I suffered from endometreosis before i went through the menopause.24yr sufferingchronic pancreatitis

Posted , 2 users are following.

Hi all, please can anyone help me on this. I have suffered from chronic pancreatitis for 24 yrs during my 20's before early menoapause(38) i had suffered with severe endometreosis,, after investigations and procedures i continued to be hospitalised every month just before a period with severe acute pancreatitis. Now 24 years later and with chronic pancreatitis i am now taking acute attacks every month like i am still menstruating. Starts with the pain at the lower part of my stomach. it's excruciating and then the pancreatitis happens right in my gut just like all them years ago. I have mentioned this to doctors and specialist but they feel no connection. I am convinced this edometreosis is flaring up just before i have an attack of pancreatitis. Any other females feel this is happening to them. Thanks in advance i do appreciate your replies.

0 likes, 13 replies

Report / Delete

13 Replies

  • Posted

    I have endometrosis and CP as well. I had to have my parts removed completely and have the endo carterized numerous times. The stress of the endo can bring on a CP attack. I have been fortunate to keep the endo pain down but the CP is horrible. I will have my pancreas removed in August and I am only 39. I had my female parts removed when I was 25. Most doctors do not know endometrisis can spread, I suggest you make sure you have your pancreas specialist and gyno speak to one another to make sure it hasn't spread to the bladder or farther since it's micro and won't show on tests. I deal with about 10 different medical conditions and they all effect one another.

    Report / Delete Reply
    • Posted

      WOW Shortie39 so sorry for what you've been through and are still going through. 25 YOU HAD THIS DONE AND YOUR ONLY 39 my heart goes out to you, Your now having your pancreas removed, is the endo in your pancreas? why are they now removing this may i ask. Have you had CP since you've had endo? what procedures did they do for your CP? CAN'T BELIEVE YOUR GOING THROUGH ALL OF THIS. I started at 25 and now 54 my god it's been trying and bloody hard.

      Yes i told my doctor all along that it was this but they kept saying no, no, not at all. I had several pneumothorax and an operation to fix my lung,i told them it was catamenial which you probably know is endo on the lungs but they still said no. It's a bloody hard fight this CP but also harder to convince these medical people that you know something is going on with you. What are your other medical problems if you don't mind me asking? Your a strong woman let me say . Thanks for your message i do appreciate it. Take Care

      Report / Delete Reply
    • Posted

      I was born with two pancreatic ducts that never fused together which is called Pancreas Divisium. Due to the two ducts it caused CP. All my life I was in/out of the hospital but the doctors never knew what was wrong. They knew about the endo, Complex Regional Pain Syndrome, herniated discs, Hashimotos (thyroid disease) but my blood never showed pancreas related problems. They admitted me because my liver would always show something. Back in 2014, I was having severe pain so my gyno was going to carterize the endo again. When I was under, they found all my intestines adhered together plus more endo because as you're aware it grows back. After that surgery I was never the same!! I had trouble eating, hair falling out, pain after eating so severe I was scared to eat. I drastically loss 40-50 pounds and I kept insisting on more tests. Finally the MRCP revealed my two ducts. My GI doctor still thought it was IBS so I asked for a pancreas specialist. I have went through 10 ERCPs to try and widen my ducts but they can also be used as other treatment for CP. Unfortunately, for me it's not helping and creates scar tissue which causes my ducts to clog up more and cause more attacks. My only solution is to have my pancreas removed. Once removed I will become diabetic and be dependent upon digestive enzymes. The CP has cause me kidney problems, slower digestion and I am high risk going under for surgery because of my nerve disease. I've had probably 30 surgeries but I've accepted everything which helps me to not stress. Stress and foods are triggers for me, I try my hardest to stay clear of both. I stay on a low fat/carb diet and distract my mind when I'm in a ton of pain.

      Report / Delete Reply
    • Posted

      Once again Shortie79 i take my hat off to you and i'm not being patronising . To go through all that surgery and your still fighting to get better is a remarkable thing. I have been speaking to people online for years about this illness and everything that comes with it and i've never came across someone like yourself who has gone and still going through all of your health problems. If you don't mind me asking you some things about your health and if you feel you don't want to say anything else about it i totally understand. I just think if you can find out one small bit of information about an illness it can help hugely. Stress i believe is a huge part in any illness and to be honest how are we not meant to be stressed when we're going through this.

      Do you feel this is your only option to have the pancreas removed now? I have came across about half a dozen who have had this operation and they say it's the best thing they've done. Although they've ended up diabetic and i think it's remarkable. Although diabetes is a big thing but at least you can control it. What do you take to control your pain? How do you feel the care side of it is with doctors.specialists,when your being admitted, to how the nurses treat you? Can i also ask how your friends and family cope with your illnesses and if you feel they truly understand everything about what your going through. Well i better stop there but so much to ask you although like i said if it's too much i totally understand you not answering. Thank you for messaging back.

      Report / Delete Reply
    • Posted

      I live in California and the emergency doctors in my area treat me like a drug addict before they realize what I have been through. They see what medications I am on and automatically judge me. In a way it's sad but it also makes me stronger. I take dilaudid for pain but my insurance decided to stop covering all my medication, therefore I deal with a lot more pain now. Not everyone understands what I deal with regarding friends/family. I have two sons which literally have to take care of me some days and it breaks my heart because it's suppose to be the other way around. My husband is supportive especially after he had surgery for the first time. I've gone through so many surgeries they don't usually scare me but this one will take 8-12 hours and that's intimidating. The chief of surgery is doing it so it makes me feel better. I actually have to travel to get it done, there's no specialist in my area who can do it or is knowleable in the pancreas. I have faith in the hospital and nurses they're all very polite and always answer my questions. I tend to do a lot of research before making decisions because I used to be a paralegal but now I'm unable to work. I always try and help others if I can because it took so long for my diagnosis and the amount of pain I went through was almost unbearable. If I can prevent a person from going through it, I will. Ask whatever questions you desire.

      Report / Delete Reply
    • Posted

      Hi again Shortie79 i hope you don't think i'm stalking you now haha Honestly been ill for two weeks with a day or two in between feeling a bit better so have been sleeping loads but now at the point i can't sleep so been online all night watching tv. I never intended to go into the patient site but i was just wanting to find out about the endometreosis and pancreatitis because it is something i need to get looked at now.

      Anyway i'm so glad you messaged me about your story. You really made me sit up and think when i read about you. I'm here in Glasgow nothing like California haha was lucky to have been though with some of my family and my daughter who was 14mths at the time and is now 29.

      Sorry back onto yourself, now i know your a mother which is amazing because some women can't have kids with endometreosis as you know. I couldn't have anymore after i had my daughter but i was very lucky in that respect i had one child. How old are your boys may i ask? must be so hard for them to be taking care of you at times but i believe that will make them stronger boys and treat others better, don't you think? My daughter took care of me from 5yrs old as i said she is 29 with a family of her own now. The admiration i have for her i can't explain.

      Yes the emergency doctors are like that with me, i never go into hospital unless it's the last resort and i believe i have done more harm than good by doing that. Once when i was admitted i waited 6hrs for pain relief it was a nightmare and how i lasted that long i do not know. When i was admitted early on in my illness doctors and nurses where brilliant but as the years have passed the compassion is gone but thats because our NHS is not the same.

      Glad to here your husband is supportive as he knows what it's like to have surgery,you having all those surgeries he must be in AWE of you. Do you have your date for August? 8-10 hours is a long time but something like that you wouldn't want it done any other way and if the big chief is doing it that's the best thing knowing that. How far have you to travel for this? What his name because i have heard of a doctor in the States, i think it was the mayo clinic or am i away out on that one. Research is the best thing for any illness and thats a bonus that you used to be a paralegal. You sound like an amazing person thinking about helping others when your in so much pain yourself. You will get through this because your strong and you have the support you need especially your husband and kids and you have faith in the medical team. Thankyou very much. Take Care chat soon as i must go for some more medication...................

      Report / Delete Reply
    • Posted

      My surgery is scheduled for August 1st. The Mayo Clinic is in a different state. I technically only have to travel about 50 miles to San Francisco but with traffic it takes me about two hours to get there. If there’s heavy traffic then it’ll take three hours. There’s only two hospitals in CA that can perform this surgery and it’s at UCSF or Stanford. I go to UCSF because Stanford is further away. I don’t think I can post names on here because they delete the entire comment. However you can look up the Chief of surgery at UCSF and his last name starts with an “H”. I don’t go the the emergency anymore because they cannot treat me. My local emergency doesn’t have the technology to treat the pancreas and if I go for pain relief then I’m really treated like a drug addict. It’s pretty sad but I have learned to cope at home. Anytime I feel an attack coming on I rest my pancreas which really just means no eating and staying hydrated. After a couple days I slowly incorporate bland food and if there’s still pain then I resume to the no eating. Once I am able to eat I tend to eat oranges because they’re natural anti-inflammatories but I cannot drink orange juice (probably too much sugar). As for my kids they’re 17&18 now … but when all this began they were 12&13 years old. I was so ill they really thought I was going to die but I made it through and I plan to continue my journey. I was 21 and 23 when I had my kids. I couldn’t have any more afterwards. I had to have my tubes tied after my last son. With my first son, during birth my pelvis separated and then I got pregnant shortly thereafter and it didn’t have time to heal so I was in a wheelchair. If I got pregnant again I would’ve been in a wheelchair permanently. Two were enough since they’re only 13 months apart LOL. I lost my dad to cancer in 2017 but he would tell me about forums and how they helped him. Once I found this forum it really helped me. It’s hard when no one around you understands the actual pain you suffer but when you can read other people’s stories and you know your not alone, I tend to feel peace. Everyone will be different but we’re all suffering. Once my pancreas is removed then I’ll be able to concentrate on my other medical issues and will have more strength. All I want is to watch my youngest son graduate high school and if I reach that goal I’ll be a happy mom.

      Report / Delete Reply
    • Posted

      Hi Shortie79 Sorry to hear about your dad. After reading your message i can't believe what you've been through especially when you were pregnant, must have been so traumatic for you. In a wheelchair with a baby wow that must have been so hard to deal with. Your boys must be so proud of you and you of them of course. I was the same when i got ill at first, i would say if i see my daughter to 18 then that will make me a happy woman lo and behold i'm still here and she's 29 now with a boy and a girl of her own, i'm very, very, lucky.

      I can't believe when you get bad you can't go to emergency, that is shocking. Does your medication help with all your illnesses? Are you constantly in bed with your illnesses? Do you have constant pain everyday with your health? What are the types of food you eat on a daily basis? It does get a bit much as food is the centre of everything and we can't eat what we want and have to watch everything we eat.

      August 1st is not that far away. How do you feel about everything if you don't mind me asking? The way you come across you seem very positive and just want to get this over and done with and then be able to deal with your other illnesses. Your husband must be a strong guy aswell especially seeing his wife go through everything and nothing he can do for you. My daughters dad just couldn't deal with things and we split after 15yrs, to be honest it was for the best. So when you get someone who is so supportive it is amazing.

      I know what your saying when friends and family don't understand. I get the feeling at times people think i'm at it,do you get what i'm saying. Or when your ill they just expect you to pick yourself up quickly and be back to normal,it's so frustrating. I've lost all my friends which i know sounds sad but because you are constantly ill and cancelling things they don't seem to get it. To be honest i need all my strength to try and have time with my grandkids so i don't really care anymore. I think in a way our illnesses make us stronger but probably not for the right reasons. Glad you get some peace of mind by being on the forum. You will also help others with what your going through and how you deal with things. I think your such a strong person especially what you've gone through and are now going through,i take my hat off to you. You will see BOTH your sons graduate. Thanks.

      Report / Delete Reply
    • Posted

      I’m on about 10 different medications for all my illnesses and unfortunately when I’m having an attack nothing really helps. I’ve had to go get ketamine in order to get some relief but that also only lasts about two hours. I’m in pain everyday but usually I try to cope and do whatever I can. If it’s dishes or laundry I still try and get something accomplished each day for my sanity. There’s some days where I literally cannot get out of bed and either my husband or kids make me food and bring it to my room. When I’m having an attack I usually cannot eat. I always keep Ensure shakes in my fridge and chicken broth. Lately I’ve been craving carbs so I usually cook a lot of pasta with some type of veggie. My pancreas specialist advised me to eat six small meals rather than three big ones because they’re easier to digest. I also substitute some things like applesauce instead of apples and frozen vegetables instead of raw. These are all recommendations from my specialist and they have worked for me. I don’t eat too much red meat unless I’m seriously craving it because it’s harder for me to digest. I do eat chicken and ground turkey. I also eat a lot of oranges but I don’t drink juice. In the morning I’ll either eat cream or wheat or cereal with coffee. I’ll snack throughout the day and then pasta at night. I have been trying to gain weight because I know I’ll lose weight after my surgery. I try and stay as positive as possible and keep my surroundings positive too. I lost a lot of friends with my medical issues too but they weren’t really my friends if they chose not to be there for me when I needed them the most. I have found trying to be more active is hard at first but it actually does the body good. It helps me with circulation and my sanity. My sons admire what I strive to do but I’m really honest with them. I don’t hold anything back and I ask the same from them. I always try to learn something new everyday.

      Report / Delete Reply
    • Posted

      Shortie79, i'm also taking about the same amount of medication. I take Longtec and Shortec (Pethidine and oralmorph)before that but also didn't help for the pancreatitis, i end up with a water bottle and burn my stomach because i have it that hot but i think it's all in the mind that it works a bit. Also take sleeping tablets and try and sleep it off but very hard like you know. Ketamine is that not a horse tranquiliser? it's bad that it only works for a few hours. Does it knock you out and does it help you to sleep? When i'm in pain i can't even walk far i'm hunched over and it's like a marathon to get to the toilet for me. I just want to be left on my own and i push everyone away because i feel they can't take the pain away so whats the point them being near me. I also feel i'm constantly apologising to people about being ill and it is stressful. 6 meals are the best but i find that impossible if i'm hungry also after an attack i just want to eat loads and that is a no, no. Do you crave chocolate or sweets? i find it so hard not to eat some as i've always had a sweet tooth but i know it's dangerous for me. Do you tend to lose weight very easily when you have an attack. I have also got ensure but i started to get quite sickly with them after a few weeks.

      Positivity is very hard when your ill all the time and i know it's how you need to be but i find it very hard to get motivated never mind be positive. I find as the years go on my whole mindset is just so negative and i hate that because i used to be able to deal with this easier at the beginning but 24 yrs later i find it so hard. My grandkids give me a lot of happiness and joy and they remind me why i need to stay as healthy as possible. You seem such a positive person and thats what you need. Your boys and husband seem to be very understanding with you. They definitely are amazing people and your lucky to have that support. Do you get to spend days out with them at any time or is that very rare? Yes i agree your friends were not friends if they chose not to be there for you during your bad times. It does get you very angry though knowing people who you thought were friends can turn their backs on you because your ill,very sad.

      I said to my doctor that i feel the endometreosis is flaring up every month but he insists after the menopause it's not active and can't cause pain. I't wouldn't cause pancreatitis either I was told. I have adhesions all over aswell, very bad on my bowel. I know something else is going on now because the pain can be excrutiating at the bottom of my stomach as if someone is putting there hand in my stomach twisting my insides then i end up with an attack of pancreatitis. I think we all know our own bodies aswell and know when something else is going on. Do you get depressed? Your sanity is more than tested with these illnesses. Hope you've had a good weekend,Take Care.

      Report / Delete Reply
    • Posted

      Ketamine is a horse tranquilizer but it’s only given at the hospital, they don’t give it as a prescription and I’ve only had it twice in really horrible attacks. I don’t like it because it makes you hallucinate and you cannot process anything while it’s being administered. It takes about five minutes before you can comprehend anything. Since I have to travel to an emergency for treatment for my pancreas the local emergency will give me ketamine because I’m already on the pain medication they would inject. I have insomnia so I’m also on sleeping medication and since I am already going through menopause since 2013, it’s very difficult to sleep. I take Xanax to help me with sleeping, I am on a low dose especially because it’s dangerous to mix with other medication.

      When I’m in a lot of pain I tell my family. Im not always positive and sometimes certain medication especially Baclofen will make me kind of mean. I don’t like being mean so I warn them in advance. Some days anything can set me off and put me in a foul mood but I try really hard not to take it out on anyone however, my patience is slim. When I’m really sick I’ll lose weight quickly. I either have to take digestive enzymes or Reglan because I suffer from gastroparesis (slow digestion). The enzymes can help with pain if you’re not taking them. Lately I’ve had a sweet tooth but I have to be careful since sometimes it’ll cause more harm to my tummy. There are some days where I’m not hungry at all and literally need to force myself to eat. To be honest I’ll forget to eat and that’s the only thing that scares me about becoming diabetic. Ensure is good but it can start to bloat your stomach. I only drink two a day because it’s not recommended to have more than two a day and I only drink them when I cannot eat.

      As for the endometriosis, here in the States it’s different. I’m on hormone patches due to my age. Im not allowed to eat soy products because it will affect my endometriosis and my endometriosis did grow after being in menopause. If you don’t keep your hormones at a steady level that’ll make it grow quickly.

      The pancreatic pain will hunch me over and I cannot do anything. I have no energy or desire to do anything. It does make me depressed but I try to think of other things I can possibly get done when I feel better. I try not to dwell on my current issues and look past the point of my pain. It doesn’t always work but sometimes it does.

      I try to spend time with my family but there’s many days I’m unable to do anything. Both my kids understand and they work with me. It’s harder when people don’t understand what you’re dealing with but my children have had to pick me up off the ground and put me in bed. They know it’s a struggle each day but each day I try and communicate with them. I’m brutally honest with my family and they’re honest with me.

      My stomach gets really hot like someone is stabbing me with something from a fire and twisting it inside. I take Tylenol and use heat packs to help me. Heat works for my body but sometimes ice works for others. With my nerve disease I cannot use cold items on my body. I also stay away from corn due to my nerve disease as it aggravates the disease. You will always have me to discuss whatever you need too. Hope you feel better soon.

      Report / Delete Reply
    • Posted

      Shortie79

      Hi hope this finds you as well as can be expected considering what your going through. Not been on here for a while. I have been spending some time with my grandkids as not had an acute attack for weeks although still had pain everyday and dealing with it as usual but trying to stay focused and positive. I have thought about you and your family. These past few months must have been so worrying for you. I know what is ahead for you. Just a week to go now . I know your a very strong person but things will be going through your mind but that is understandable. I am here anytime if you need to chat. Afterwards if you need any help with anything i am also here. Take Care Chat Soon.

      Report / Delete Reply

Report or request deletion

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.

newnav-down newnav-up