View Full Version : Frustrated
02-12-2008, 08:23 AM
I am 33 yrs. old and mother to one beautiful, 5-year old son. I was diagnosed with endometriosis in 1990, IBS in 1991, and IC in 2000. I have had chronic pelvic pain for as long as I can remember, but the IC never bothered me much until about 3 years ago. My uro and gyno sent me back and forth to each other, each insisting that the pain was from the other problem (endo and IC). Neither really tried to treat anything aggressively. Gyno insisted I need a hysterectomy. Uro said use Prelief and DMSO. I refused the Elmiron up until this December when I had a cysto and was told that I had one of the worst cases they had ever seen. I started taking the Elmiron and Enablex on December 12, 2007, which is the same day I had a cyso and laparoscopy for endo. Elmiron started to help.....then I got pregnant. The doctors made me get off of all medicines. I was basically told that all I can do is take Prelief and Tylenol. I feel like I'm about to lose my mind, my marriage, and all my courage. I am in so much pain every day. Any advice or encouragement would be much appreciated. I do have 2 sisters and a brother who also have IC, but not with pain, only urgency and frequency. I read about Desert Harvest Aloe, but is it safe during pregnancy?
02-12-2008, 08:43 AM
I'm so sorry that you're having a rough time. I know there are some members here that are pregnant and have been allowed to stay on some of their meds. Perhaps you want to look for a high risk obgyn who would be more familiar with patients taking meds while pregnant. Maybe a high risk obgyn would allow you to be on some meds that would help with all of the pain you're in. I can't imagine having to deal with all that pain every day and not being able to take any meds besides prelief and tylenol. I don't have any other suggestions though since I didn't know I had IC when I was pregnant. I hope you find something that will make you feel better. :grouphug:
02-12-2008, 09:16 AM
I think you may just need to find a new Ob and/or Uro who will treat you while you are pg. Elmiron is a Category B drug.....some of the safest. Yes, there are always risks with any medication while you are pregnant, but a Category B is pretty safe.
I talked to my Ob already about IC and what will happen when I get pg (assuming the pg doesn't put me into remission) and she was cool with me staying on Elmiron. Worst case scenario.....she said she would treat the pain while I was pg. She said she has had many patients who needed long term pain management while pg and did just fine…babies just have to stay in hospital a little longer and may need to be weaned. She wasn’t worried about the IC at all. (She is more concerned about us getting a genetically healthy child--2 losses due to chromosome abnormalities). Although she did want us to wait until we saw the pelvic pain specialist and get his blessing before getting pg…in case he wanted to do any more tests.
I would talk this over with your OB and if he/she isn’t willing to help you, find a new one. I personally believe the stress of pain is more damaging than the pain meds.
02-12-2008, 09:27 AM
I may not be much help because I don't have an answer for you specifically, just some ideas. CystoProtek or glucosamine have a similar role as Elmiron, rebuild the bladder lining. Can you take something natural? I'm not sure of its safety in pregnancy. As with any products, always check with your doctor first. I don't know about the DH aloe. You could email Pat Criscito at Desert Harvest. Her email is: firstname.lastname@example.org.
I know some people do great through pregnancy with no meds or supplements! Something about the hormones that the bladder seems to like.
02-12-2008, 11:31 AM
I have thought about a high-risk obgyn. There is one about an hour away from my town, but it would be worth the drive. My present OB and Uro got together about my condition. Supposedly there is a new study that just came out which found that Elmiron causes eye trouble in children when mother's used during pregnancy. They are born without problems, but the eye trouble develops later on. I can't find anything on that study anywhere on the net. The last time I got pregnant (about a year ago), I was seeing the same doctors, but they allowed me to take Macrodantin 1 x day and Tylenol 3. I don't know what's changed with that all of a sudden. Unfortunatly, I miscarried. Sometimes I just feel that they have thrown their hands up and don't know what to tell me anymore. Thanks for all the advise. It's nice to know there are others out there that know what I feel.
02-13-2008, 07:05 AM
I have a high risk OB and LOVE her. So much better than regular Ob in my opinion....and totally worth the drive for you. They tend to have less patients meaning more one on one time with you, and seem much more knowledgeable about drug interactions, etc. than regular OBs...and much more likely to treat rather than to tell you to suck it up. In my last pg I had morning sickness so bad I lost over 10 pounds my first trimester. I couldn't eat anything. My reg. Ob at the time gave me something for nausea (After begging her), but it really didn't work. When I switched to the high risk OB, she immediately gave me Zofron which was a god send. It is very expensive so most drs don't prescribe it for morning sickness, but worked so well.
My perception of regular Obs may be skewed a little as they really seem like nothing more than cattle herders (not to say pg women are cattle)....but that is the impression I get......too many patients and it seems more about quantity than quality.
Just my two cents.
02-13-2008, 08:55 AM
I worked on a high risk OB unit in a hospital for quite a while when I was working as a RN and I would definitely recommend a high risk OB or perintologist. They are wonderful, informed doctors and if they don't know the answer to something they find it! I had 3 high risk pregnancies and would never do it without a high risk doc. It's worth the drive, and the peace of mind you get from knowing you're getting the best care you possibly can.
02-13-2008, 10:32 AM
I have my next appt. with my regular OB Friday morning. If I don't feel satisfied after my appt., I will definitely look into the high risk OB. I am only 10 weeks right now, so I have a long, frustrating way to go. I did see a high risk OB a few times during my first pregnancy for possible HELLPs, and I really liked him. My regular OB sent me to him. I'm going to ask about seeing him again.
I can't give you any advice on taking meds during pregnancy. My IC symptoms first began in the first month of my pregnancy. I wasn't diagnosed until after I delivered. That first trimester was the worst I ever felt in my entire life combined. I took pyridium several times to deal with the worst pain. It did get better. The second trimester was much better--tolerable. I was prescribed an anti-spasmodic (urispas, maybe?), but I never took it because I didn't want to take any additional meds and the pain was never as bad as the first trimester. The third trimester wasn't too bad either, except the constant need to urinate. If it turns out that you can't take meds, know that you can survive this and it most likely will better during the rest of your pregnancy.
02-15-2008, 10:05 AM
Thanks for the support, Lori. I had a visit this morning and the doctor put me on Macrobid for 7 days and then Macrodantin 1xday for the rest of the pregnancy. He also gave me a script for Tylenol 3, but wants me to wait 2 more weeks (after 1st trimester is over) before taking it. I keep running a low grade fever, so he wants to prevent any UTIs. I am beginning to be able to control my flares a little better through my diet and Prelief. I was a little more encouraged after seeing the baby move on the ultrasound today. I know there is light at the end of the tunnel.
Now that I think about it, I was given Macrobid twice while pregnant: first trimester and at about 6-months-pregnant. It improved my symptoms dramatically. I asked the dr. why it would help, and he said that antibiotics have inflammatory properties. I knew nothing about dietary changes and prelief at the time because I wasn't diagnosed with IC until the baby was 3-months-old. Maybe they will help you.
I know you are absolutely miserable. I remember being in so much pain that I couldn't sleep for 5 days straight (along with nausea, acid reflux, etc.). Dr. gave me meds for the nausea and acid reflux. It seems like forever, but it isn't. If you can avoid taking meds, do it. It's better for the baby, if you don't take meds. If you are so miserable that you want to end things (and the thought crossed my mind a few times!), then take the meds. Do what you have to survive. Meds aren't likely to harm the baby--it just that it's preferable not to take them. I'm taking meds while breastfeeding--after consulting with my dr. and pediatrician and lactation consultant--I didn't start until the baby was almost 8-months-old. I had to balance what was best for baby and me. Anyway, my point is that the IC meds, if you are prescribed, are some of the safest out there and not worrry, but if you can try to avoid them.
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