Linear endocrine cells hyperplasia & Autoimmune Gastritis

Hi,
its so good to meet someone going through the same thing. were you a patient a mayo? i'm assuming you have to be to access their portal but i know how good they are there so thats great! i live in new hampshire and first it was my gallbladder but it took someone 6 months to tell me thats what they thought was wrong with me. i did have a excellent surgeon, i remember her telling me at my pre-op appointment i had gallbladder symptoms and some symtons that werent gallbladder related but at that point i was still clueless. after surgery i was still sick so she referred me to their GI dept. mind you this is the biggest hospital in new hampshire and used to be referred to as NH's best hospital and i always had good experiences there but many eople have told me how dissatisfied they were amoung other things. anyway i went through a smartpill and a hydrogen breath test both normal. my endoscope was this past june 2. this is when things went really downhill. first i was told i would only have mild sedation, no anestesia. i begged for anestesia. the dr made these wacky reasons why it wasnt possible. i was terrified and upset and i just thought the biggest hospital in the state doesnt have enough anestesia? so i only went through with it because i knew i really needed it done. ell the mild sedation did nothing for me. i literally felt everything to the point i was choking and gagging on the hose. a week later i got a letter on my portal. i did have biopsies. it said no infection. negetive for celiac and h plori also no dypepsia. but i dont know if you had this if you did maybe you could explain it. it said "linear endrocine cell hyperplasia with the possibility of autoimmune gastritis. the only comment from the dr was it was nothing to be concerned about but did require follow up. of course i was scared. i had no idea what it meant but i thought it was concerning. right after i called them asked to speak to the dr and i told them why i wanted to speak to him. they refused. about a month later you know i heard nothing from them at all so i called to try to speak to the head of the motility dept.i left a message kept calling nothing. then i receive a call from a "GI manager" which was useless but sorry this is so long. obviously i knew i needed to go somewhere else. but this place was dartmouth hitcock in Lebanon, NH and since NH did me wrong mostly for over a year so i felt i had no choice but to go to Boston. my appt. i couldnt get in until november 10 at mass general which is a top hospital in the country im looking forward to it but i do wonder and worry if anything could change between june and november. its scares me in the back of my mind. i wish i could put my e-mail her for you but i know thats not allowed but would love to talk to you again. 😉

@eileenb1022

I'm wondering how you are doing. Any new evaluations or diagnostic tests? Please post an update as you are comfortable doing so. I look forward to hearing from you.

Hi Teresa,
good tohear from you. i actually do. unrelated though to the GI which is still november 10. i see my new pcp tomorrow in boston. i also see a urologist sept 27 for recurrent uti's i have been dealing with those since last thanksgiving. my gyn here locally not much help. i'm also dealing with might or might not have lichen scholus. that is terrible and unbearable and gyn doesnt want to even do a biopsy until november she just prescribed some steroid cream. not too happy but i feel i will get somewhere finally tomorrow with this pcp i have been told good things about this place. its called one medical and they have offices across the country. fingers crossed! how are you doing? your always so sweet to me and comforting. alot going on hard to keep my health anxiety at bay but trying to be proactive.

@eileenb1022

Good to hear from you. It sounds as if you are making progress in putting together a medical team that you are comfortable with. I hope that your new PCP is just what you are looking for. In my experience, a good PCP can put together a lot of information and track what is being done by other specialists.

For your information, I found an article on Mayo Clinic's website which might be helpful to you,
_Lichen sclerosus
https://www.mayoclinic.org/diseases-conditions/lichen-sclerosus/diagnosis-treatment/drc-20374452
I hope this gives you some background when you meet with the new Gyn.

I would enjoy hearing from you after your appointment tomorrow. Will you post with an update?

Hi Teresa,
good tohear from you. i actually do. unrelated though to the GI which is still november 10. i see my new pcp tomorrow in boston. i also see a urologist sept 27 for recurrent uti's i have been dealing with those since last thanksgiving. my gyn here locally not much help. i'm also dealing with might or might not have lichen scholus. that is terrible and unbearable and gyn doesnt want to even do a biopsy until november she just prescribed some steroid cream. not too happy but i feel i will get somewhere finally tomorrow with this pcp i have been told good things about this place. its called one medical and they have offices across the country. fingers crossed! how are you doing? your always so sweet to me and comforting. alot going on hard to keep my health anxiety at bay but trying to be proactive.

Hi @eileenb1022

As you will be seeing a lot of new doctors in the near future, I thought that this video from Mayo Clinic might be helpful to you. It is about meeting a new doctor.

- Tips on How to Get Off to the Best Start With a New Specialist:
https://connect.mayoclinic.org/discussion/your-tips-on-how-to-get-off-to-the-best-start-with-a-new-specialist/
Will you take a look at it and let me know what you think?

Hi Teresa,
On my way back
Just got out of Boston my pcp was very good , very smart. I didn't want to overload her with everything but I was able to get some things accomplished. First my lumberspine issue she is referring me to pt. She wants me to try that first and see if that helps so I'm glad about that. She did with no hesitation refer me to gyn at mass general and the vulver clinic. We talked about what eas going on down there She offered to examine me so I said yes and she said she saw no yeast or anything like that but she did see that painful spot in the back she said it looked like a diaper tash and was gonna call in some zinc ointment as far as the other ointments she asked me to message her what they were so she could tell me what she thought. I asked her not to overload her but when I message her if it was OK to briefly explain my gi situation she said yes she also said because I have a lot of complex issues and she is only a physician assistant she might refer me to one of their physicians so I said ok and I know I'm dealing with a lot. UT I will say I was very pleased with her. So basically I'm just hoping to hear soon from the gyn department she referred me to. I'm headed home now. Been a long day. Trying to find and navigate through Boston was crazy
Lol

I'm glad that your appointment went well today, @eileenb1022!