I Am Going To ******* Scream! --Vent

[looking4help]

Ok, after waiting for a week for the OB nurse to call me I found out this morning that my pap was normal (surprising since I usually have abnormal cells hmmm??) and my vaginal ultrasound was normal. (LONG LOUD SCREAM inserted here!)

However she strongly wants to do a laproscopy.

I mean I don't want something to be wrong but on the other hand this is 3 years of pain! I am sooo sick of this merry go round of drs! WTH!!!

• 
  
  
• I have been to general dr so many times I can't count (after firing 3 in the past)
  
• I have been to an ENT 3 times now.
  
• I have had a colonoscopy showed internal hemorrhoids and diverticulus. (Oh that explains the black tar poop (WHATTTT!!) but no answer for the horrible amounts of mucus)
  
• I have had endoscopy showed ucler activity and well not really positive for celiac but you do have abnormal cells. (Well, I have been gluten free for a week at this point would that effect the test??? She said nooo but ummm well, ummm let me go ask the dr. This was a PA not even the actual GI! PA came back and said here is a surgeon's number. Call him. I was like WTF??? No more answers for me after she said that. I left and promptly fired them.)
  
• Hired new GI and he sent me to OB to check for endometriosis. Said to continue gluten free diet because if it helps then keep it up. (Although he did look at me a little disbelieving.) I have not returned to him yet because I had to go to OB and get this done.
  
• Went to OB and so forth. (already wrote the results of this above)
  

I feel like I am going CRAZY! I am trying so hard to be positive but geeezz! I don't know what to do at this point! The merry go round is awful! I feel like a huge pin cushion and a science experiment!

I have been gluten free since April '10 and many things have disappeared but the pain remains.

I am so sorry to vent so much. I truly try to keep positive but I don't want to dump these feelings on my poor family again. They try so hard to be supportive but they don't get it.

Thanks for reading.

[sandsurfgirl]

I wish I had an answer for you. HUGS I went through this same thing for years to get diagnosed with celiac so I know how frustrating it is to get all these tests done and not get answers. I was sick off and on my whole life and never knew why. When I got the celiac diagnosis I was overjoyed!

Hang in there and keep looking.

[kayo]

<<Hugs>> I can totally understand your frustration.

My understanding is that diverticulitis is very painful. As are ulcers. Did they talk about treatment options? Diet? I would think the culprit is that right there. Why did they move on from that to OB? Seems odd that they dismissed both of those when the tests came back positive.

[tmbarke]

I can sympathize with your frustrations - I have gone thru pain like that most of my life. Even intimate encounters were painful!

No doctor could find anything but a miniscule cyst.......hardly could cause that.....ultrasound showed that.

FINALLY.......I got a doctor that scheduled a laproscopy and guess what he found.

Adhesions.

I had an infection or two as a younger woman and one was really bad.....washed away the good bacteria too much.

The scar tissue grew everything together (hence the pain) and during the laprocopy - the doctor cut it away and told me that later on in life, I'd have to do it again.

He said that my intestines were adhered to and not free to move causing the painful BM's - and since the other stuff was adhered too.....painful intercourse.

I highly recommend the laproscopy and stay hopeful...........it's the ONLY thing that found and fixed the problem

Stay positive and my heart goes out to you!

Hugs!

Tena

[ftmomma]

I'm new here and was just diagnosed this week with Celiac. It's been 10 full months of painful symptoms. 2 visits to the ER in the middle of the night because I thought something inside me was rupturing...and 1 time I was passing out and had a temporary parylisis in my hands and feet. The paraylis went away but the peripheral neuropathy still remains 5 weeks out.

I really thought it was an OBGYN issue for a while as well. The abdominal pain was so intense and seemed to be much worse right about the time of my ovulation. I've kept a calendar of symptoms since Sept--trying to make find some connections. (wasnt' ever keeping track of food though!) and now I think I probably tended to eat more "junk" or processed foods/carbs when I was mid cycle...hence resulting in even more GI symptoms and pain.

At OBGYN I had internal/external ultrasounds, paps, exams, etc, etc. - All Normal!

At Primary Care Dr I was tested for everything from RA, to Lyme disease, to throid issues- All Normal!

CT Scan (had an allergic reaction to the contrast dye) - results: Normal!

My family would all be so happy to hear I had another "normal" result....but everytime, like you I wanted to SCREAM! Soooo frustrating. I sure has hell don't feel "normal" I kept saying. I was starting to think this daily pain and GI issues might be a new "normal" for me. I would think to myslef "I'll just keep losing weight and one of these days when I'm too weak/sick to get out of bed, someone will sheip me off to a hospital some where and hopefully think outside the freaking box and figure it out".

I'm grateful I ended up with a good GI dr. My initial antibody results for celiac were....you guessed it- "normal". But based on all my symptoms he wanted to investiage further and do an endoscopy and genetic testing.

They were the two things that (finally) came back - NOT normal!!

Hang in there....be your advocate. Don't take "we don't know" for an answer. You know your body! Good luck!

[ravenwoodglass]

Do let them do the laproscopy. You may very well have adhesions and as another poster wrote the doctor can free things up while they are in there. I got a great deal of relief from having the adhesions freed. As said the can grow back and they have in me but it took well over 10 years to do so. I am now leaving mine alone since although I can feel where the bowel is being pulled out of place they aren't painful.

As to the diverticulosis, those pockets may resolve after you have been on the diet for a while. I had them extensively before diagnosis, they usually are found on the left descending colon but mine where throughout the whole large intestine. A routine colonscopy after being gluten free for a few years revealed almost all were gone. If you had diverticulitis, an inflammation of the diverticuli you would be very, very sick with a high fever and many other symptoms. They would have know that during the scope and you would have been immediately hospitalized. some doctors used to advise people to avoid seeds and nuts with diverticulosis but that is no longer thought to be needed.

I hope the laproscopy helps the discomfort for you.

As to the mucus that can be found when we have an intolerance or an allergy to a food it can also be part of the internal hemmoroid issue. Mucous forms as a protective barrier. Hopeful that will resolve for you soon but do follow up with the doctor if it doesn't.

[vbecton]

Sorry about your frustrations! I know we are going through some of the same things. Getting a diagnosis shouldn't be this difficult. AT ALL! We know our bodies and it's like we are constantly being shrugged off, told we are fine, told it isn't that bad, or it will get better over time. I'd like to meet the doctor that just says, "I don't know what the "F" you have, but I'm willing to help you find out." It's a team effort, patient + doctor!

The last doctor who told me I would get better on a whole grain diet, I kindly invited him to spend the night with me and to read me stories as a expelled my guts in the toilet. I'm sure that was harsh, but HELLO!

I hope you get some relief soon. VERY SOON!

[GlutenFreeManna]

Everyone else already gave you great advice so I'll just say I can understand the frustration. I had so many tests, I too felt like I had donated my body to science or something. I used to pray they would find something, anything. It's the worst thing in the world to not know what's wrong, but you are not crazy. You have pain for a reason. Hang in there.

[looking4help]

Thank you everyone for the responses. I got so frustrated earlier after posting I felt myself hitting the depression mode and knew I wanted to eat so I promptly drove to my fav gluten free bakery and had lunch. I didn't want to give up and eat poison! Not that much gluten is left in my house at this point.

I feel a little better after a large piece of gluten free chocolate pecan pie. OHHH I love my peeps there! They know how to help a girl out!

Anyways... I have already been hospitalized for diverticulitis through an ER visit in Nov 08. I didn't have a clue what was wrong but all I knew was I was gripped by horrible pain and I fell to my knees.

So, yes I know that pain and have had it flair up one more time and immediately got my dose of antibiotics and went on my soft diet.

The gluten free diet has helped many things and I can tell the difference but it's still not quite right.

Thank you for the encouragement to move forward with the laproscopy. I will move forward with that because I want to at the very minimum check it off my list and say it's been done Mr. GI dr.

UGHH!! Anyways, I am going to enjoy a nice relaxing afternoon here as it's quite rainy and cool.

Again thank you ALL!! I really am glad to have this place to lean on!

Everyone else already gave you great advice so I'll just say I can understand the frustration. I had so many tests, I too felt like I had donated my body to science or something. I used to pray they would find something, anything. It's the worst thing in the world to not know what's wrong, but you are not crazy. You have pain for a reason. Hang in there.