Hi everyone,
Just wondering if anyone has had experience of endometriosis in or on the pancreas? I know it is possible but supposedly quite rare. I'm in the process of being referred to a specialist as I've moved and my old gynae wasn't a specialist. Just want to know if anyone has had experience of this as among other places I have near constant pain in my upper left side where the pancreas is.
Thanks in advance!
It is rare - but can I ask have you been on GnRH treatment recently or are you currently on GnrH drugs (Prostap Lupron Zoladex Decapeptyl etc)?
There are a handful of reported cases of these drugs possibly causing Pancreatitis.
So that may also be something to consider if it might apply to you.
I don't recall anyone previously mentioning having endo on or in the pancreas on this forum.
It is even rarer than the lung endo, but certainly there have been recorded cases since 1984.
Thanks for your long and thoughtful reply! No I haven't taken those drugs. I am trying to avoid them for as long as possible because I don't like the sound of the possible side effects. At the moment I'm getting by with a mirena coil and two lots of cerelle mini pill a day. I was bleeding heavily constantly before and now I am at a point where it has finally died down after a lot of trial and error. But still suffering pelvic, rectal and this upper left side pain and awful pain during sex so think my endo is still busying itself despite the improvements in bleeding.
I didn't know it was rarer than the lung endo, I have done some research recently and found the first recorded case was in 1984 too. Think there are about 7 official cases? But if it is cysts inside (from what I've read it seems to be), maybe it is missed on a routine lap. My other pain let up for a while put my upper left side never did.
My Mum had gall bladder stones but she was rolling around on the floor in agony so I don't think I have them.
I have this dull, itchy (sounds weird I know) pain in my left side under ribs all the time, and it gets worse after eating, can be very sharp sometimes but like a flash. If it was that strong all the time I would be rolling round on the floor. I also get a bit nauseous and hot sometimes and have problems with my bowel habits but was putting this down to endo elsewhere?
Oh I don't know. Maybe I have mild pancreatitis unrelated to endo or referred pain from somewhere else. So hard to tell with this disease.
It will probably be a while until I get my appointment but if I get any further I will let you know.
Thank so much for your reply!
Just did a search from the green bar search box and no one has yet mentioned endo pancreatitis.
Only pancreatitis as a complication from gall bladder stones - which is lot more common in the general population.
If you do unearth any interesting medical info online relating to endo+pancreas in the course of your enquiries, that may be useful to someone else on here in the future, can you post a link to the page please. There's bound to be another endo lady one day making the same journey of discovery as you are now.
Very sorry i can't offer more help - it is such a rare one, that I haven't really done much research in to it myself. I woudn't mind betting your Consultants are rather interested in your case. They do love out of the ordinary mysteries.
Hi! I was just doing some research and stumbled across your post. A month ago I underwent a distal pancreatectomy to remove a 4x4.4 cm mass from my pancreas. I finally found it after 2.5 years of intermittent pain in my upper left quadrant when my doc finally ordered an MRCP. The pathology came back recently showing that the cyst was made up of endometrial cells (just as you are asking about). From the research I have done, it is quite rare but obviously possible... The only lab results that were "off" in the last three years prior to surgery have been that my lipase and white blood cell count were generally a little high. By the way, the only reason the doctors looked at my pancreas is because I could tell and insisted that was where the pain was coming from. An MRCP or a CT will show if something is there. It was missed with an ultrasound. I hope you find faster resolution than I did!
Wow thanks for your reply!
So glad you got treated. Can I ask how your recovery has been? Can the pancreas function with part of it missing? Do you have endo elsewhere and if so in which parts?
From the papers I have read there wasn't much to tell from the blood tests either. A bit personal but were you experiencing any problems with bowel movements? Mine have been affected and may be the pancreas under strain.
Did you insist to your gp or endo specialist? I am waiting to be referred to a new specialist as I've moved so will definitely insist to them that pain is coming from there. But wondering if I should visit gp again in meantime to ask if it it could be something else. I assume all my pain is endo but could be normal pancreatitis. In which case I don't want to leave it brewing if you get me. Did tell gp I get upper left quadrant pain but he didn't mention pancreas. It's just me researching myself.
Did you feel very tired?
Sorry for the barrage of questions. Hope you're feeling well!
The recovery was a little more intense than anticipated because the surgery was planned to be laparoscopic, but I bled and they had to open me all the way up. I needed 3 blood transfusions, was in the ICU for 2 days, hospital for 5, had a JP drain for 3.5 weeks, and developed a minor infection after 3.5 weeks. All of that sounds worse than it was as I felt well enough to return to work (on light duty) after 3 weeks. You don't need the whole pancreas to have sufficient pancreatic function, but how much you need tends to vary between people. I don't have endometriosis elsewhere that I know of... since my symptoms started high in my abdomen, I was sent to a gastroenterologist. I did experience bowel problems when I had a "flare up" of pain. It was constipation, I felt horribly bloated, but wasn't making any gas, another good since that it was pancreas related. During those times, there was no such thing as enough sleep. Even when I wasn't in a "flare" I still have felt fatigued most everyday, but I tend toward insomnia as well. My gp was pretty much useless other than the referral to a gi specialist. On another note, we had no idea it was endometriosis going into the surgery. It looked like a serious cystic neoplasm on the scans. Also, they were able to save my spleen using a special technique. I can't say for sure, but I think it was called the Warshaw technique? Good luck!
I have very similar pain. I have had it for years now. It is not constant but happens at least several times a month, usually in "clusters." It is on the left side, just under my ribs. I was first told that it was due to my gall bladder even though the gall bladder is on the right side. I was then sent to a surgeon who told me that the pain couldn't possibly be related to gall stones and that I didn't need the surgery. He suggested the stones were pregnancy related (5 pregnancies in 4 years) and that they would resolve. That was in 2004. In 2012 I had my gall bladder out after the pain became so bad that I would pass out during attacks.
However, the pain is still here!! In June I had an attack so bad while visiting Times Square New York that I passed out on the sidewalk. Lovely. I was actually convinced that I must have pancreatitis caused by letting the gall bladder go for so long. But the pain isn't necessarily triggered by eating or drinking. I have had many tests - CT, MRI, ultrasound, blood work galore, upper endoscopy, etc. Nothing. According to all of it I'm fine. Of course I'm glad to be fine, but this made me crazy because there was no explanation for my pain. My GI was a real jerk and told me it was all in my head. Nice.
Finally, my GP asked me about menstrual issues about a week ago. I have a history of terrible cycles with heavy, heavy bleeding and bleeding between periods. It was so bad that I finally got an IUD. The IUD has stopped the bleeding, which I thought was my biggest concern. It never occurred to me that endometriosis could be causing my left side pain.
I always suspected I had endometriosis, as did my gyn doctors, but since I wasn't trying to get pregnant I didn't think there was much to be done about it. They actually suggested a lapro but I decided to try the IUD first since I have already had my children, and never in a million years did I think this growing pain could be related.
I am going in this week on the recommendation from my GP to see my gyn and discuss the possibility that endo is causing this awful pain. As weird as it sounds, I'm actually hoping it IS endometriosis-related pain because then at least I will know I'm not crazy and imaging this awful pain.
How are you doing??? Did you see the specialist? What was the result?
Good luck!! Hope the pain is gone/on its way out!
Hi Kath77,
I found your post searching on internet. It is 2 years old, and I am wondering how are you doing now? Did you get rid of that pain?
I also have the same pain on the left side, under my ribs. USG looks normal. But I think it is endometriosis because lately the pain becomes worse during my periods. I am waiting for a hysterectomy, as I am almost 49 now, I am happy to do that and finally get rid of so much pain as possible.
I hope you are doing just fine now.
Me too... exactly the same, currently in hospital in agony, apparently it's the gas pain from the lap but I had the pain before the lap....
This is quite interesting...
Hi, I think it’s entirely possible, I get same pain, like I’ve got bruised ribs, that worsens around period and ovulation. Does your pain also get worse when you eat?
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