Possible New Diagnosis

[chicidichic]

Hey everyone! Let me start from the beginning. I started having stomach issues in Demeber of 2013. Took one year and many negative tests for gall bladder problems to finally get my gallbladder taken out in November 2014. I am one of those weird people who have negative tests like that  Surgeon said my gallbladder was inflamed. I was still having pains up in that area and all down the right side of my stomach along with gastrointestinal upset. I stopped my birth control back in January 2015 because my husband and I wanted to start trying for another baby. I started having weird pains down low on my right side along with some nausea. Pain would be there especially after sitting still for a while and getting up. I would writhe in pain. Started having frequent nausea and cramping during and between periods. Back in March 2015, I ended up in the ER with severe pain in my lower right side and a very very nauseous feeling. We thought it was my appendix, but all test results said no. ER doctor sent me home with pain pills. Pain never went away. Would become very severe at times and just make me feel awful. Still had gastrointestinal upset as well. Finally decided to make an appointment with the gyno. He did an ultrasound and found no cysts. He did find I have a tilted and acruate uterus. He also told me all my symptoms strongly point to endometriosis and the only way to find out is to have laporoscopy. He prescribed me pain pills to help with the pain, which I don't take unless I absolutely have to. Anyways, I thought I could deal with the pain, but it's there and pretty chronic. Anyone else have similar symptoms when they got diagnosed. I guess I am just scared and need some more information about it. I am a teacher and won't be able to have the laporoscopy until after school gets out. He said I could get pregnant or get back on birth control. He also told me a lot of times it doesn'the show up while you're on birth control, which is probably why I didn't start having the pain until after January. Anyways, sorry this is so long. Thanks for reading!

[chicidichic]

Wow! Your stories are unbelievable, and I appreciate you guys sharing them! I am so sorry that you guys have had to go through all that!  I definitely don't want to have to go through that many surgerie. Having my gallbladder out was bad enough, and now I am looking at laporoscopy. I have heard and read a lot about finding an endometriosis specialist, so I will for sure look into that! I am hoping I am still able to have babies. I would like at least one more!  Thank you guys so much again. I had heard of endometriosis before but never really knew what it was until I was told I might have it. The unknown is scary, and of course everything you read on the Internet about any medical issue just scares you even more! As soon as I have any new developments, I will let you guys know! This pain is ridiculous!

[frustrated34]

I had the same thing with the lower right sided pain. They sent me home with pain meds and I was back less than 24hrs later. They admitted me for 4 days worth of testing and scoping from top and bottom. Still found nothing so they ordered a psych consult like it was all in my head. After being discharged with more pain meds I demanded a referral to a surgeon and from there demanded the surgery and they did find endo! It only took 16yrs to get it diagnosed. I had to be my own advocate to get anything done. Sometimes you have to push the docs. I am a nurse and they still treated me like I am stupid. Don't be afraid to stand up for yourself. The worst that happens is that they don't find anything and you have to figure out where to go from there.

[ipurr2]

I am sorry to hear of your pain! Yes this sounds VERY familiar...I had severe pain from my endometriosis to the point of fetal position many times...unfortunately over 20 years ago Dr.'s had no clue and I was dismissed often...endometriosis was never even mentioned...I was the one who after 13 years of trying to figure out what my pain was..found it...went in asked for a diagnostic laparoscopy...Had done vaginal ultrasound...confirmed tilted uterus...anyway when I requested the lap...dr. made me do ultrasound and it showed nothing...so he said "I doubt you have it" but when he went in it was stage 4 and so bad He thought my appendix had burst because of all the scarring and how my organs were glued together, but my appendix was fine under all the mess) he just closed me up and recommended hysterectomy with ovaries removed...well I was so desperate to be out of pain I would have given him my soul...so I had the second surgery 1 month later ~ open abdominal hysterectomy/BSO...which threw me into instant menopause and it was horrible...I was either suicidal or a raging maniac...took me about a year to find a slight normalcy but this changed me forever...by the time I found a dr. to get my hrt to balance me I was having pain again...not the monthly crippling pain, but constant pain...So again..lots of tests...I was bleeding rectally so of course I had all gastro tests known to God and man...finally I found an endometriosis specialist who went in to take a look...endo was still growing away...without my female organs and though many may say it was the hrt...it wasn't as research is showing that endometriosis grows it's own nerve supply and estrogen supply so no need to take it from the hrt...it will start with building it's little factory regardless...so I had the surgery with the endometriosis and by now it was up my ureters and on my bladder, he removed my appendix and pathology showed endometriosis...my organs had glued together again (frozen pelvis) my colon had attached to my side body...so then I felt pretty good for a while,but because when they removed my uterus before they knew to tack up the vaginal cuff...I developed pelvic organ prolapse of EVERYTHING that could fall...did...I also had rectal intussusception...so I found an endometriosis specialist who was also a urogynecologist who would go in excise (cut out) any endo still lurking and pull up my organs with mesh...the surgery was 6.5 hours long and I lost 1/2 my colon to endometriosis...but was doing so much better pain wise...unfortunately then I was having gallbladder pain and although all tests came back normal as they ALWAYS do...I had it removed ...no stones...no sludge...just adhesion's holding it down causing to to malfunction and become necrotic...sure enough...endometriosis...So now 20+ years of suffering and 8 surgeries in my abdomen/pelvic floor...I am doing better but will NEVER be well because the first surgeon I went to was a gyn...not an endometriosis specialist...if we have cancer we don't go to a GP we see an oncologist...if we have endometriosis we MUST INSIST on seeing an endometriosis excision specialist if we want to get our life back or the stories turn out more like mine...so if you and your gyn suspect endo...if you go to a specialist they won't just diagnose it they will cut it out at the same time...you will keep your organs and can have a baby if that is what you want...this was all taken from me...because the endometriosis specialists were rarely mentioned...Many will review your medical records for free...so while waiting for school to be finished for the year...I would be seeking an endometriosis excision specialist so that you can hopefully have one surgery and have your life back...if you would like help finding a surgeon in your area let me know where you live (city/state or country) my first endometriosis specialist was 4 hours round trip...second one I flew several states away...and believe me...it was worth it...I just wish I had found them before all the damage had been done in my pelvis! So PLEASE see a specialist!

[owen357]

First I must tell you I know nothing about endometriosis but I when I read in the beginning about you thinking it might be your appendix but all test results said no it reminded my of my son. We for about 6yrs he would have high fevers pains and sometimes he would be nauseous and sometimes he would through up. In 2008 he was 2 he wasn't feeling well tummy pains could tell where he was only 2 his fever spiked from 101.2 (gave him Tylenol) to 104.8 with in an hour I gave him ibuprofen and ran him to the er they ran all sorts of tests including an ultrasound found nothing he was in there for a week cause his fever wouldn't stay down when we left he was still having fevers and pain but they decided to send him home because they couldn't find anything actually wrong with him from then on he would have a fever  and pain every month sometimes he would have a fever more then once  every time I took him in they found nothing then in September of last year 2014  I had to take him to an after hours clinic he was bad and for some reason my gut told me not to give him the  ibuprofen for his fever when they saw they immediately sent him to the er where they did an ultra sound and found his appendix was swollen we  had to take an ambulance to Tacoma Mary bridge hospital they gave him meds and stuff and he was in surgery for 3 hrs. In the morning when the doc came to see him he said he didn't think it was his appendix because when the went in it looked normal but the took it out any ways etc etc he said he would be back in a couple hours to check on how my son was doing and when he did ray (my son) was great no pain no nothing Dr said that he went over my sons results and it sure enough was his appendix and looking at my done now proved it and that that the appendix was probably also the reason for all of his fevers the past years and that the meds probably took the swelling down this is why they never saw it because things like ibuprofen, Tylenol and others aren't just for fevers but for swelling to. Since then he hasn't had pain there or any fevers unless he really gets sick. Anyways sorry this was long but really wanted to let you know that just because the results for the appendix came back as a no doesn't mean they were right. Could just be because the swelling went down do to meds....