Too young for this? Fifteen

[kdanielleeee13]

Hello there all. My name is Kylee, and I am fifteen years old. My story starts around the time of my first period, which takes me back over three and a half years. Seeing as I was twelve years old and new to having a menstrual cycle, my doctors blamed my pain on cramps and being dramatic. I was put on birth control due to the extreme discomfort I was in. It didn't help too much, but I learned to deal with my pain. The next two years went with my normal pain, which was my right side, my lower pelvis, and parts of my back. One night the pain seemed to greatly increase, so my mother took me to the ER. After many countless hours there, I was diagnosed with kidney stones. This was just another thing that doctor's insisted upon blaming my pain on.


In the last couple months my gynecologist and urologist worked together to find a cause for my discomfort. They both speculated that I either had endometriosis or IC due to the type/frequency of my pain. Each of them were leaning more towards endometriosis just because of my age. I was told that having IC at fifteen is not common. On March 3, 2011, I underwent a laparoscopy and a cystoscopy to better see what was going on. My waiting had ended because they had finally figured out that i had IC.


As of now, I am on Elmiron and waiting to see if it works. I only started it two weeks ago, but so far not much change has occured. Hopefully if this doesnt work, we can find something that does.

[needsrelief]

and if the elmiron doesnt work there are other things that may work for you such as atarax,elavil, neurontin, dmso, bladder instillations, bladder distensions, diet, physical therapy ect. most people find the best relief with a multi-modal therapy. for example I take neurontin, atarax and sometimes elavil. I also soon will start my daily bladder insitllations. I have severe IC. this site has alot of info. and the ICA does too.

[ICNDonna]

to the IC Network. I know you'll find a lot of support and information here. One thing I suggest you try is the IC diet. You'll find the link to the latest food list in my signature below. Many ICers find that single step helps more than anything else.

Elmiron can take six months or more before it helps. If you don't feel better soon, I suggest you talk with your doctor about trying some other treatments along with the elmiron.

Sending warm hugs,
Donna

[EmilyAnne]

Hi Kylee,

While I have heard that it's rare to have it that young, I was in exactly the same boat as you 11 years ago. My pain started when I was in 8th grade when I got my period and I went into the ER for appendicitis. They diagnosed me with ovarian cysts and I struggled with mild to moderate pain in my abdomen and pelvic area. I tried the gluten free diet for 3 years in highschool thinking maybe I had celiac disease, but I don't. Then when I started college 5 years ago, my pain started to get more severe and increased over that 5 year span to being incredibly severe so that I had to miss classes and couldn't move much at certain times. I also worked with my gynecologist, actually 3 different ones. And 2 of them thought made it seem like they weren't that concerned (like I was just being dramatic) One of them thought it was just a problem that he could solve by throwing birth control at me (on my 5th different prescription I vowed to never take it again because of the side effects it had on me). Though he also diagnosed me with an imperforate hymen which I did have and he took care of that problem. Finally I found a great doctor who diagnosed me with pelvic floor myalgia which I have, but that didn't take the pain away. Then he said he thought it was endometriosis and he did laparascopy and a cystoscopy with hydrodistension thus diagnosing me with IC.

All that to say, we seem to have really really similar stories and while you are young to have this it definitely happens. It happened to me. It's rare that it will happen in people close to our age, but not impossible. I'm really glad you were able to find it out early! I hope that everything goes well for you with the medication (I'm on elmiron too) and the IC diet and exercise stuff. I saw that there's a group for highschool students who have this, maybe you could look there? And if you ever want to talk feel free to!

[skybluesoul]

Hi Kylee, I'm another one of those unfortunate folks whose IC started early. I have had symptoms since I can remember, so I'm pretty sure I've had IC most of my life. Unlike you though, my parents and I didn't pursue a diagnosis. I guess I wasn't really ready to accept the fact that I had a problem. It wasn't until I developed pelvic floor dysfunction in my 20s that I found out about IC.

Anyway, I just wanted to post and say how brave you are for going through everything. I haven't had a cystoscopy or laparoscopy as of yet. I hope Elmiron will eventually work for you, or that you find something that does.

[mary124]

It may be rare to have it at this age, I don't know. All I do know is that when I was finally dx with IC at 32 (I am 50 now) the doctor who did tell us said that I was too young as all or most of his patients were in their 60's and up. This was in 1992. Now of course I am wondering if at age 19 when I started to have problems that this is what it was. Guess we will never know.
Follow the diet as it helps. There are lots of medications out there to take. I take Elmiron, neurontin (just started that in the last year or so and that has been my lifesaver!) also some pain meds when needed. I also get cysto/hydros about every 6-8 months which helps, just wished that it would last longer but the doctor said that I am lucky that it lasts this long.
You will find a lot of support on this board, I know that I have over the few years that I have been on it, people here understand what we are going thru, as to outside of this group, maybe they pretend to understand.
Keep us posted on things.

Mary