Undiagnosed, lots of pain, and looking for advice

[kalisha]

Hi all! First off, I'm very relieved to have found this forum and to see so many positive and supportive people.

I'm Kallie, a 22 year old female who is struggling with an undiagnosed disorder and looking for advice.

My symptoms:
Over a year of daily intense and crampy abdominal pain (no allergies or changes in diet), two perirectal abscesses (doc is questioning if one became a fistula). The proctologist also saw a lot inflammation and an internal hemorrhoid which he (what I like to call) "zapped". Also mentioned something about a pelvic floor dysfunction (hypertonic muscles?).

I've seen my regular doctor, who seemed reluctant to run "expensive" tests. Just recently saw a proctologist, who seemed to also give me the run around and wanted to wait two months and see me for a follow up.

I managed to convince him to get me a colonoscopy, but that's over 6 weeks away and I'm dealing with all the symptoms and questions until then.

I realize that you aren't doctors, but I'm hoping someone out there has had similar symptoms and I'm wondering how you were diagnose and how long it took? I'm desperate for answers but not getting much interest from the docs.

Thanks in advance guys

 

[Cross-stitch gal]

Hi and welcome to the forum! :welcome:

I'm sorry to hear of the many challenges you've been facing lately. It's frusterating to know that something is wrong, but can't be treated right away.

As I'm sure you've already seen. There are many of us here, along with many different forms of the disease. Diagnosing unfortunately can take anywhere from a matter of months to years. For me, it took me years to be diagnosed. Many times it depends on the doctor, tests ordered and where the disease is.

I encourage you to look around on here. We have an undiagnosed club and female section in our support forum. We also have many great people that gather in our chat room as well. Please let me know if I can answer any questions on here. Take care!

 

[nogutsnoglory]

I'm sorry you are in pain and don't yet know the cause but I'm sure with proper care they will get to the bottom of it. I think a colonoscopy is a great test to see if you may have IBD.

 

[Sarahnarizona]

Hello!
First off let me tell you my diagnosis was super quick. My GI knew exactly what it was by my explanation of my symptoms. A colonoscopy a week later and I was on to my first round of meds. One of the only times in my life I felt “lucky”! There are a lot of people that don’t have a diagnosis. I truly feel for you.
I noticed that you mentioned your regular doctor and a proctologist but not a GI??? A proctologist specializes in Colon, rectum and anus but not the bowels. Having said that I am not sure where in the world you are and the names may be interchangeable where you are???
So what are the tests that your doctor were calling expensive? Again I guess this question would be better answered if I knew where in the world you are. I run laboratory testing for a living and sometimes people are scared away with the word “Expensive”. Hold your ground and tell your Dr. that 70% of health care diagnosis (in the US) are made from laboratory results!!!
Also, something natural that helps with the stomach pain and indigestion (if you have it) is peppermint oil. 0.2mg delivered pill form really works for me. I get mine at my local vitamin shop 
Good luck with your testing.
Sarah

 

[kalisha]

Just realized in my original post I said perirectal abscesses, and they're actually anorectal abscesses!

And Sarah,

I've seen two regular docs (one suspecting a gallbladder flare up and IBS, and the other also suspecting IBS). I went along with their diagnoses until I got the abscess and went to see a proctologist. He looked inside as well and saw all the inflammation - and that's when I started to suspect something more than IBS.

He was hesitant to book me for a colonoscopy because its "expensive". However after dealing with daily stomach pains, I told him that I don't care about the money anymore, and I'm currently waiting to have a consult with a GI doc.

My first doc (who suspected IBS and a flare up of my gallbladder), didnt want to perform an ultrasound or any other tests until my symptoms were more persistent and "bothersome". I can't tell you how many times I've heard the phrase "you're young and healthy, you'll be okay" :ymad:

It's a relief to be able to talk to you all. It's hard to be brushed off when you know something is wrong!

 

[Ihurt]

I am so sorry you are going through this. I feel for you, I really do. I also have been having issues for 2 years now. Have had lots of tests and still am being told IBS, even though my symptoms do not fit IBS. I have other health issues so I know what you mean about feeling like you are being brushed off! I have felt that same way before too with some doctors. Cant tell you how many times I have heard " well you don't look sick, you must be ok"! Yeah, my mom didn't look sick either when she had 4th stage terminal liver cancer! Doctors can be so stupid sometimes it is scary. I hope your upcoming tests can help get you a proper diagnosis and more importantly some help and relief!

Just realized in my original post I said perirectal abscesses, and they're actually anorectal abscesses!

And Sarah,

I've seen two regular docs (one suspecting a gallbladder flare up and IBS, and the other also suspecting IBS). I went along with their diagnoses until I got the abscess and went to see a proctologist. He looked inside as well and saw all the inflammation - and that's when I started to suspect something more than IBS.

He was hesitant to book me for a colonoscopy because its "expensive". However after dealing with daily stomach pains, I told him that I don't care about the money anymore, and I'm currently waiting to have a consult with a GI doc.

My first doc (who suspected IBS and a flare up of my gallbladder), didnt want to perform an ultrasound or any other tests until my symptoms were more persistent and "bothersome". I can't tell you how many times I've heard the phrase "you're young and healthy, you'll be okay" :ymad:

It's a relief to be able to talk to you all. It's hard to be brushed off when you know something is wrong!

 

[Sarahnarizona]

Being brushed off is unacceptable for me. Working in health care has prepared me to deal with situations like this. Education is key. Doctors are not perfect and they are busy. I know for a fact my general practice doctor take at least 20 appointments a day!!

At first I was not sure I liked our Dr. patient relationship but then I started showing up very prepared to talk with him. I kept a running list of question in my purse and make sure to pull it out when I am talking with him. I always ask for a copy of my lab results and ask him directly how he feels my treatment is going. I pin him down in terms a medical jargon. I don't let him ignore any of my symptoms but I also keep it simple for him. If I am suffering from several different problems I tend to make several appointments or ask for a longer appointment time if I know I have complicated issues to discuss. And last but not least I ask for a copy of my chart for that day. I have even offered to pick it up when ready or provide a postage paid envelope.

I try and manage my care so my several doctors don't have to rely on there offices to talk to each other. I have found that showing concern for my health has proved to my doctor that I truly care about my health care decisions.

Do you still have your gallbladder? Have you changed your diet at all? I had my gallbladder removed when I was diagnosed with IBS 7 years ago. Although those symptoms were very mild compared to my Crohn's flair it was super uncomfortable. I had problems with oily stools for several months after having it removed.

Sarah

 

[dannysmom]

Hi and welcome. I am glad you are finally getting a colonoscopy. Is your pain always in the same place? I really hope you get answers and effective treatment. My son is still undiagnosed, but he was given a colonoscopy within a few months of symptom onset.