Severe stomach pain

Hello! I hope it's ok to post on here. I wasn't sure where to post but I have similar problems. I had a complete hysterectomy 5 years ago and long story short I have been pretty much bed ridden for over a year with severe chronic pain. It is all in my lower left abdomen. At first they thought it was ovarian remnant syndrom and put me on Lupron for 8 months but it did not take my pain away. The ultra sounds showed a small ovarian cyst lol I have no ovaries!! I have had numerous tests, my gallbladder removed and they are stumped. They did see a large amount of scar tissue when they took a peek with the camera into my pelvis. I just went for a cholonoscopy which they could not finish because of significant scar tissue. I was put under strong sedation but still woke up screaming and crying during the attempted procedure due to the severe pain I felt. I don't even understand that! I never had bowel surgery! I have so much pain and discomfort like pins and needles on top of the pain with a ton of adrenaline all throughout my lower left abdominal cavity. I take so much hydromorphone that it just doesn't help anymore and I also use high cbd oil as well as thc oil (cannabis) for the pain. Lately the overwhelming tingling, pins and needles and adrenaline feeling along with the sharp pain is becoming unbearable.
Does anyone have any advice?

@carolel, Hi Carole,
I have been undergoing some procedures, tests, bloodwork for my chronic, debilitating nausea and there has been no answer, but... I have had pain for 12+ years from chronic pancreatitis and it may be on a 7-9 level with no let up for days or weeks and it may be 2-4 for the same period. The only explanation my doctor at MUSC suggests for this is that 1. chronic pancreatitis is a progressive disease that continues to damage the pancreas regardless of a diagnosis because there is no cure. 2. The drainage duct for the pancreas can become "clogged" and he performs an ERCP and places a stent in this spot, drainage improves, and my pain is better sometimes. 3. During an ERCP my doc has also discovered stones and removed them and my pain is improved for a while, but like other stones in other organs, they can return. 4. For some subset of the population who develop chronic pancreatitis, the pain eventually goes away. There are no studies I have found that place a percentage on this subset and the amount of time between the onset of pain and this mysterious disappearance of pain is wide-ranging. I am either not one of those people or haven't paid enough penance yet - just a joke.

As a former nurse, you may know this to be true, but nurses in my large circle of health care providers at some point during the past 12+ years have told me that from personally experiencing child birth, kidney stones, and acute pancreatitis, that they would choose either of the other two over pancreatitis. Now for a GP who does not understand why you are in so much pain, suggest he shoot himself in the abdomen, not get treatment and see how badly that hurts. (please don't shoot him yourself) There is no research which says that once you stop having acute attacks and are dx'ed as chronic that your pain level subsides - anyone suggesting otherwise is ill-informed and should not be a physician because they don't know what sympathy or empathy is!!!! The only minimal relief I get is from opioid pain medicine and it does not get rid of it; just takes the edge off. Intravenous morphine is much more effective because it does not have as a side effect, at least for me, of abdominal pain. The other medicine I have been prescribed after surgery for appetite enhancement (Marinol - a synthetic cannabis) actually was also the best pain treatment I have used. My cruel state legislature does not see fit to allow this to be used for anything other than end-stage cancer pain. God forbid the medical community be allowed to properly treat someone's pain who is not dying - we may get paranoid or become physically addicted and that would be so much worse that opioid addiction, habituation and the brain changes they can cause over years.

If you think I am a tiny bit bitter, you would be spot on! It is not an option for me, but I certainly would move to Colorado if I were younger or if I could move my entire family.

Sorry, Gary

My son has had intense pain now for over 20 yrs when he goes to the bathroom. Many doctors no answers. Not chrones, ibs, ciliacs or from his surgeries. Had relief for approximately 10 months after intense pain on his left side that just came and then left after 3 days. He and family at our wits end. We are not crazy, if not living this, it would be hard to understand. Please any help or direction as to what to do would be appreciated

Hi @dennisjustin, welcome to Connect! I moved your post into this thread called "Chronic Abdominal Pain" in the Digestive Health group, where members are discussing chronic abdominal pain.
Having to watch your son be in so much pain over the past 20 years, and finding no answers, must be awful.
I’m tagging @mamacita and @astaingegerdm as they can provide some support for you as you help your son through this and continue to search for answers.
Was there anything your son did differently when the pain disappeared or was it random and could only be attributed to the intense pain?

Totally random. He said that he knew it was something different. Thank you so much for answering.

My daughter began having health issues 2 years ago. A seizure started our journey which led to test and a neurologist a few more seizures than turned to migraines mixed with fainting a few times. Diagnosed with migraines put on topomax has seemed to decrease migraines and no seizure activity in a year. Migraines bad enough but than a year ago she had extreme lower right abdominal pain, took her to ER they advised after ultrasound a cyst burst lots of fluid causing pain lasted 1 week. A year later she again began lower right pain. ER ultrasound clear X-ray showed constipation so given enema and miralax protocol which gave no relief. Pain has now been 7 months it’s constant never goes away and she has lost 10lbs in a year and doesn’t seem to be able to gain weight even though she has an appetite and has increased calories/fat. My daughter has had a total clean out;ultrasound shows no cyst or fluid;upper and lower endoscopy came back with EOE but nothing else. Medicine for EOE provides no relief; MRI with contrast just done came back unremarkable. I’m at a loss what can this be and how to help my daughter any thoughts or suggestions would be very appreciated

Hi at @reliefforchild welcome to Connect. You may have noticed I moved your post to this thread on Chronic abdominal pain so you can learn about what has caused other peoples chronic abdominal pain and what has worked to treat it.

It must be so scary for you and your daughter that a reason for her pain is not being found.

Hoping that members like @mamacita @carolel @matt2134 @astaingegerdm and @sacrifice2121 will have some thoughts for you.

You mentioned that your daughter was having migraines prior to the abdominal pain. Is she still having them? Also, have you been able to find anything that betters or worsens the abdominal pain (food, drinks, standing/sitting)?

Hi, yes she still has migraines, topomax has decreased them she has on average 2 a month. As far as her abdominal pain nothing seems to alleviate the pain and it has no rhyme or reason as to severity.

@reliefforchild
I don’t know how old your daughter is, but weightloss is worrisome.
Has she been tested for celiac disease? Gluten intolerance. She seems to have had sufficient imaging of the abdomen. Celiac disease is not that uncommon and can appear with many different symptoms. We don’t know if they looked for this with upper and lower endoscopy.

They did test her for celiac during endoscopy it came back negative only tested positive for EOE.
My daughter is 13