Having upper abdominal pain. Dr suspects Endometriosis

[MC0915]

Hi, For about 10 + years I have been having a wide range of symptoms. I was told by many doctors and specialists that I have IBS/Interstitial Cystitis/Chronic Gastritis and more. I have always had bad periods since I can remember. I am now 41 and it is at it's all time worst. For the past 6 years I have been in the emergency room about 2-3 times per year. It starts with severe abdominal pain above my belly button. Pain is a stabbing pain and it comes and goes every few minutes. The pain gets so severe that I end up in the emergency room every time. I also have severe nausea and vomiting. This usually lasts anywhere from 24 to 48 hours. I recover and then it just happens again. I have seen a gastro doctor who performed tests including an endoscopy but results were all normal. I have had MRI, Ultrasound...you name it. Shows nothing wrong with my digestive system. I do notice this happens either when my period is due, during or after. I recently saw my obgyn who seems to think I may have endometriosis. He has scheduled me for laparoscopy for tomorrow to confirm his diagnosis. I also have to mention that my periods are extremely irregular. Sometimes I have it every other week. Then I won't get it for a month. It's pretty much all over the place. During my period I suffer from nausea, diarrhea, large blood clotting, fatigue..in general I just feel terrible and usually unable to leave the couch. I am just looking for some answers since not one doctor can give me a definite answer. This has caused a major strain in my life. I had to quit my job and my relationships are suffering as well. I just want an answer and to get better.  

[specialmom]

Hi,  it's hard to say as even your doctors are struggling to tell you what is going on.  This may be why you've had no answers.  I would like to give you one but am just not sure.  Sounds quite debilitating especially since you can't even work with it.  we all need income so that is definitely a problem but more so that you probably would like your life back and to not have it ruled by these symptoms.  Things that come to mind for me are to ask if you've had a C125 test.  This is a blood test and a marker for things like ovarian cancer.  I sincerely doubt you have this but it is worth ruling out.  Symptoms are such that it is often overlooked as something else until it is advanced.  I always encourage women when they are having things such as you describe to ask about this.  It's a seeding cancer so tumors are not noticeable often.  They can be tiny within the ovaries, omentum, and other areas surrounding the ovaries (doesn't follow strictly what you would think).  So, rule that out.  And since they are mentioning endometriosis, this is a viable conclusion for why you have your symptoms and a full diagnosis along with treatment would seem reasonable.  are you doubting endo?  Treatment includes medications such as hormonal medications, along with other medications specific to this disorder.  One actually inhibits growth.  So, there are medicinal treatments.  There is also surgery such as ablation or even a hysterectomy.  While at 41, that's not great----  at all, it's better than not being able to work or be happy in your relationship or life due to endo.  So, I would begin focusing on this and taking steps to make a treatment plan.  Here's an article that may help http://www.medhelp.org/womens-health/articles/4-Telltale-Signs-of-Endometriosis/150

or try this:  http://www.mayoclinic.org/diseases-conditions/endometriosis/diagnosis-treatment/treatment/txc-20236449

let me know what you think or how this progresses.  We also have an endometriosis forum here that you can find under communities above.  (I like to look at the alphabetical list, hit on E and you'll find it).  good luck

[MC0915]

Thank You for your response. I appreciate you taking the time. I had my laparosocpy just 4 days ago which confirmed my Dr diagnosis ofor endo. He removed quite a few adhesions on my uterus. He also performed a biopsy to rule out any types of cancer. I see him for a follow up in 3 days to discuss what the next step will be. I know thatendo eventually will grow back so I'm not sure what will happen. I've tried medications such as hormones to control symptoms but they made me violently ill so that's not an option for me at this point. I guess I'll have to wait and see. This is new to me. I've had symptoms for over 10 years with no diagnosis until now. It's a terrible disease. Thanks again and I'm open to any advice

[specialmom]

Ugh, sorry.  Please DO check out the endometriosis forum.  http://www.medhelp.org/forums/Endometriosis/show/218  And the link I sent you from the Mayo Clinic had all the different treatment methods.  Hormonal therapy is just one of several options!  There is one that is not hormonal that keeps it from growing back.  And DO ask about the CA125 test which is not a biopsy but a blood test---  it's a marker test.  But that is just to rule that out.  As it sounds like endo is the situation here.  Stay in touch!  This sounds like it has been a difficult journey but hopefully you will get support and ideas here.  Check out the endo forum and I might look at it myself to better understand.  good luck

[MC0915]

Thank You! I will check out the endo forum to better educate myself and I will ask my doctor about the CA125 test. I see him on Monday for a follow up. As far as I know, he did not do this test. And you are right. It's always better to rule it out anything serious. I will also ask him about non hormonal treatment options. I don't know much about endo but I do know it is a terrible thing to live with! Thank You again and I will keep you posted :)

[MC0915]

Not one response on here. Wow