trouble.. dealing with getting a new doctor

[preggerbuns]

I'm Jenna, I'm 24, pregnant, divorced and diagnosed with IC in 2009. My condition has been poorly managed and I have suffered alot from it. This is my story as of now...

what I'm basically getting at is i found it so hard to deal with emotionally/physically to go through the diagnosing process and here I am starting all over and I'm very nervous.

I was seeing a urologist back home (Washington), and then my divorce hit and I was forced to move to Idaho to live with my parents, and am starting over medically here too.. not to mention 3 days after I got here I found out I was pregnant. 5 months later I am 23 weeks pregnant with a boy! still living with my parents and in horrific pain because my OB refused to treat me for my IC. My UroGyn treated my IC with Elimiron, Gabapentin, Zyrtec, Prelief, Percocet, and valium, and Detrol LA, and pyridium We had discussed when I first started seeing him what medications I could stay on in the event that I did get pregnant and he told me I could stay on the Elimiron and Percocet for sure but we would discuss the others later. Now. Tomorrow I am seeing a new Uro here in Idaho that my NEW OB referred me to (switched OB's cuz the other one really didnt care about me or anything) and since it took so long for me to get diagnosed and start getting relief I am feeling really nervous about seeing this new guy.. I know it takes a long time to establish yourself with your doctors and get comfortable (since IC is embarrassing enough) I am afraid that because I am pregnant he will just write me off and decide not to treat me.. how do you suppose I approach this first visit? I would really just love to find another regimen to work for the rest of my pregnancy until I can get back on my normal medications. I stick to my IC diet and I have Gallstones so everything I eat is limited to begin with. Any advice will help!

Help!

Jenna

Also I have gone through it all and realized that the elimiron does not work, neither does the detrol LA.

Medications that have worked are Gabapentin, Valium, Percocet, Prelief, and Celexa(for depression)

[ICNDonna]

I hope the new doctors work out well for you.

Donna

[greeneyes]

Good Luck with your new doctors and I hope you find relief soon.

[Mothergoose]

I know seeing a new Dr. and feeling like you are starting at square one again is daunting.

Write down a list of all your concerns and questions.

What you have previuosly tried, what worked and didn't work, why it didn't work for you, for example allergies, side effects, just didn't help.

You may also want to write down how long you have been on each med and doseage, and how long you tried things before giving up on them.

Why you were put on each med.

What your symptoms are, everyone is different so this Dr. needs to now what he is dealing with, and which symptoms bother you the most.

If you are dealing with pain, rate it out of 1-10 and what makes it better or worse.

How IC is impacting on your life.

What implications does this all have on your pregnacy etc.

I do feel for you, I just found out yesterday that my beloved uro had to shut his practice down due to medical reasons. It took me tring at least 6 uros before I found him, so I am not looking forward to tring to find anotherone.

Good luck Mg

[preggerbuns]

Thank you everyone. he refused to treat my pain and told me there was no need to be on any medications and that instills would help. well it didnt.. made me bleed for days, I've been miserable crying and can not sleep. and I've started having contractions more often. I told him and he gave me keflex and ditropan I feel like I've gotta pee every 5 minutes and nothing comes out. tried calling nothing happened. he was not on call.. just some A****** who told me to deal until my next appointment on the 21st and that if it gets too bad to go to the er. I was like... yeah that will go over great.. ugh!

NEVER AN INSTILL AGAIN, NEVER.

[Mothergoose]

Sorry for your problems

[hottytoddy93]

I'm pregnant too and having bad flare

These responses aren't very good. Hopefully we can help each other get through this. I'm at 10 weeks. I'm in about a 4-7 pain depending on the day or time of day...worse at night of course! I'm sleep deprived, anxious, sometimes semi-depressed, and apparently the nurse at my OB needs to go back to med school! She told me, "You can't keep coming here every week for pain. You can't take those meds. Go drink some CRANBERRY JUICE!"

I wanted to punch her (hormones!). Are you kidding? I'm very frustrated. I had been unable to get pregnant many years. I went to a fertility spec and all. Then at 40, I unexpectedly (and very happily) get pregnant. Now I have to figure out what to do about getting an OB who gets it! I have been on fed disability for 4 years due to IC and ulcerative colitis. Both are acting up. I haven't been on the forum on over a year because I had started a holistic regimen that was working pretty well most days. Now I'm fearing it's going downhill.
What's with drs still not understanding the severity of IC? it's 2011! I wanna scream. How can we educate them? OB drs need to comprehend this. I am not afraid to speak out. I want to do whatever I can to help others with IC, espec pregnant women because hormones are bad enough without dealing with IC.

I am only taking about 4 Atarax/Hydroxyzine and Pyridium per week and only Tylenol for pain. I have to have the occasional Klonopin for anxiety because my blood pressure goes way up. I try not to take anything. She gave me Ambien for sleep and it's worthless. I sleep maybe an hour or two at a time and about 4-5 hours total with TWO Ambien. Ridiculous! I do exercise regularly but it's SO TOUGH with nausea, burning, urgency, pain, etc. My family is unsupportive and has never comprehended my diseases. My mother thinks it's AIDS because it's autoimmune. Good grief!

I'm here and I understand all of what you're dealing with. Let's lean on one another. It may be all we can do. I feel fortunate I'm no longer needing instills (torture!) or biofeedback therapy for PFD. I can actually pee on my own without a cath now. I try to focus on those positives but fear those days may be coming again soon. I will be praying a lot!

Lauren

[hottytoddy93]

P.s. HI DONNA! still working hard, I see! Good job!

[preggerbuns]

Long post for hotty!

Thank you hottytoddy for your response, was beginning to feel hopeless here!

Tomorrow I have a doctors appointment with my PCP to try and address the issue of pain management in some way since my Uro thinks its absolutely ridiculous to need any kind of pain medication (He put me in a flare with the stupid instills and I've been dying for a week now! I've called and told him and he just tells me to drink MORE water and take Ditropan which does not help) I've had gross hematuria for the week also.. tried to see Urgent care for something for the pain and (of course) doc comes in and says.. we see no white blood cells but we see ALOT of red ones, here have some macrobid... I am like uhh duh I have interstitial cystitis, no infection lots of pain... guy was an idiot and didnt even care to listen. I'm like do you realize that I'm pregnant and I'm already miserable and now to have to deal with MORE peeing issues and your just gonna shun me like that! UGH so frustrated with health care these days.. people really need to be better educated in our condition. It is very serious and very painful and I'm sickened by how much we are made to suffer. Besides my IC I now suffer from Gallstones which I just got out of the hospital for today at 4 pm. I almost had to have emergency surgery to remove my GB but I had severe anxiety and went into shock when they tried to wheel me in for the surgery so it was a no go!

I have been researching so many different concepts and ideas and what i think will be right for me for treatment (NOT EVERY DOING ANOTHER INSTILL) prior to pregnancy Gabapentin, Percocet and Valuim and Zyrtec were all great things for me. Unfortunately due to pregnancy I think I can only safely take Percocet and Zyrtec and even the Zyrtec is iffy. I dont think that I will sainly make my way the rest of this pregnancy (14 weeks left) with all of my symptoms of pain and aching and twinges in my bladder along with more then normal (for me) frequency and urgency along with my gallbladder issues, I am in a deep depression about all of this and not enjoying my pregnancy, but I will not have surgery to remove my GB due to the risk of losing my son during or after surgery that is just not an option, but let me just say because I dont want to undergo someone elses idea of a medical intervention doesnt mean I have to suffer in pain, do I? I certainly hope not. Some doctors are non compassionate to this and its litterally making me never want to see another doctor again! but I intend to fight for what I deserve and on the 21st when I see the Uro if he does not try a different approach with me after I explain to him (yet again) what has been going on I am going to straight up tell him that I'm unhappy with his services and will be seeking another Uro elsewhere! (problem there is I live in rural Idaho) Finding another Uro will be hard and to find someone who understands IC well enough to treat me will be even harder. I wish I had more resources because this is nuts! I wish I never moved away from Washington because I finally had a good thing going with my Uro there, he listened he was compassionate and understood my inability to function on a daily basis and was very interested in working with me on what I thought would work best!

Congrats on the pregnancy Hottytoddy. My name is Jenna if you need anything don't hesitate to contact me! I've only been diagnosed with IC since late 2009 but I've been on so many medications and had even tried to conceive when I was married and was told I would never bare children, surprise surpise! LOL and I figure since I'm a lil bit further along I could shoot you some ideas on symptoms and stuff.. plus my best friend is pregnant, her neighbor is pregnant, my cousin is pregnant.. I'm surrounded by pregnancy! LOL

Things I have tried thus far, and IMO are OK'd for preggercy! but not much work for long!

~Prelief
~Pyridium (very rarely, can discolor baby skin)
~Benedryl
~Claritan
~Tylenol (can help very very little, dont take more then 500 mgs without a few prelief, can hurt tummy)
~Elimiron (been on it since 2009, side effects for me suck)
~Ditropan (can help but I take half the regular dose or I have retention horribly bad)
~Norco (takes the edge off but still hardly bearable for me)
~Instills (SUCK)
~Percocet (rapid release IMO is best for when your in a tift!)
~Baking soda water (Can take the burn away, be really careful lots of sodium)
~IC diet (EH, easier said then done when pregnant, now a days usually anything can put me in a flare)
~Potty bath (will help if you gotta pee and it burns, for me I just pour water on my lady bits when pushing and it kinda helps it come out easier and less painfully)

There trying to get me to go on a daily dosage of antibiotics. but I will not. I've had enough antibiotics for one pregnancy and I feel very strongly against that for me, they put me into a worse flare unless I am having a UTI which I've been cultured for now 3 times in the last week and nothing has appeared.. what a surprise!!!

I dunno if any of this will help and I suggest researching before you do anything so you know you feel comfortable with the risks, but they are my things I've tried to help relieve some of my issues!

[preggerbuns]

Update: seen PCP today

Well OK so I told him everything that was going on... and to my dismay. He decided I Should not be taking the Norco I was prescribed at the hospital (even though I am in excruciating pain on a more then consistent basis), and told me that if I must to only take half a pill. Took me off the Ditropan, Benedryl, and Zofran. Upped my dose of Celexa from 5 MG's to 20 Mg's and Gave me Vistiril because (I look miserable) I explained to him my frustration with being in pain constantly and was worried about taking a category C medication while pregnant i.e. Norco, so he tells me not to take it and will not prescribe me percocet because even though I am in pain its not good for the baby. (don't you think being in pain will not be good for baby either, GALLSTONES are like the equivalent of a heart attack! in pain scale!) So OK to him the benefits outweigh the risks on taking Vistiril but not Norco. makes no sense they are both Category C medications. One is treatment for allergies/anxiety and the other for pain. Makes no sense. I went on to explain to him that if I was unable to take anything for the pain I will likely end up in the ER again. What a frustration. Basically told me to take Celexa and Vistiril and that will fix all my problems and that I can deal with the pain/take some tylenol (had to the nerve to even prescribe 90 tylenol!)... does he not realize how much pain I am in. I was about in tears sitting there when he walked in. I'm afraid to eat and my urinary retention is becoming more and more bothersome!

Needless to say I took the Vistiril and the Celexa a bit ago. I haven't been able to eat today for the fear of another gallstone attack, I could not handle that right now along with the pain of my bladder! I told him the idea of the pain medication was so I could avoid surgery until my son comes and I don't think he is understanding that, even the on call surgeon suggested trying to take pain medication on a constant basis just to get to the end of my road! GRRR. Ok so I am going off key here.. but I am frustrated.. between my flare and my gallstones. I feel like hopeless and I want to die. I'm not sure antidepressants are the answer to this problem! then to make matters worse he wants me to come in for blood tests and a check up once a week until Aidan comes.

Why do I feel like everyone is conspiring against me?

New med list.

~Elmiron
~Vistiril
~Celexa
~Prelief
~Prenexa (prenatal vitamin)
~Loratadine (allergies)
~Tylenol (doc thinks that's gonna help LOL)
~Pyridium (rarely)
~Norco (someone shoot me for taking it!)

[Melanie526]

So sorry...I get so mad when doctors tell me they can't give me anything for the pain...I guarantee if they had our pain, they'd already be at the pharmacy, ready to fill their script...I feel like no one "gets it." It's so frustrating and my depression keeps getting worse each time I deal with a doctor that doesn't seem to understand IC or says the same thing all the other doctors said...it makes me feel more and more hopeless...I hope you can find a good doctor who will help you...no one deserves to be in this kind of pain.

[hottytoddy93]

New drs/limited meds

Hi Jenna!
I have been in terrible pain. It hasn't been this bad in over a year. I went to urologist and he is sending me to pain spec. But we all know that there are very few meds and treatments available for a pregnant woman that are safe. It's very frustrating.
I plan to restart acupuncture as it helped me immensely before. Also, I continue to exercise if I can drive to gym because the beta-endorphins from cardio are incredibly helpful. I'm also happy I found an OB who specializes in pelvic pain...Dr Ling. I saw his name on here as I was awake in the night researching in desperation.
I figure at least we get a "gift" in a few months from this pain and hopefully it will subside or lessen once we aren't preggers! I was diagnosed in 2006 and extremely severe. Then it got better for a while. We just have to keep praying for the good days to come. If I come across anything that helps me, I'll pass it on. I realize prenatal vitamins, sticking progesterone in my vag, and eating healthy fruits was NOT helping me at all! This is why I'm changing OBs...and the fact that her nurse told me to "just go drink cranberry juice!" gee thanks! Should I just set off a bomb in my bladder while I'm at it? Seriously

[hottytoddy93]

Bad news re:Acu while preg

I just got a call that my Acu can't put needles where they will help my IC and herbals are not yet proven safe for preg (which I knew). Once again, told same thing...not much preg women can do for treatment. Ugh! I'm determined to find something!!!

[preggerbuns]

Hey hottytoddy, just got your PM and I will contact you when you say you are free! Sorry to hear about the ACU doc.. figures. I feel lost too at this..

I want to ask my doctor for a referral to a pain specialist but I feel like he will deny me.. (can he even do that?)

I didn't get to see my URO because I had surgery the day before and was hospitalized over night. I am going to reschedule when I am better recovered. thank god my son is doing well! I hit 28 weeks today and am very excited that I am in my 3rd trimester. I feel like there is hope.. only 12 more weeks!

Gosh mama, I really hope your doing well sorry it took me so long to reply! Update me as soon as ya can!!

[hottytoddy93]

Woohoo PREGGERBUNS!

Congrats on third trimester! I reached second! I AM high risk acc to my doctor (OB and pelvic pain spec), but I'm coping with minimal meds because I have been able to now increase exercise. I've gained 10 lb, up to 95! Yay! I was awfully underweight. I eat very healthy, fresh foods. Fruits are tough on IC as are the vitamins, but I'm still taking them. After all these years, my pain tolerance is better. I have to say beta endorphins combat my pain the best! I hear second trimester is easiest so I'm hoping it's true for me. Btw, looks like this baby is break dancing in there! Yours is prob running out if room by now! Hope you are as pain-free as possible the rest of the way!