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Thread: Two doctors' opinions
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11-12-2010, 04:17 PM #1ICN Member
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Two doctors' opinions
So today I went and saw my OB/GYN because my husband and I may want to start trying to get pregnant, maybe in a few months or a year.
Anyway, previously my IC specialist told me that I can take my medications, Elmiron, Elavil and Hydroxyzine, until I get a positive pregnancy test and then stop. My OB/GYN today told me I have to stop the Elavil and probably the Elmiron before I even start trying, because the first couple of weeks of pregnancy are crucial and I may not know I'm pregnant immediately. Now I'm confused. I am scared to stop taking my medications because I'm going to be in pain and get bad frequency. If I even forget my meds for a day I can feel it.
What have others done on this board? I'm getting two totally different opinions from my two doctors.
Thank you!35 Years old, live in Northern California
Update! Feeling much better these days and can usually live my life! I've had severe IC symptoms since Nov '08, and I've had treatments since June '09. I'm so thankful for the info on this forum to help me get to a place where I can feel okay.
Pelvic pain began July 2008. Urinary frequency began in November of 2008. IC Doctor says I'm one of the worst frequency patients he has had.
Cystoscopy showed evidence of glomerulations on the bladder.
Main symptoms: Frequency, burning pain. Sometimes I feel I have to go even after I empty my bladder. Completed 8 months of physical therapy.
Currently on: IC Diet, Elavil (30mg), Elmiron since June '09 (500mg/day), Hydroxyzine (50mg), Alesse Birth Control to regulate hormones and monthly maintenance PTNS.
Previously tried and quit: one series of six instillations, Neurontin, Ditropan, Oxytrol, electric stimulation to the pelvic floor, Desert Harvest Aloe, Cystoprotek and Flomax.
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11-12-2010, 06:20 PM #2Support Leader
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I can see each doctor's point of view, and yes the first few days you may not know you are pregnant. The problem is no one here can really give you that advice....it could be too dangerous. Have you thought about talking to a pharmacist? You might get a more unbiased answer that way.
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11-13-2010, 12:54 AM #3Forum Manager
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Since you've heard two opinions, you might want to seek a third.
DonnaHave you checked the ICN Shop?
http://www.icnsales.com for US & Canada
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I am not a medical authority nor do I offer medical advice. In all cases, I strongly encourage you to discuss your medical treatment with your personal medical care provider. Only they can, and should, give medical recommendations to you.
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.....My Meggie.....
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11-13-2010, 10:24 AM #4ICN Member
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I think every doctor out there will give you a different answer! I'm pregnant and taking Elavil (although I didn't start until the second trimester) and I know other pregnant women who are also on Elavil. I believe there are also a few from this network that are taking Elmiron, so really, it just depends on which doctor you see... In my case, I researched the pros and cons of taking Elavil then went to my doctor with the information I had, he researched it further and told me to go ahead with it. I'm still scared that it might have an affect on my baby but I weighed the risk v. the pain and decided to take it.
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11-13-2010, 10:29 AM #5ICN Member
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I had pretty much the same situation. My uro said I could stay on my bladder meds until I got pregnant. My ob/gyn said go off them first. I decided to go off of them and did fine. By that point, I was only on Ditropan XL. It worked for me. I went over my concerns with my ob/gyn, though, and needed a plan for pain management if I should need it. I have no answers as to what is safe and what is not by any means. I would suggest either a third opinion like Donna said or talking with your ob/gyn about how to safely manage your IC while TTC without having meds. Good luck!
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11-16-2010, 07:01 AM #6ICN Member
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sticky
hi-
so it is sticky isnt it? here is MY experience. I have 2 healthy girls.
My uro wanted me off everything but really had zero part in management of either pregnancy. I went to 4 different OB's/ perinatologists to get opinions and find one to work with----8 weeks into 1st pregnancy i fired my OB and got a great one. Ive had 2 kids in 3 years (last 8 weeks ago). I stayed on meds each pregnancy including my elmiron. I did change to diphenhydramine the 1st trimester from hydroxzine but i resumed it due to misery at 14 weeks. I took pain meds and did bladder instillations. I talked over all meds/ risks and benefits with my OB. I called the CA tetrogenic hotline and learned no med had any known birth defect that i was on.
For me it is what do i need to take to have a tolerable pregnancy and healthy kid? I was happy with my decision. I did not go ino remission with either pregnancy but i am in a honeymoon period post delivery with this one.
happy to talk anytime- pls PM me! Good Luck
I am blessed to have an Indiana Pouch now....I am glad I did it even though it has been a long road to recovery! 
IC since childhood, finally diagnosed at 31 yo
PFD/Pelvic Pain,Allergies
Low Back Pain s/p spinal fusion at 19
Hydrodistension 2001, 2005, 2011 w capsacian, 2011 with botox/ super pubic tube
Interstim trial and removel 2002,C-Section 2007 and 2010, Post Partum Depression, post partum hypertension, Idopathic hypothalmic amenorrhea
Radical Cystectomy with Indiana Pouch 2/3/12
Hysterectomy 2/3/12, Wicked UTI 3/12, another 5/12, another 6/12, Nephrostomy with poor L ureter flow on L side (OUCH)----scheduled for more surgery Aug 2012.
Meds
Iron 2 x a day, Vit D- 2,000 u 2 x a day- playing with dose, Vit B complex, Ambien 10 mg at night
Aspirin 81 mg a day, fluoxetine 60 mg a day
Docusate 2 2x a day, Mirilax daily (bad at taking, pay for it
), Vit C 500 cc day
Methanamate-1 g daily, Ibuprofen 2 x day
Valium 10 mg suppository TBD?, Norco 10/325 as needed
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11-16-2010, 07:03 AM #7ICN Member
- Join Date
- Apr 2002
- Location
- Durham, NC
- Posts
- 611
Oh
I live in Northern California too!
I am blessed to have an Indiana Pouch now....I am glad I did it even though it has been a long road to recovery!
IC since childhood, finally diagnosed at 31 yo
PFD/Pelvic Pain,Allergies
Low Back Pain s/p spinal fusion at 19
Hydrodistension 2001, 2005, 2011 w capsacian, 2011 with botox/ super pubic tube
Interstim trial and removel 2002,C-Section 2007 and 2010, Post Partum Depression, post partum hypertension, Idopathic hypothalmic amenorrhea
Radical Cystectomy with Indiana Pouch 2/3/12
Hysterectomy 2/3/12, Wicked UTI 3/12, another 5/12, another 6/12, Nephrostomy with poor L ureter flow on L side (OUCH)----scheduled for more surgery Aug 2012.
Meds
Iron 2 x a day, Vit D- 2,000 u 2 x a day- playing with dose, Vit B complex, Ambien 10 mg at night
Aspirin 81 mg a day, fluoxetine 60 mg a day
Docusate 2 2x a day, Mirilax daily (bad at taking, pay for it), Vit C 500 cc day
Methanamate-1 g daily, Ibuprofen 2 x day
Valium 10 mg suppository TBD?, Norco 10/325 as needed
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11-30-2010, 01:44 PM #8ICN Member
- Join Date
- Jan 2009
- Posts
- 905
Thank you all for your responses. I just left a message at Kaiser to ask for a referral to a high risk OB. I can't consider just going off my meds. The burning and frequency gets so bad I'm not sure I could successfully manage a pregnancy under those conditions. We are not going to TTC until there is a real plan down for how to manage my IC during pregnancy. Thank you all for your great responses.
35 Years old, live in Northern California
Update! Feeling much better these days and can usually live my life! I've had severe IC symptoms since Nov '08, and I've had treatments since June '09. I'm so thankful for the info on this forum to help me get to a place where I can feel okay.
Pelvic pain began July 2008. Urinary frequency began in November of 2008. IC Doctor says I'm one of the worst frequency patients he has had.
Cystoscopy showed evidence of glomerulations on the bladder.
Main symptoms: Frequency, burning pain. Sometimes I feel I have to go even after I empty my bladder. Completed 8 months of physical therapy.
Currently on: IC Diet, Elavil (30mg), Elmiron since June '09 (500mg/day), Hydroxyzine (50mg), Alesse Birth Control to regulate hormones and monthly maintenance PTNS.
Previously tried and quit: one series of six instillations, Neurontin, Ditropan, Oxytrol, electric stimulation to the pelvic floor, Desert Harvest Aloe, Cystoprotek and Flomax.
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