Crippling pain

[Lornalost89]

Hi All. Some time ago I left work feeling in pain (upper central abdomen) long story short I ended up in A&E with suspected gallstones. Turns out It wasn't and I was sent on my way with pain relief. I have DIE of the rectosigmoid. Uterus and cervix, cysts on both ovaries . ( I don't know anything else as I havent actually seen anyone since my MRI or seen my full report just snippets)

Well this pain happened again. Very suddenly doubled over crying (in an open plan office) unable to move screaming in pain they wanted to call an ambulance I refused and my partner came for me. Same place central Upper abdomen 3 hours later and a bit of codeine I'm a bit more comfortable. Not ok but better than I was.

I was just wondering If anyone else wxpirences this type of pain with their endo? At times it feels like someone has climbed in through my back and twisting my insides. It's a new pain to me and not one I've expirenced a lot but my word I've never expirenced pain like it (and I have a very high paint threshold)

[MangoStickyRice]

Hi Lornalost89,

So sorry that you are going through this. My pain similar to that seems to be lower down but feels like someone stabbed me and is twisting the knife. I am yet to be diagnosed.

[Moon_maiden]

Hi

It’s not pleasant. I get it and still do even after having gallbladder out. When they said it wasn’t did you have a scan? I had scans that didn’t show it, then two weeks after an op which straightened bowel gallstones showed on ultrasound. It was pure fluke as I’d gone to check an incision that wasn’t healing and he checked all over. When they removed it it was described as chronic so I’d obviously had them a while. I think it’s about timing.

I suspect I still have Endo somewhere. Don’t ignore the pain, especially if they didn’t scan last time

[Lornalost89 in reply to Moon_maiden]

Hi.

They did scan. My markers were up but scan clear they had me back for bloods over a number of days, they put it down to muscular pain but this was prior to an endo diagnosis so I'm not sure if it's something separate or if its linked to the endo? I know bowel endo can give gastro issues. It certainly isn't muscular its worse than any pain I've ever expirenced.

I've been passed to a specialist hospital now but don't see them till July so will discuss it with them unless it happens again andbil be back to A&E

[Moon_maiden in reply to Lornalost89]

The pain can be horrendous, totally different to muscular pain, although that can get pretty bad.

Check the hospital for cancellations as well, my local ones you have to call regularly but they do come up. 🤞 you don’t get bad enough for A&E

[Char411]

hi,

I’m sorry you’re experiencing this.

I experienced this exact pain in 2020 and it was pancreatitis caused by gallstones, however I was admitted to hospital 3 times over 5 months before they finally found the gallstones on a scan (my 4th one for suspected gallstones) my friend also took a year to finally be diagnosed with gallbladder issue's.

My pain came on very suddenly, exactly where you have explained and it also felt like it radiated into my upper back. Sometimes the pain lasted hours and hours and other times it would pass within 2 hours.

I ended up having my gallbladder out in Dec 2020 (best thing I’ve done). I wouldn’t rule out gallstones just yet. One way to test it is eat a high fat meal and see if the pain comes on (once even some peanut butter triggered an attack for me, usually 4-6 hours after eating)

I had to be on a super strict extremely low fat diet (it was miserable) whilst awaiting my surgery but it kept those pain attacks minimal

I have endo so also have a high pain threshold (what choice do we have) but this pain knocked me off me feet, one time I was laying in a ball on the floor crying.

I hope they find the cause soon xxxx

[Lornalost89 in reply to Char411]

Thank you! I've been up since 2am with it in my back! Right in the middle like between my boobs! 🤒It's been over 12 months since this last happened. I keep a food diary for my endo flares and yesterday I actually hadn't eaten all morning and I'd just started my lunch when it happened so I can't find anything linking the two episodes apart from either water or 1 coffee even though I have 1 cup every single morning and not had a problem for months. I sometimes wish we just had a magic mirror that could scan us and flag up the problem 🤣 as I know il no doubt have to wait for another attack of whatever it is to get anywhere with my gp 😒

[Avourneen]

I have this quite a lot but I have endo through my my bowel and diaphragm and I also have a small Hernia and adenomysiois. Going to A and E is a waste of time, they have the least experienced doctors and they probably won't have any specialist gynaes. Th pian needs to be investigated so go to a gynae who specialises in treating endo, get an MRI or Internal Ultrasound and ask the gynae if excision would help. I can't have this as again as everything is too stuck together. It's worth seeing a gastro specialist too they will be able to see if it is caused by anything there. Get it all looked into.

Good luck.

[Jade2006]

you need to request copy’s of mri report and find out how big those cysts are .

Mine was very large and caused me to cripple over in very severe pain .

I have bad pain anyway but that was a different level couldn’t even stand up straight at times

[Lornalost89 in reply to Jade2006]

Thank you. I have asked for a copy of the report. I have an appointment for July I've asked to be on the cancellation list etc but the hospital is over 3hrs away so I need a good bit of notice 😐

[Jade2006 in reply to Lornalost89]

Do you know how big those cysts are ?

As if they are large they can cause ovarian torsion x

[Lornalost89 in reply to Jade2006]

Nope. I had 6 weekly scans planned in but then discarded and GP told me to "take it up woth My consultant" and I see someone in July first time since September so I'm guessing any scans will be useless by then as out dated. I've had ovarian torsion previously resulting in emergency surgery with a 13cm dermoid cyst and another cyst on the other side but this was a different pain high up x

[Cocoacupid]

yes hun have same I have die effecting my bowel and at times feel like I’m dieing like you I did used to have a high pain threshold but now no. Like you had an mri last September no results given to me at all and just being left in the dark. I have complained to the hospital to release the report as I phoned up gynecology and the receptionist promised back in October to get my consultant to tell me my result but to no avail. I’m on waiting list for a Coleractal surgeon along with my gynecologist consultant to unfreeze my frozen pelvis. I have severe anxiety due to probably being autistic and waiting for a diagnosis for that that should also be this year as have been on that waiting list nearly two years . I think I have a chocolate cyst again as I’m spotting and have severe pain again . Bear in mind I have the coil so I don’t bleed every month but the pain is crippling but for me no point going to the hospital as they will send me on my way and say wait for surgery even though the pain is bad . At least my surgery should be around June but it may be later than that it just depends . I also get severe groin pain and discomfort in my privates a lot of the time now have done for the last couple months and not sure why really. I used to have. A high pain tolerance but now the pain brings me to tears. Am a hundred percent behind you. I really think the doctors or consultants like to gaslight us and make us suck it up and say we exaggerate the pain or that other people in the same boat and we have to be patient. I read somewhere that a frozen pelvis is a medical emergency and that it needs to be removed promptly so you don’t get severe issues even more with the bladder or bowel function. They take as an emergency in America . But here in our country the let you wait a year or so to do something I honestly don’t understand the logic in this country that a lot of the time they just leave us in pain and quite often the pain relief we are given isn’t even adequate to come close to removing the pain. Why because our bodies get used to pain killers and things and over time they stop working and are in helpful. Unfortunately I have probably fibromyalgia as well and I’m extremely sensitive to a lot of the medications they give to us for pain relief especially anything morphine based. I hope you get some relief and know you are not alone .