Just been diagnosed

[nolulu]

I have endometriosis and have been dealing with it for the last six years. Lately I haven't been feeling like myself but I attributed it to the endometriosis. Well it turns out that my gallbladder had to come out and they planned on cleaning up my endo while they were in there. Of course, that wasn't the end of my pain since I had to have my appendix taken as well and then the doctor realized that I had IC on top of everything else. This has been the most frustrating four weeks of my life.

I have been really angry because I haven't been able to acclimate myself to one thing at a time since it all hit me at once. I feel like...well honestly, I don't even know how to articulate how I am feeling at the moment. I think I need some more time to think about what is going on in my head.

I am pretty frustrated with Oxford right now because I go to grad school in England and they are giving me a hard time about giving me the entire prescription of hydroxyzine that the doctor prescribed for me because it is a 3 month prescription. They are making me jump through hoops to get the pills that I obviously have need for and will not be in the country much longer for me to refill it on a monthly basis. As if being diagnosed with a chronic condition was not enough, the health insurance has to make life difficult for me further.

I hate that I am this angry over this. I really hate that I feel like this is going to control the rest of my life. And I hate that I have no one to talk to about this because I have never met another person in my life who has this.

[sandramac]

Lauren
Hugs to you ! :welcome: To the ICN . the people here are amazing. Im so sorry you are so overwhelmed with all that has happened, but I understand how hard the juorney is. Try to get into the patient handbook there is loads of info there on diet, meds & treatments. It a long road but hopefully you will find a good doc & find the right treatment that works for you. have you started a IC journal yet? It is very helpfull to have when you go to the Doc & have all the info on hand for how many times you go a day.All your symptons, are they hormone related etc! Alot of us Ic patients have several conditions ,that is pretty common. I myself took 2 years in Ers begging for help, until i got a dio. Im now on my 4th uro & still am trying to deal with the daily pain .My Ic is very hormone related, It a very frustrating disease ! But i still mannage to work 3 days a week on my feet & also do my freelance work & education. I love my work & that helps keep me going ! Dont give up ! You will find your way and we are all here to help ! PM me if you need a shoulder to cry on or have any questions!
Hugs Sandra:cat: :cat: :cat:

[nolulu]

Thank you Sandra for the welcome!

I looked through the handbook last night and because of it I started a journal this morning. This website was the first one I actually felt comfortable with because there was a wealth of information to read through. I especially liked that thre was a section of foods because it is great that the doctor told me all the things I couldn't eat, but it is much nicer to hear what I still can eat. I also ordered the cookbook that was mentioned because I thought that would make my life somewhat easier.

I guess I would be handling this better if I didn't have the last four weeks of surgical procedures and doctors appointments on top of school work. I have to delay my return to school because I would not have been ready to hop on a plane for seven hours this past Saturday with everything that has been going through my head.

I just have to work on one day at a time.

Thanks again!

[sandramac]

Hi Ladies, Glad you are both slowly finding your way around the boards & IC ! My Ic I belive is a result of 8 years of fiterlity treatment. As soon as I hit day 8 or 9 of my cycle & until I finally get my period Im in Ic agony! I was not able to have a child , but was left with IC after all my efforts ! This is just my own belief ! We are all so complex !Starting a journal is a excellent idea. Then you can see for yourself, what affects you ! Im just so gratefull for Jill & the Icn And the amazing people I have meet here. I concider them all my IC family . Again Lauren be easy on yourself you have had alot to deal with in a short period of time . You are allowed to be mad and feel what you are feeling as ,That is the 1st steps of you dealing with ,what you need to do for your health and yourself ! So give yourself a big hug . I will send one too !
Hugs Sandra :cat: :cat: :cat:

[nolulu]

Thanks Sandra!

I think the IC is a result of my endometriosis which seems to be the bane of my existence. When they removed my gallbladder they found some lesions in there as well. My appendix had other issues, they found a tumor (which luckily was benign) but misshapen. Apparently I have a ridiculous high tolerance for pain because I was having attacks of appendicitis that kept healing itself. I just thought I was having endometriosis pain since it is a constant thing with me. I guess I should be grateful that my appendix didn't rupture.

I am going to slowly work my way around the site and see what information works best for me and my particular case.

One day at a time. :)

[L. Thomas]

LULU622
:welcome:
:grouphug:
:kiss:

[nolulu]

Thanks!

[Curly]

[QUOTE=lulu622]I

I am pretty frustrated with Oxford right now because I go to grad school in England

How are you able to focus on grad school with all this going on. I too am in grad school, just starting, and I cannot focus on it with all the IC stuff. I just want to quit.

[Justalamp]

:welcome: I am so sorry to hear about your diagnosis. But it isn't the end of the world. Although I haven't actually met anyone with IC There is a lot of support to be found here on this website. Educate yourself about your disease. You will have good days and bad days. Just enjoy the good ones when you have them. And Good luck!!!:)

[nolulu]

Curly, I just do it. I am not going to let anything stop me from doing the things I want in life. Luckily enough, I am coming into the home stretch, and I still have every intention of applying for a PhD program. I am not giving in to anything.

Justalamp, I think I was mostly frustrated because I hadn't had a chance to acclimate myself to any one particular diagnosis before being diagnosed with several others. I didn't even write about half the stuff that they found wrong with me. The reason they had to pull my appendix was they found a tumor on it and then it turned out that I have had numerous attacks of appendicitis that has just been healing itself. Besides the tumor, it was misshapen and they weren't sure what was wrong with it until pathology came back with the results saying it was the attacks that caused it to look that way.

I was also informed that my left ovary has been cut in half which is probably because of the endometriosis. The endo was also found in my gallbladder.

So while I was trying to process the numerous medical accounts that hit me, I get diagnosed with IC.

I have been working on the diary and to be honest, except for going to the bathroom more often than I used to years ago (I now go every 2-4 hours), I don't really see much of a change. This change in diet has done nothing to change that and in fact, when I was eating whatever I was eating, I was going to the bathroom just as frequently - not more. and my pain level? A consistent one although I should say zero because I have never had any pain. The hydroxyzine has made me go to the bathroom more times in the night, than without it. Honestly, I am wondering if I have been misdiagnosed.

I am confused on what people consider flares. I cannot find a single definition of what a flare is supposed to be. I think my lack of knowledge on the subject also frustrates me. I spend a good deal of time trying to discover what I can about what I am diagnosed with. I like to be educated on the subject and yet the one thing that people talk about most, I cannot even figure out what they are exactly referring to. You would think that particular phrase would be in the glossary terms and yet it is not.