Mystery Abdominal Disease is still a mystery...

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Permalink Reply by Stephanie on June 25, 2008 at 6:34pm

So my mom just got home and we're going to figure something out...I might try and get my dad to come home and go to the hospital with me so my mom can still go camping. (I don't want her to miss out on fun with her family.) But it looks like I'll be seeking some sort of treatment today...Please pray for me/send some good vibes!

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Permalink Reply by Christine on June 25, 2008 at 3:52pm

This sounds all too familiar.. I am in a pretty good amount of pain myself right now from what I am assuming are my ovarian cysts flaring up.. however, I have also had endometriosis and IBS, so who knows.. my OB has been trying to regulate my cycle with birth control pills for the past 6 months, and the last two cycles- no period. I THINK I had some spotting about a month & a half ago, but I am due to start a new pack on Friday and nothing- except pain!! I called today and they said they could see me July 16th. I said "Umm.. that makes NO sense-- I am having pain NOW, and I am supposed to start my next pack of pills in two days.." Hello!! So I have an appt tomorrow. Sometimes you just have to be pushy!

As for the upper endo, just make sure they give you propofol- it's white & burns like a bitch when it goes in, but it is the BEST for quick procedures and sedation, and you won't remember a thing. I would never use anything else & I am VERY proactive about this as I get really belligerent under anesthesia and have gotten hurt a couple of times doing things I have no memory of...

To me, the type of pain you are having is probably the most telling-- if it hurts when you poop, when you sit down (like someone is stabbing you in the hoo-ha) or when you have sex, that is what endometriosis feels like. A cyst feels like fullness in your low abdomen and pain that is pretty specific to where your ovaries are on one side or the other.. also worse when you sit down (especially if you plop right down- ouch!) but more in the front than inside.

Also.. I had a duodenal ulcer that didn't show up on my endo but only on a capsule endoscopy-- that's another thought if you don't get any answers. I am supposed to be seeing a GI specialist next month as I get severe pain attacks that feel exactly like gallbladder pain, except I don't have a gallbladder! Sometimes they come for no reason at all, and they are also brought on by Vicodin, of all bizarre things. It's maddening not to know, isn't it? I am nauseated a lot too- thank goodness for good insurance because I'm allergic to compazine so I have a healthy supply of zofran...

Good luck to you, I hope you find out soon what's up. You've gotten some great advice here & I agree wholeheartedly. You are too young to not figure this out now.

xoxo
Christine

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Permalink Reply by Colleen on June 25, 2008 at 4:46pm

I also found that with the ovarain cysts I had lower back pain. With the endo I had a lot of pain when I was ovulating...and severe periods. (Thank God...that's all over with!!)

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Permalink Reply by Whole_Body_Healer on June 25, 2008 at 6:04pm

Yes, cranky wheel gets the oil...i.e. pain is acted upon by practitioners relative to symptoms...sometimes when this is clearly communicated, this helps accelerate appointments or treatment at the ER. and the cranky wheel thing goes internally too....pain is something to pay attention to, and listening to one's own voice, one's own experience & pushing for appropriate treatment.

I spent almost 2 years trying to get diagnosed for my ovarian cancer. Some of the symptoms were similar to what is being discussed here. I'm NOT saying you might have OC, just that the symptoms associated in the gynecological realm can be loud, but somewhat vague relative to many practitioner's current understanding of what this stuff means is going on....so it is even MORE imperative to push for appropriate & expediant treatment & if you're not getting anywhere with a particular practitioner, move on to the next til you get the right fit/things start getting resolved.
Michalene

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Permalink Reply by Christine on June 25, 2008 at 6:47pm

Are you calling me cranky?? ;-) Just kidding. What were your symptoms when you had ovarian cancer, if you don't mind me asking? And how were you finally diagnosed?

It makes me really mad when practitioners ignore symptoms-- I have taken care of several young people who were misdiagnosed for this very reason.. the "it couldn't be cancer, you're too young" mentality-- then by the time it was, it was too late. That's why I believe in being really proactive when it comes to your health. Not only that, but things that are just plain MISSED-- medical mistakes.. I could go on and on. One of the things I was just saying was about the misdiagnoses I saw when I was working at my old job-- all because of the pathology labs that specimens were sent to. Who would think to ask for a second opinion on pathology?? And yet sometimes that's just what you have to do. Ugh, it's a nightmare.. sorry to digress!

Christine

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Permalink Reply by Whole_Body_Healer on June 25, 2008 at 10:13pm

Hey Christine....I'm more saying that VOICING our needs & listening to what's going on inside & effectively pushing for the attention is really important & you mentioned that too.

Relative to my symptoms, at 1st I had subtle pain in my ovary area upon examination. This progressively increased to feeling it generally & then ultimately feeling a lump. The big thing was symptoms that appeared to be "digestive"...bloating, changes in bowel movements, longer periods of constipation. Towards my diagnosis I had excrutiating bowel difficulties off & on...perhaps due to changes in volume, but this was because one of the tumors had started impacting my colon. Also, I was suffering from more & more pervasive fatigue, one day unable to stand from exhaustion. Also lower back pain.

Part of my challenges were due to incompetance & part to not having insurance & finances.

For instance, at one place I was told I couldn't even see a real doctor for 6weeks & not until I came in with a daily log of my food intake. I pushed back & got seen sooner, although it still wasn't right away. I asked for a CA-125 test & they told me that I could not get that there. When I actually saw the doctor, he dismissed everything as IBS & didn't even examine me! I finally went to my parent's doctor & he suspected something serious right away. Then an ultra-sound revealed the likeliness of cancer & my CA-125 was very elevated.

I totally agree with you about the importance of being proactive....even if people have a problem with that, think you're pushy or worse! It's your body & due to a multitude of factors YOU must be your own advocate. Many practitioners have a million stressors & factors which make it challenging for them to do the right thing sometimes...like starting with that fact that they might see you for 5-15 minutes! The whole system needs to be revamped in various ways, but to start with one needs to PUSH & work the system to support YOU to get what you need. This becomes EVEN more important once you become diagnosed with something like cancer.

I wish we were taught growing up HOW to listen to our bodies & decipher what kind of things are being communicated & which are important to act on & follow-up on. Add to that a medical/insurance system in great need of transformation, and there is far too much in-action, slow action, or dismissing of symptoms that can often end up evolving to far more serious conditions, than would have been if the initial symptoms had been heeded, acted upon & responded to. In my case, it was the latter that contributed to my current situation.

I just hope that now, my voice is becoming more effective in general.
Michalene

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Permalink Reply by girlandcoconut (formerly known as lolabloom!) on June 25, 2008 at 10:39pm

Hi Steph,

Chiming in here too. I'm a fellow Seattle-area-ite as well ;)

So, I went through something very, very similar at the same age. I have to say that I'm happy that you found this place and all of us persistent (comes from love) folks ;) I didn't have that and tried to figure it out on my own and got so frustrated by all the tests, poking and prodding and "i don't knows".

I'm glad you aren't waiting to get things checked out and finding someone to see down there now. Keep us posted! Sending you "calm down please tummy area" vibes. Hugs

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Permalink Reply by Stephanie on June 25, 2008 at 10:46pm

Thanks so much!

So I went to the ER here (not a very large, nor good one), and they did a urine test to see if I had a UTI. (Why...?) Came back negative (shocking). They sent me home with a prescription for Vicodin. So, I'm just lovin' up on that until I get back to SeaTown and see some legit doctors...I guess I'll start with the GI, since I can't get in with the gyno until August 5th. (I'll be calling weekly to check for cancellations that I can snag.)

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