symptoms ?

[mjo44]

Hi all, i was diagnosed over 3 years ago with endo & adeno.

This year i went back on prostap even though it made mw extremely unwell the first time & after the second month injection around 7 days later i became very unwell, with pain in left upper abdomen, tightness of throat, tingling tongue etc... i though i was having allergic reaction or summit.

Ended up going A&E and sent home after watch and wait. Anyway this left sided pain continued every time i ate and i was being turned away from hospital, GP every time i went and i was begging fir help because i was having to starve myself to control the symptoms.

After 8 weeks of no food i ended up in hospital on a fewding tube for 9 weeks, and refused any investigation test being told its functional bowel,

Even though i had a diagnosis of endo & pancreatic insufficiency both affecting my left side!

Anyway luckily i had an app with gynae that was at the same hospital so they agreed to see me on ward.

Straight away they said we believe its ur endo affecting bowel and diaphragm.

Long story short they agreed to put me back on prostap & see meas outpatient, but failed to tell me id be on a waiting list for 52weeks lol.

so i am booked in for surgery via private route in 5 weeks,

But my symptoms, im in so much fear that its not endo but maybe some kind of blood vessel or artery blockage.

I didnt suggest this to consultant cuz i didnt think it could be that until today, but i showed him the pic of my stomach and he believed it was endo or bowel pushing on a vain.

I'm really scared and i feel if i went back hospital they would keep turning me away again n same with GP.

So i just wondered does anyone relate to these symptoms?

My surgery i had before i didnt know was ablation not excision.

They removed scar tissue covering left side of bowel & endo pouch douglas.

My symptoms are severe pain upper left abdo (can barely walk, cant stretch, or bend, or lie on side)

Right side abdo mild pain

Vain showing on left side abdo

Feeling of cold rush sensation through body, breathlessness, tingling tongue, tingling left hand, tightness in throat.

My concern is a blocked artery or blood vessel and honestly that i may just randomly die.

Ive dealt with pelvic pain for years from endo, but this is something else pain wise it is the most debilitating thing i have ever experienced. The pain isnt even pelvic, or when it is pelvic its more the pressure feeling weighing down.

My abdomen mainly upper i feel if i walk i have to hold underneath and ontop as if my insides are falling out, i regularly get ripping sensations.

Pounding chest, shaking and trembling through body (almost like its my veins)

Bowel movements affect my whole abdomen mainly behind belly button like pulling!

And constant feeling of faint like going to pass out.

I guess if it was adhesions it could make sense as the scar tissue that was removed was on the whole left side.

But can anyone please let me know what your symptoms where when you had adhesions or endo affecting bowel or diaphragm etc...

scans ive had recently showing normal

CT with contrast

MRI without contrast

Colonoscopy

Gastroscopy

I was on prostap again & didnt get this months injection & symptoms are mega worse but unsure if its due to no prostap or summit else, wont know until i have a period but i dont know when that'll be

Ive attached a pic of abdomen when you can see vein on left side.

Many thanks in advance xxx

[moonghost]

Firstly I’m so sorry you’re going through this! It sounds really painful and frightening. I’ve had a laparoscopy to remove lots of endo before and have another next week - I have bowel adhesions and having a bowel movement causes pain and downward tugging.

There are other things that can cause faintness, shortness of breath, hate rate going up and down, and sweating with bowel movements - the vagus nerve being triggered and also gallbladder issues like gallstones, which also cause incredibly intense pain in the upper abdomen under ribs and seems to come in waves over the course of hours. I’ve experienced both, and full on fainted next to the toilet more than once.

Severe panic attacks also cause tingling tongue and dry mouth, a cold feeling like someone cracked an egg on top of your head flowing down through your veins, hands and feet go numb and your hands can claw up from smth called tetany, trouble breathing, and your stomach instantly goes haywire. I’ve suffered with them for years and do anything I can to not have them, but sometimes they’re actually triggered when I start feeling pain or worry I can’t get to a toilet 😖

I hope your surgery goes well and that the vein is nothing serious, but it must be making you so anxious all the time knowing it’s there. I’d be freaked out too.

[mjo44 in reply to moonghost]

Thank you for ur reply, yes the gallbladder thing makes sense as i have pancreatic insuficiency and i didnt find out why yet so im hoping its endo around gallbladder affecting or in the gallbladder then cud get rid of 2 problems at once haha

Yes its so scary when ya know ya cant get help from anywhere, the surgeon im seeing thinks its either endo or adhesions affecting the whole of my large bowel.

I too get immense pain, pulling and nausea after bowel movements

I do think ur right about the panic attacks too & i feel my body just cant take the pain.

Ive only had one previous op to remove endo, im so scared of bloody hospitals a cudnt think of nothing worse than having an op every year or 2 🫣

So if mine is also adhesions do they just keep returning after a few months or so ?

Good luck with ur op next week, thats so close ☺️

i bet ya relived for the pain to be over too its such an awful debilitating illness isnt it,

Hopefully we both get a year or 2 remission ☺️🤞🤞🤞🤞

[Missy100]

I really can't comment as to what is causing the vein to pop up like that.

However, I had gallstones for over two years of going back and forth to emergency rooms and being sent home as it being indigestion. Gallstones run on both sides of my family and my mother kept insisting this was what was wrong with me (I was even with her during a few of my attacks, one where I was admitted to hospital and again told it was just indigestion).

Anyhow, my point is that in over two years of constant attacks, when someone finally agreed to send me for an ultrasound (but angrily did it 'just to shut you up, but I am putting it on the record it is against my better judgement and I am telling you now it is a waste of money"), they found me full of gallstones. When the surgeon I was later seen by operated, I was so badly infected that they had to switch to open surgery (from keyhole) and the operation went hours past the expected time. I ended up with a scar a foot long across my upper torso.

Even with all of that, I never had any vein bulging across my stomach/torso.

But yes, gallbladder attacks came seem to come out of no where. People often start where certain foods seem to give them attacks, and later just about anything you eat ends up leading to an attack.

I would take a week of charting what you eat, and when, your bowel movements, and any pain you have (where it is, what it feels like, anything that helps alieve it, etc) and be meticulous with the details including when any pain starts, how bad it is on a scale of 1 - 10 (10 being the worst) and anytime it increases in level, document this as well.

Also take images. Any time you notice any visible change in your body, any worrisome bleeding (it isn't tmi for a doctor) and also document any changes in your bowel movements (whether new or continuing). Don't forget to write down any shakes, shivering, nausea, vomiting, unusual sweating, or anything else out of the ordinary that occurs along side your symptoms.

Once you have the week long documentation, book an appt at your GP, and if they are not helpful, go to the ER.

I would also insist they document everything on your record, and then ask for a copy of the notes from the appt. You may end up needing to submit a request in writing, it just depends on the rules where you see someone.

It is harder to ignore someone when they put all the details in front of you in black and white, especially if they are detailed. And further harder to ignore them when you point blank ask them to record it all on your record (including their response and why they came to that conclusion) and then ask for a copy of your record showing it has all been recorded. It will put them in the difficult position of doing something, or if something does end up proving serious later on, being held responsible for not doing something about it when you went to them.

I wish you luck and hope you get to the bottom of this ASAP. No one deserves to be left in such a state of worry and suffering.

[mjo44]

thanks so much for your reply, cant believe they had you chasing it for 2 years, well a can believe it actually.

Hope you're doing a lot better now?

Thanks for the tips, im absolutely gunna make sure everything is on record