same time, I had a Mirena coil fitted and was taken off the Cerelle. I’ve not had bloating or pelvic pain for seven years since! Nor do I get periods 😀!

Have you considered Cerelle may be a contributory factor to these gynae/abdo/bowel problems and asking your GP for an alternative? Cerelle also caused me problems including mood swings, breakthrough bleeding and headaches. It clearly didn’t suit me. Stopping Cerelle worked for me and whilst it clearly can’t cure all my ills, it certainly reduced them. I wish you well.

[Gigiruth]

Hi Nik222Your health sounds complex, I think you must be so tired of it.

I too have had complex symptoms over many years. We cannot give advice as such on here but do share our experiences.

Pain medications have not helped and I have been drug free with natural alternatives for 10 years.Drug free not pain free but I manage. I like devils claw when I have to take something.

You are watching what you eat with Fodmap

I found inulin powder helpful and kefir helpful in diet. I sometimes take enzymes.

Sleep also made a big difference. I had advice from Sleepstation and used a sleep metranome ( such as dodow)

I have a autoimmune condition and find stress sets my body off badly.

I hope you find some peace with it all. It can be so very tiring.

Take care

Gigi

[Ukulelelady1 in reply to Gigiruth]

Just one thing I’d like to add here, if anyone is doing low FODMAP diet, you do not want to be taking inulin, it is something which is not allowed on a low FODMAP diet, and can actually cause stomach cramping and diarrhoea. It can be found as an additive to foodstuffs, including a certain brand of dairy free chocolate.

[Gigiruth in reply to Ukulelelady1]

Thank you. Very useful information.

[Fillingincake]

Have you tried golden linseed for bowels, half teaspoon in cooked porridge, works for me. I-have various areas of sweating, I just accept them. Healthy diet, try distracting yourself. It’s a lot you have to put up with, you’ll get there.

[klr31]

The big thing which leapt out to me is that you are on only 25mcg thyroxine. That is a tiny dose. What are your blood tests and how long have you been left on such a small starting dose? You probably need an increase to slowly get it up to where it should be. A lot of your symptoms may resolve when you do.

Karen

[klr31]

Ask to see an Endocrinologist. Check your D, B12, ferritin and folate. Medichecks do private tests if your doctor won't.

Karen

[Ukulelelady1]

You have a lot going on there, and there’s no easy answer, as you’re finding out. It sounds like you have more than one issue which is complicating your diagnosis, as a lot of symptoms will overlap with different conditions. Has anyone ever tested you for coeliac disease? You do need to be eating gluten daily, for you to get accurate results. (I know you say you are on a gluten free, dairy free diet, but you may be accidentally eating things that may contain gluten, without realising it - also a lot of people who are coeliac, also have the same auto immune response with oats, as they do with gluten, I can’t tolerate even gluten free oats or quinoa).

Also, does your doctor regularly check your TSH levels and T4 levels, as 25mcg is a very small amount of thyroxine. It’s also important to remember, that if you have one auto immune disease, you are more likely to be diagnosed with another.

Sorry you are having all these problems and I hope you get some answers from rheumatology etc. soon.

[jules6]

Have you been checked for Crohns?

[SlowDragon]

Hi Nik222

Sent you a message

[JayCeon]

Hi Nik (and also ButtercupDaisy and Gigiruth ): Severe overreaction to my 2 jabs with 25 new or changed symptoms pointing to histamine or similar has taken my journey to find that "MCAS" is the best explanation & help for all the complex pretty inexplicable symptoms I've always had (don't react to normal treatment) and plus all the old and new strange allergy/ oversensitivity ones (new esp. sinuses & skin), the changed kind of fatigue, and also the fibromyalgia.

Afrin in the US and Molderings in Germany are 2 major researchers/proponents. This is a short summary with German and English questionnaire: humangenetics.uni-bonn.de/d.... I've had success with supps, lowering histamine an antihistamine & exercises, and am now tackling the remaining severe fatigue with Chinese acupuncture. There are 20 meds to try by trial & error, but all pretty aggressive, so not for me.