Endometriosis Support Group
Endometriosis is a common medical condition where the tissue lining the uterus is found outside of the uterus, typically affecting other organs in the pelvis. The condition can lead to serious health problems, primarily pain and infertility. A major symptom of endometriosis is pain, mostly in the lower abdomen, lower back, and pelvic area.
My doctor is nuts. I saw her yesterday to give her an update on my pain levels and what not. I told her how my stomach is on fire every morning and also how (this might be TMI) if I have to go #2 it is really painful sometimes or if I have to wait to go #1 it is painful as well. She told me there is no way that is endo and said I probably have an ulcer AND IBS!! WTF? I am 22 years old and healthy except for Endo-I find it hard to believe that the second the Endo popped up this year I also got 2 other health issues!! Has anyone else had this issue with their doctors? If so, how can I tell her she is wrong as hell without being completely rude? Oh, and she mentioned Lupron, and I said no because I don't want to chance all the horrible side effects...she says there are zero side effects except MILD hot flashes at night. I do not believe that!! AND, I asked her why I can't lose a couple of pounds (I don't weigh much, but usually I can control how much I weigh; now my weight just doesn't budge) and if that has anything to do with the fact that I am on 2 birth controls, and she said birth control won't make you gain weight. I have NEVER heard ANY woman say that!!!!! I really think I need to fire this one as my doctor. Oh, and the last thing she says to me? Endo is only around your uterus-no where else. Really? Cuz I have the pictures of my insides to prove that one wrong.
Docs don't know crap about our condition. I think you should (giggles) buy her an endometriosis guide for reference. Good luck in sorting out this mess. I haven't found the perfect doctor yet myself.
I had my first surgery when I was 20 - it was very long and I had endo everywhere... bladder, tubes, uterus, bowel, ovaries... I even had trouble eating - stomach/GI issues from the endo... I got pregnant after the surgery, breastfed a couple of years then had another baby... anyway that first surgery got me to the 10 year mark before the multitude of symptoms came back....
I have the same issues with the bathroom - and they are listed in the medical journals as pretty typical and often used as diagnostic criteria (IBS like symptoms, and irritable bladder as well)... This time I also started getting very nauseous and loosing tonnes of weight over the past couple months- didnt have a whole tonne to loose so after dropping 30 lbs it started getting dangerous - when I had my first sx it was in the states and I had the sx 5 days after the OBGYN suspected endo... This time in Canada (not sure where you are hailing from) it took me a YEAR to even get an OBGYN surgeon to do a consult, then surgery times were booked for 4-6 months. My GP had a hissy fit and by a fluke there was a cancellation so I am getting in for sx in 2 weeks...
I am happy to have one of the best surgeons very experienced in endo - he is following the pain map I have drawn out to take more in depth looks in those area while in sx, (laproscopy), also he reports that endo has been found in women on stomach, lungs and sometimes even in the brain... for anyone who doesnt already know... men even have been found to have endo as well (usually when on an estrogen supp - but they get it and that is the point - it can be anywhere!!! Your dr is nuts!)
Both the last time and this time I went through every conceivable diagnostic test for my GI symptoms, pelvic pain and abdominal pain... all tests came back unremarkable - CT Scans, MRI, Endoscopy, Colonoscopy, a million and one blood tests... which only leaves... endometriosis... I sat with the Surgical OBGYN and in a few minutes he was pretty convinced all my symptoms were from the endo... I seriously hope so because that means it is likely I will experience the same relief from my symptoms after sx.
There is still alot of inaccurate info out there regarding endometriosis, and even dr's are misinformed sometimes - I hope you are able to find a new dr ASAP.
My OBGYN did tell me about a new product, not avail in the USA yet, just Canada and Europe only, it was designed specifically for endometriosis, it is a progesterone pill called "Visanne" made by Bayer. I unfortunately cannot take it (migraines with aura - increased risk for stroke so contraindicated)... The other option he gave as an alternative to Lupron was Merina (the IUD with the progesterone in it - good for up to 5 years) - I opted for the the IUD bc i am definitely not having any more children to stave off the endometriosis.
There are a lot of websites that have reviews about specialists and dr - maybe there are ones for obgyn's in your area and if you are in the States there are many centres that specialize in endometriosis... You are very young and I hope that you find a dr that can actually be helpful.
TouchofGrace-An Endo pain map?!!? God I wish my doctors cared enough to at least ask me what hurts!!! I am in Germany, but I have to see American Army docs...the German surgeon I had was very knowledgable about Endo and he saw me once & scheduled the surgery for the following week!! It seems like Germans take very good care of their patients. In fact, this German surgeon told me I HAD to get my appendix taken out ASAP (meaning 6 months after my lap, the soonest I could get that done) because it is in an 'erect' position and it can very easily burst...he also said I should NOT deploy with the appendix in. Well, long story short, I had to go to the Army doc (since it is cheaper for TriCare) and the Army doc said they will not remove an appendix unless it is bleeding or ruptured. o basically, I have to wait until it is too late!!!! WTF?!?!?! I am REALLY hoping I get the referal to go to that German guy again...he actually got shit done! Oh, & I googled that pill you mentioned-if only it was not a once-a-day thing (I WILL get preggo because I can barely remember to take my pain medication, let alone that!) I will still ask around about it just to check it out. Maybe my German doc can tell me more about it =D Thanks for the advice everyone!!
Also - as an aside I wish my first surgeon mentioned... post op for a couple of months you are extra fertile - despite ANY birthcontrol pill even when taken as prescribed... just a warning to all those out there not intending a pregnancy post sx... be extra vigilant.