Finally had the Surgery

[MamaOf4]

I was diagnosed with IC on 8-12-09. However my doctor thought that maybe something else was going on too like Endometriosis. Boy was he right.....Not ONLY did I have some Endometriosis (which he removed), my intestines were stuck to my stomach lining (he took care of that) and then the sad news that I did not want to hear...my fallopian tubes were full and surrounded by fluid and scar tissue...he had to take them both out. MAJOR BLOW FOR ME. I had a tubal done in 04 which I regretted and was holding onto the hope that either I would be one of the few to get pregnant again or I would have it reversed. Now I have neither option and it hurts like heck. I have wanted to just scream and cry to get out the hurt and frustration but I can't because I have to be strong for my family. But it just makes me feel that much more useless. It doesn't help any that I am so confused about the IC and whether or not to apply for disability yet. I am just lost in this sea of pain, frustration, and confusion and I feel like the walls are closing in on me now. Anyone who has any advice on what I should do first please please message me. My doctor has me on Elmiron 100mg 3 x a day but nothing for the pain now (of course I am talking of before my surgery...they gave me 40 Darvicet and 40 Anaprox. for the pain from surgery) and I want to switch doctors because of this but I just don't know. I also feel like I should be on an antidepressant...I am not depressed to the point of hurting myself or anyone else..I just feel alone in this disease. Any help would be greatly appreciated. Thank You for allowing me to rant so to speak.:help:

[MamaOf4]

Update...now I am sick. I woke up this morning coughing, sneezing, watery eyes, fever, and just feel awful!!! If I don't feel better tomorrow I am giong in to the doctors. I ache ALL over and the coughing and sneezing is making my stomach hurt worse at the incision!! UGHHH

[ICNDonna]

Sounds like you may have been hit by the flu bug. I hope you feel better soon.

:grouphug:
Donna

[VickiB]

Wow, just when you think things can't get any worse, eh?

My best advice is to give it some time before making any big decisions on switching doctors and such. Mainly because you've been through something traumatic with the surgery, the emotional upheaval of having your tubes removed :grouphug:, and now catching some kind of bug on top of that! I think I would be a complete mess after all of that!

Considering all you've been through, how is your bladder behaving?

Hugs,
Vicki

[KarenAnne]

I hope you're feeling better. But you do have pregnancy options. If you are able, you can always do IVF. You do not need your fallopian tubes for that. Just throwing an option out there for you so the situation does not feel totally hopeless. Karen

[MamaOf4]

My bladder is pretty much the same. I am still urinating a lot, it was kind of funny because at the hospital the nurse told me I could not go home until I went to the bathroom. One minute later I was calling her in because I had went....no trouble there..lol. She seemed suprised by it. Now it is the normal urniating every 5-10 minutes. The Darvicets help with the pain of everything so that is good for me. I go to the doctor at 1130 to find out if I have the flu or what is going on with the rest of my body right now. There have been cases of swine flu here so I am just praying it is not that!! Thank you all for your support and I will update you when I get back from the doctors today!!


Currently On

Elmiron 100mg 3x a day
Darvicet -N100 2 every 4-6 hours
Anaprox DS 550mg every 8 hours
Pepcid AC before the Anaprox

[maryla]

mamaof4,

You really do have a lot going on and by all means give yourself some time to grieve. It's ok to cry and get angry!

And yes, it seems that IC is a lonely disease. I remember when I was first d'x. I felt like a fish out of water, as if I had been taken from my former life by aliens and dropped on a different planet. For me I have to stay into today, sometimes each moment helps too. But by the Grace of God we have a place here that we can come to where we are understood 100% by others that share our disease.

But as time goes by, we do indeed adjust to what life is now.

As far as an anti-depressant, most uro's will prescribe Elavil. It's also suppose to help with pain. I took it at first and it just made me too loopy, so I went on an other one. but you will soon find that we are all so different in what treatments work for oen may not work for another.


Hugs and blessings,

[MamaOf4]

Can anyone give me any advice on applying for disability? I am in the process of getting all my medical records together and the good thing is that over the last 5 years I have went to the dr. and ER several times for the same abdominal pain and symptoms associated with the IC. But I don't know where to start..how long I should wait...so on. My doctor said that most ppl have this disease for about 5 years before it get diagonosed..sometimes longer. I know this has been a battle for me as they kept saying it was female related problems. Any advice would be appreciated because the bills are piling up and I can't even get my kids their stuff for Halloween which makes me feel AWFUL!!!! Thank You all for your help!!!:help:

[SharonA]

You can find information about disability on this Site. Here is the link: http://www.ic-network.com/disability/

[vm]

Goodness. You have been through a lot recently, huh? :( My hope for you is that once your body has had a chance to REALLY recover from this massive surgery (you had a lot done!) that you will begin to feel a bit better. Well, a lot better, right?! :)

[MamaOf4]

Thank u all for your encouragement and help. It is greatly appreciated!!!

[skeetor]

For a disability workbook to help getting your claim approvedand other great resources go to the ICA website.

[LithEruiel]

Mamaof4,

I'm sorry you've been through so much. The Elmiron has taken away my pain for the most part, so it might help you too. Have you asked your dr about pain meds? Sometimes you just need to ask or make a suggestion. He/she might not really get how much pain you're in.

I hate to say this because it seems to be offensive or something to some people (I don't know why), but have you thought about adoption?

Good luck to you, whatever you decide (on all topics).

Maryla,

I liked what you said about being dropped on a different planet. I feel that way...now much more than I was diagnosed. When I was diagnosed I felt hope. I'm much better now then I was, but I was hoping for more... I feel like an alien in school with all of these people that are healthy and don't understand.

[MamaOf4]

Hi everyone, I know it's been a while since I've been on but things have just been hectic here. It's still not any better and now the holidays are here! I just wanted to answer a couple of questions that I seen here. For my last poster, thank you for suggesting adoption, I need to clear something up though. I am blessed to have 4 beautiful children and it isn't that I want another one, it is just that I do not have the choice to say ok..let's try for another child. I did not plan of having anymore children (although I would have liked 1 more) the part that upsets me is that my choice was taken from me (even though I know we could do IVF or adoption), if that makes any sense to anyone. But thank you for all your suggestions.
Now..about my dr....things are still the same...he does not listen. I had an appointment with my family dr. yesterday to get a referral to switch drs but I was in so much pain I could not get out of bed! So...I have to reschedule and wait longer.
I have applied for disability and am waiting to hear from them for an appointment.
When I got sick after the surgery is was just a little bug...but in October....my daughter came home with swine flu and gave it to my husband and I....take it from me...it IS worse than the flu!! My daughter missed almost 3 weeks of school from it!!! My husband missed a week of work...that was a BIG OUCH!!!
My pain is the same and my surgery did not help matters. My menstrual is 100 times worse painwise and there is something going on. But I have to get another doctor because my drs answer for everything is Ibprofuen (sp) and instills. Neither of them help at all!
Ok well I have to get the kiddos off to school but I want to wish everyone a Happy Holiday and best wishes to all of you. I hope no one is going through the Holiday depression and struggle that we are. Take care all. I hope the new year brings something positive for us all.

[Diamic65]

Wow.. you are having time of it. I hope you start to feel better soon. I had Endometriosis and it was so bad they had to remove everything. I even had it on my bladder on the back side of my stomach and on my rectum. he could not remove all of it. I guess it was going into cancer? I hope you feel better soon.:pray:


DIAMIC65

[Glenda2]

I hope you feel better soon Mama of 4 .

I had a total hysterectomy in the early mid 1980's. Due to severe endometriosis. My ovaries ruptured. I was bleeding internally.

I only have 1 child. (Son ) Just prior to my Hysto.

It would have been nice to have atleast One more child. But I must say this > A hysterectomy , although hard to deal with , it's Fantastic Not to have any more Monthly cycles. I love that fact. Mine were always bad , 3 weeks on one and 1 week off it , only to turn around and do it over and over again.

Try not to let yourself get depressed over all this. You will Feel better soon.

Hopefully your Flu bug will go away quickly. Drink plenty fluids and rest.

[LithEruiel]

Hi MamaOf4,

I'm sorry you're not feeling well. I hope you can go to a better doctor soon. I'm glad I didn't offend you, it's just something I wonder about. I totally know what you mean though...I've never wanted to have kids, especially my own kids...it's just never been in me. I've had a lot of health problems from a young age and wouldn't want to pass that on to children. I figured if I wanted to have kids I'd adopt because I feel so bad that there are so many kids without families...BUT now that I have IC I feel bad that I can't have kids...I mean I probably still can - people do, but it's not a risk I could justify taking. I don't think I could stop taking my meds or stand the extra pressure on my bladder - I already have to go all the time! It's ridiculous since I never wanted to have kids, but I just feel like the option has been taken away from me and I feel like there's some kind of stigma on me. I don't know if that makes sense or not...

I hope you start feeling much better soon :angel: