Omg...i Might Be On To Something

[jerseyangel]

Wow Rachel--what to make of this? On the one hand, I think that from now on, they will be looking for something--not passing this off as stress or IBS or some such nonsense. This could actually be the start of something that will lead to real answers. One note that crossed my mind as I was reading--during my ultrasound, she could not find one of my ovarys either. When I expressed concern, she said it was probably hidden behind my large intestine.(!) Maybe a Celiac trait? I don't know. I feel bad that you were upset I'm not much help here Get some rest tonight and try (I know it's hard) not to think about it so much. I think it's all going to work out fine--maybe she's really on to something (fingers crossed). Why do these things always have to be so *hard*

[AndreaB]

Patti.......

I found it!!!!

Fear of Words Logophobia or verbophobia

I also learned I had 2 other phobias

Fear of tornadoes or hurricanes lilapsophobia

Fear of Medicine, taking; or drugs Pharmacophobia

In the process of learning phobias you're learning some really big words!

[jerseyangel]

Patti.......

I found it!!!!

Fear of Words Logophobia or verbophobia

I also learned I had 2 other phobias

Fear of tornadoes or hurricanes lilapsophobia

Fear of Medicine, taking; or drugs Pharmacophobia

Cool Celia! I did google earlier, and came up with nothing that fit. So we're a couple of Logophobics You're not gonna believe this, but I also have a fear of taking medicines--but just the first time. I'm petrified that I'll have an allergic reaction and die--seriously, I will only take a new med if my husband is home with me in case something happens. Spooky again

[Matilda]

I think it was only yesterday I was about to post and say congratulations on getting to 1500 posts in this thread, but I got distracted. Today I looked and it's 1755. What a gabathon! Maybe I only have to wait till tomorrow to say congratulations on 2000!

[VydorScope]

Very heartwarming My daughter is considering adoption!

Kristi and I are rearching agencies..... think we are going with Bethany.

[AndreaB]

As an adoptee (and also, many of my friends have adopted), I beg to differ. It IS the same as having your own child. It's just a very different (though still painful) kind of labor!

I just meant as far as not going through the pregnancy itself. Sorry.

[jerseyangel]

OMG ME TOO.......the same way..... okay are you my twin??

One of these days, we're gonna have to seriously compare notes--I love it that I'm not the only one with this stuff

[AndreaB]

I think it was only yesterday I was about to post and say congratulations on getting to 1500 posts in this thread, but I got distracted. Today I looked and it's 1755. What a gabathon! Maybe I only have to wait till tomorrow to say congratulations on 2000!

What can we say. Come join us more often. I'm sure we'll hit 2000 soon, oh well the weekends coming though. I'll guess Monday unless people are super chatty tomorrow. It seems like Tues-Thur is the busiest time on this forum.

[rinne]

Step away for the day and 10 pages to read, I'm impressed.

Rachel, I'm sorry the doctor's visit didn't bring you answers but at least you now know that you are an "interesting case" and she believes you. I think you have a lot of courage, I think everyone here has, in facing illness and dealing with it straightforwardly. No thinking that the Doctors have all the answers and will fix us, instead understanding that in their arrogance they too often ignore the relationship between our diet and our health.

I feel like such an idiot, I've been reading about your cysts but until I made the post about the fibroid tumors, two different kinds of fibroid, one in my hand, the other a breast, and I don't know what kind is in my kidney or if it is a stone I had never even considered that I might also have cysts in my uterus. I don't know if I made that really clear in my question, what I'm wondering is how many with uterine cysts as well as other fibroid tumors.

Rinne - re the cyst/fibroids...I had tons of fibroids that seemed to appear all at once about 5 years ago...at that time I was drinking a lot of soy milk, plus am sure I had lots more hidden soy in my diet.

Did they go away, any details are appreciated but I don't want to be intrusive?

I'm thinking that the olive oil I was using could have had soy oil in it, that is really the only source I can think of in my diet for quite a while now.

I don't know whether to be sorry I missed the part about drinking adventures. I might have revealed that for a brief time I made an effort to be an alcoholic, I wore black all the time and when asked WHY? I would reply that I was in mourning for a life that was already dead. I loved Leonard Cohen's dark sense of humor for anyone who has heard of the Canadian Minstrel. See, it is a good thing I missed that part cause now I'm starting to remember......

[AndreaB]

I wouldn't mind adoption....it's just sooooo expensive.

Of course my mom thinks I already have too many kids.

Hubby and I have 3 and he has 5 from a previous marriage.

My mother really thinks he has too many.

Rinne,

That olive oil thing really riles me as well. We are soy intolerant and I know I'm also allergic. No one else in the family has had allergy tests done.

[jerseyangel]

Rinne--I just remembered you asked about this last night--sorry! A fibroid is a benign tumor that grows in the uterus, or in the lining, or outside. Estrogen is what feeds them and causes them to grow. They can cause pain--it depends on the location and also the size. They are common in women--especially during the ages of 35-50. They are different than a cyst.

[penguin]

I would love to adopt, but I could never give up a child for adoption because I would be afraid of the home they were going to. My dad and his brother (twins) were adopted into a very wealthy, but crappy home. They were both into drugs and alcohol and both died of complications of both within 8 months of eachother. I need to contact their birth parents, but I don't want to have that conversation:

"Um, hi. Remember the twins you gave up in college? Well, yeah, they're both dead from substance abuse, and I never knew either of them. By the way, do you have any autoimmune diseases in your family?"

Good for those who have adopted, though!

Sorry corn intolerant folks, but I just made some yummy caramel corn. I don't think I let the caramel boil long enough, but it's stil yummy yummy!

And I took some benadryl for the hives again So I'm on my way to bed. G'night!

[Rachel--24]

Rinne, I have a fibroid too. Today when the doc was doing her exam and I had pain which she said was where my uterus is....she said the pain I get is probably from the fibroid. But that was before she did the ultrasound and saw my intestines doing some kind of dance...maybe now she thinks different.

Someone mentioned that my intestines could be pressing on my organs including the ovaries (I cant remember who cuz its already too many pages back) but this is what I think too. I think cuz I'm all bloated and obviously having some intestinal distress that its just pressing on my ovaries and causing a pinching type pain.

[Rachel--24]

Susan, I did have a colonoscopy recently but it was incomplete cuz the GI was unable to get the scope around a sharp turn so it was only half done. At the time he didnt recommend doing the procedure again because he thought everything looked good and he said he doubted if he would have seen anything wrong even he could get a complete view. Maybe now they will want to try again.

I'm sooo tired guys...I'm off to get my massage and then hit the sack.

Good night all.

Thanks for all your support!!

[Fiddle-Faddle]

Hi, RAchel, sorry I missed your post about your doctor visit til now (serves me right for skimming!). The only thing that occurs to me right off the bat is that your OBGYN is saying it's a gastro issue--but if she couldn't see your ovaries, she really can't rule them out, can she? I mean, what if she's missing something significant because she's distracted by your dancing bowels? (See, we just can't take you anywhere! )

[AndreaB]

We just got through day 1 of rice free for my daughter. She's been having tummy problems lately. She did better today so we'll see how the rest of the week plays out.

[Rachel--24]

Oh, and if she's not with the same group as Dr. R, make sure she sends you a written report, that way you can have a copy of it to show him and anyone else you might get referred to.

Donna,

I meant to answer this earlier....The obgyn was at Camino Medical so yeah....the same place as Dr. R. I'm sure she could have seen the info. from the colonoscopy but probably hadnt been looking for GI stuff prior to my appt. I want her to write up what she saw today so when I see Dr. R again....he knows something is wrong. Last time I saw him he said that my digestion was very slow...what does that mean exactly? Could slow digestion be the cause of what was seen on the ultrasound today? I think its obviously more than just slow digestion but I just dont know what the heck is going on in there.

[Green12]

So sorry Rachel your appt didn't go as expected. I know you were really hoping to get some answers, and now you are left with only more questions. When we first started talking about all this, the pain with your ovaries, I had researched some for you and I did find correlation between pain in that region having to do with the intestines. Down there everything is so close together it is common to confuse the two. Put that together with all of the crazy/abnormal stools you have been having over the last month or more, and maybe it all adds up. If your intestinal tissues are agitated and inflamed, I can see how they would be putting pressure on your ovaries, uterus, etc. I have to wonder if when the doc said they were all over the place, she meant they were spasming, or something (the tissue and the muscles)???? I would have to do more research. But I am hopeful that now that they (docs) are aware there is something going on, as I think Celia said, this is the first step to finding a solution. I know this has to be scary, you are definitely in my thoughts. Hang in there!

Donna, how is your ampeller vulla (sp?) today?? (I would have to scroll back like 10 pages to find the correct spelling of the body part, but you know what I am talking about, right?!?!) I actually took a lot of anatomy and physiology courses for my major and I don't ever remember this term being mentioned.

Oh, and welcome all the new peeps!

Chelse, that caramel corn sounds really good! I have a weakness for caramel.

I always show up too late, and miss the action! Good night everybody!

[DingoGirl]

I don't know whether to be sorry I missed the part about drinking adventures. I might have revealed that for a brief time I made an effort to be an alcoholic, I wore black all the time and when asked WHY? I would reply that I was in mourning for a life that was already dead. I loved Leonard Cohen's dark sense of humor for anyone who has heard of the Canadian Minstrel. See, it is a good thing I missed that part cause now I'm starting to remember......

Oh no, you're not getting off that easy - - DO share!!

[Guest Robbin]

Hi everyone. Rachel, I agree with Fiddle Faddle-she may be missing something else there. I have had many ultrasounds on ovaries (and pre-hysterectomy, on the uterus) and the techs had me turn every which way to get a good view. It just sounds like an incomplete exam to me. How can she rule out the ovaries if she never saw them?

Vincent, I am so glad to hear that you don't have these problems with YOUR ovaries!! lol.

Chelsea, I can relate to what you are saying somewhat with the problem finding answers to family history-I was adopted by my stepfather and I really don't want to have any contact with the loser who represents my "paternal side". It gets further complicated and emotional when you have children, so I recommend if possible, to get some kind of answers before you have children so you will have a clearer picture of medical histories. It might help in the future. I am sure it would probably have been beneficial to me to have a complete history. Maybe even another person related to the "birth parents" would be a possibility-less of an emotional upheaval and still able to get some answers. On the other side of the issue, I have a close friend who had to give up a baby for adoption at a young age and she only wished to find a good home for her child with two parents who would be able to provide a good life for her. Her daughter is 21 and she is tentatively thinking perhaps meeting with her. I can only hope her daughter's story is a happy one, as it would devastate my friend if she learned of abuse or neglect. She has suffered alot of heartache for all these years, but really didn't have many options short of abortion and that wasn't something she could do.

[rinne]

Last time I saw him he said that my digestion was very slow...what does that mean exactly? Could slow digestion be the cause of what was seen on the ultrasound today? I think its obviously more than just slow digestion but I just dont know what the heck is going on in there.

Rachel, my acupuncterist says that my digestion is very weak which I wonder if what your doctor means by slow. I've been thinking of it like if your digestion is working 100% then your food will be digested 100% but if it is only at 50% then only...you get where I am going with this. Isn't this malabsorption? It is one of my problems and I am wondering how long after going gluten free does it take before the malabsorption ends?

[DingoGirl]

I would love to adopt, but I could never give up a child for adoption because I would be afraid of the home they were going to. My dad and his brother (twins) were adopted into a very wealthy, but crappy home. They were both into drugs and alcohol and both died of complications of both within 8 months of eachother. I need to contact their birth parents, but I don't want to have that conversation:

Chelsea that is terrible! Ancient news, I'm sure, but sad. So sorry.

[rinne]

Oh no, you're not getting off that easy - - DO share!!

Tee Hee, well maybe if wine comes out again.

[christine 25]

Rachel, did you eat the edward and sons crackers to try and aggrivate the problem the night before the ultrasound? becuase you said those were giving you reactions at one point.

If the doctor seirously said, " your bowels are all over the place" and looked perplexed and had no suggestions other than to send you away, I wouldnt go see her or him again.

That just sounds like an unprofessional comment to me. What does that mean anyway? she doesnt have the foggiest idea why she cant see your ovary clearly on the ultrasound.

There is a reason for all your symptoms and no one is genious enough to figure it out yet, doctors, secialists have no clue, and neither have you or I or any of us, so dont feel bad, I have the same symptoms as you, with the jaw face swelling etc. not even you or me have figured it out and were obsessed. we are trying to. Speaking for myself,,,all the dietary changes, stress, neck massages, avoiding sulfites, aurixgo, msg, corn, etc. bull-s lines about yoga etc. and were doing it all, but no matter how perfect my diet is there is still something systemicly wrong withing my body and the way it processes things.

For me I think there is somthing systemicly wrong with my endocrine system, metabolic system, maybe enzymatically. Who knows, but all started after a lot of heavy metal exposure in my case, followed by thyroid meds, chronic head pain and swelling ever since.

why....who cares, how to fix it is what I want to know, are there some magic enzymes i should take, or drugs, am i just screwed, or will it go away on its own?

I am thinking enzymes tho, that I lack certain enzymes to break down the protiens or glycosaminoglycans, in the the food, and mucus that get produced in my body and they are collecting in my joints and skin, eyes, and mostly bones and that is why I have a lot of bone pain.

I think that the digestive system has been your main focus, but what if that is not the real source of the problem? For me its the proteins in gluten not the gluten itself, its all proteins, corn and espically dairy. I dont have cleiac disease, so why waste time with those doctors.

Have you been talking to the natual doctor yet? I know he is obsessed with the leaky gut syndrome.

As for me I have been doing better, I stll have pain. I stared my peroid the other day with a lot of cramps and pain, had to take some adivil it helped. I had a porceline crown and two resin composite fillings done today, and im not poisoned by them I dont think,,,lol at least not yet.

I dropped 1,360 cash on the teeth today, and thats a lot for me I dont have any family here to help me pay for it, im on my own. I dont expect it to help with my issues, and you know honestly I dont excpect being on any real diet, SCD, msg free corn free etc to really help either, and no matter how much auxigro I avoid it doesnt matter, cause somthing is internally wrong with my metabolic system, and thats what I am trying to figure out, if it is even at all possible. sorry if that sounds stark.

I go out with my friends, and I have a social life, I work everyday and I work through the pain, I dont call off sick for work and I live my life, and I wont stay at home all reculsive alone, because that is how I get depressed, you know?

Rachel---- do you ever get blurry vision or corneal clouding? You said you get mucus in your eyes?

Have you been checked for MPS? or lysosomal storage disease yet?

that might be somthing to look into.

I am going to look into it myself, I dont give a F, if it sounds far fetched, but like Ive been saying fromt he beginning, its somehing to do with the saccrides being uncutup and undigested and collecting in the tissues in my skin, bones, eyes.

A major symptom is sticky eyes, and blurry vision. with I recently experienced.

I guess im pretty much on my own here cause the focus is mainly on the gut and gluten.

but avoiding all the foods in the world hasent helped, so im going to try somthing else.

Good luck.

C

[evie]

, and you know honestly I dont excpect being on any real diet, SCD, msg free corn free etc to really help either, and no matter how much auxigro I avoid it doesnt matter, cause somthing is internally wrong with my metabolic system, and thats what I am trying to figure out, if it is even at all possible. sorry if that sounds stark.

I go out with my friends, and I have a social life, I work everyday and I work through the pain, I dont call off sick for work and I live my life, and I wont stay at home all reculsive alone, because that is how I get depressed, you know?

Rachel---- do you ever get blurry vision or corneal clouding? You said you get mucus in your eyes?

Have you been checked for MPS? or lysosomal storage disease yet?

that might be somthing to look into.

I am going to look into it myself, I dont give a F, if it sounds far fetched, but like Ive been saying fromt he beginning, its somehing to do with the saccrides being uncutup and undigested and collecting in the tissues in my skin, bones, eyes.

A major symptom is sticky eyes, and blurry vision. with I recently experienced.

I guess im pretty much on my own here cause the focus is mainly on the gut and gluten.

but avoiding all the foods in the world hasent helped, so im going to try somthing else.

Good luck.

C