Hi everyone, please bear with me as this may be a long post, but I want to go from start to finish so my input is thorough.
My name is Amy, I’m 32 and I suffer with acute pancreatitis on a monthly basis - as the pancreatitis goes away and can sometimes lie dormant, it is not classed as chronic.
My pancreatitis ALWAYS coincides with a drop in oestrogen, whether that be before my period or just after ovulation when we as women have our first drop. I manage my illness at home with morphine and codeine and have had many, many bouts of this now that it is pretty much normal life for me. Pancreatitis used to frighten me but it no longer gives me that fear. Some bouts are horrendously painful, as most of you will probably understand, some pass with only mild pain relief needed - I can’t call how bad a bout is going to be until it happens. Some months I won’t get it and I can go a few months without, but without fail, when I do get it, it’s always around the oestrogen and hormonal fluctuation, without fail.
However, my story doesn’t start and end there…
I first had pancreatitis aged 27; I’d had a baby 3 weeks prior to this attack. The pancreatitis was extremely severe necrotising pancreatitis, with my amylase level hitting upwards of 4,500 and my CRP hitting around 500 (if I remember rightly). I was extremely poorly and also suffered from a pulmonary embolism due to this attack. It was thought that 40% of my pancreas had died and I had 2x CT scans within a week. The last CT scan showed my pancreas hadn’t died but I was left with a cyst of fluid at the head. I wasn’t told about the cyst of fluid until WEEKS later, and only when I pressed. The hospital I was in discharged me with the notion that it was ‘just one of those things’, despite me asking multiple times if it could have happened because I’ve just had a baby. No was always my answer.
5 weeks later and I was back in with another flare up, a lower amylase level of around 1200 this time. A short stay of around 3/4 nights, another CT scan and an MRI, where I was then told I had a cyst that hadn’t changed since my last admission and I would be referred to a specialist unit to have this cyst drained. I was menstruating at this point.
2 weeks later I turned yellow.
2 weeks after that I had an endoscopic ultrasound to decide the best course of action to get rid of this cyst that was causing my jaundice, and a week after that I was diagnosed with stage 3 pancreatic cancer at age 27. I don’t want this bit of information to frighten anyone on here - my case is extremely, extremely rare and after recalling all of my notes, its nigh on certain that my cancer was caused due to the cyst being left untreated and me undergoing multiple CT scans in a short amount of time on a body that was post partum - it looks like the radium turned the cyst cancerous after such a serious bout of initial pancreatitis. My cancer was very much a cause and effect kind of deal and in a way, it makes me lucky that I can make that correlation.
Since then, I’ve had 22 sessions of chemotherapy and a Whipples Procedure. I am completely cancer free with absolutely no evidence of disease 4 years on and completely and perfectly normal blood results in terms of liver markers, FBC, CA19-9 cancer marker and everything else. Very grateful.
However, I still get pancreatitis due to my hormones and after being under such a specialised team for a long time, who are absolutely phenomenal at what they do, it has surprised me that little is known about the link between hormones and pancreatitis. When I had my first flare up post whipples, I had finished my chemotherapy and we worried that it may be a sign of reoccurrence. I had an MRI scan, full blood screen - all perfectly normal and my surgery was perfectly in tact! I was also menstruating with this flare up.
When I met my oncologist, who is a professor in Pancreatic Cancer and disease, he did indeed tell me that having pancreatitis when you are postpartum is a phenomenon that happens and is more common than we think. When I mentioned the correlation of my mensturation cycle seeming to fall in with my pancreatitis, he said he would do some research for me. He spoke to his colleague in Germany who confirmed it is definitely something they have noticed as the pancreas is oestrogen respondent, and he’d actually written a paper on it.
Since all of this craziness of the last 4 years, I’ve met a couple of women who also had postpartum pancreatitis, but only ever read a few stories of women who have had it in correlation to menstruation and seen a few notes on NICE paperwork.
So, my question after that long winded post is this - do any women notice that their flares coincide with certain fluctuations of the menstrual cycle? I would be interested in hearing your stories as in the future, I would like to put some literature together on this as I think it’s incredibly important for women dealing with pancreatitis moving forward, as well as important to inform health professionals in a manner that is more than just ambiguous.
If you made it this far - thanks for reading!
Amy
i live in germany, do you maybe know the name of the doctor in germany?