Forums:
Hello to all who are reading this, my name is Lindsey and I've been reading through all of your postsa since this past Monday when I found the site. Let me tell you a little bit about myself. In October 2009 I had laparoscopic surgery to remove lots of ovarian cysts. About a month later I remember one day being so incredibly uncomfortable with what felt like a constant full painful bladder, so naturally I went to my dr thinking it was a UTI. The tests were negative but showed I had a very bad yeast infection. I was given an antibiotic to clear up the yeast infection but the bladder pain didn't subside and a week later I went back in complaining of the same issues. The dr said I might have a condition called IC. I googled it and was immediately put into despair learning that there was no cure. The dr referred me to a pelvic pain specialist, I finally got in to see her about 2-3 months after I called to schedule (she's very hard to get into, she specializes mostly in endometriosis and takes a surgical approach to it). Anyways my symptoms weren't as unmanageable as they were that first two weeks but still uncomfortable. She did a test on me where they put some sort of liquid into your bladder and watch your reaction to see how painful it is. It didn't cause my discomfort to increase any so she told me that I didn't have IC but possibly had endo on my bladder or pelvic floor dysfunction. I was all scheduled for surgery but chickened out last minute deciding that I wanted to try and get pregnant before I did any surgery, I didn't want to compromise anything further. So after seeing a specialist and doing multiple treatments with no luck we finally went for the IVF and it worked, I'm now 29 weeks pregnant with a little girl. But to back track a bit, when I first saw this specialist I told him of my bladder issues and he said it was probably endo on my bladder and prescribed me a combo of two medications to stay on for 3 months that is supposed to shrink the endo. I think it pretty much put me into premenopause and I didn't have any periods during that time. It actually seemed to be helping with the bladder stuff but I also went on an
sorry it cut me off! Anyways
sorry it cut me off! Anyways I also went on a diet where I ate mostly raw foods and chicken around that time. My symptoms completely dissapeared over time or I would never have done the IVF. I was feeling great. So I thought for sure that the medication worked or that maybe some endo in there just shifted after that first lap surgery (the dr who did it didnt touch my endo as she wasnt specialized in it, different story dont get me started). So on the day of IVF I had accupuncture before and after. I also had to completely fill my bladder before the transfer of the embryos which was extremely painful but then completely subsided after emptying. That night I started to feel the old bladder stuff coming back and I was miserable and scared, but then it went away completely after about 24 hours. I thought maybe the transfer just aggravated my pelvic floor muscles. OK ARE YOU STILL WITH ME?! I'm sorry this is so long I just want to get some advice from you all. So fast forward to about 2 months ago. I developed horrible IBS symptoms, I had incredible inconsistent and weird looking BMs, diarreah sometimes, and horrible stomach pains after I ate. Dr.s gave me a prescription antacid and told me it was all just a part of pregnancy, but deep down I knew this wasnt normal even for a pregnant woman. I felt so awful. It started to subside and then about 2 weeks after, BAM, middle of the night I wake up with horrid urethra/clitoral/bladder pain. I went into my OB the next day to see if it was a UTI, NOPE. I was SOOOO upset, my bladder stuff has returned. Then it started to subside that next day and I was feeling better but then that night I had severe lower abdominal cramping so of course me and the hubby went to the hospital, I had a UTI! What the?! They just did a test the day before and it was negative. So I went on antiobiotics and its been bad ever since. I go to the bathroom every hour and have these weird sensations in my vagina/clitoral/urethra area that bounce back and forth all throughout the day. On occasion I get maybe 10minutes- 1 hour of relief in the evening. So my questions are, does this sound like IC? Could it be endo? I am so depressed and cant focus on my baby and this pregnancy because I'm constantly thinking about my bladder. I contacted Dr. Brizmans office and they were so nice and quick getting back to me. Dr Brizman wants to wait until I deliver to do any treatment, which I sort of assumed. But recommended the diet up to list 3 and drinking spring water in the meant time. I am so scared and sad. I just want my life back. I dont know whether to go the surgical route to remove my endo after the pregnancy or go see Matia. Any suggestions, advice, support would be greatly appreciated. Sorry for the long story!
hi lindsey, during this most
hi lindsey,
during this most exciting time, i'm sorry you are enduring pain and discomfort. it sounds like you do have ic and although the western docs say there's no cure, i don't believe in them because i've seen very POSITIVE changes in me. end of this month would be 6th month into treatment and i started to notice positive changes within the first two weeks with the strict diet and herbs. the pain started to reduce starting my 3rd month and for the last two weeks, my pain level is 1.5 and there were couple of hrs of 0.5. it was wonderful...i thought i can live the rest of my life like this. my pain level used to be 7 or 8. it's not an easy road to take, but i know it works. i have faith in her....although in the beginning, i was a bit skeptical. i felt like there's nothing for me to lose since i've gone through so much already. i'm so GLAD i went with her. i have gained my life to some extent. i went out this weekend to the movies which i haven't done for a year. lindsey, this can be you. right now, just think about having your healthy baby (i know when your bladder is the first thing and only thing that's on your mind. i was like that last year and felt bad because i couldn't be the mom i want to be for my 2 yr old) now, she has her mommy...in fact, i even volunteer at her preschool in the morning.
hang in there lindsey. you'll be yourself again! :o)
*hugs*
jeez
I would go see Dr. Brizman--that surgery is pretty nutzo. They're going to clean out the endo, and just give you scar tissue.
Your story sounds so awful, I'm sorry to hear it!!!
Thank you junie and
Thank you junie and tinkerbell for your encouraging words during this difficult time. I appreciate them more than you will ever know. When you're so down and depressed even the most simple words of kindness can lift you up even if it's only a little. So if you ladies don't mind me asking, other than the $350 consult fee and $150 follow up appt fees, what should I be looking at price wise for the herbs and whatever else is included in the treatment? I know that everyone's not all the same but generally speaking. Im trying to figure out if we can even afford this and how much to start saving up. Also, I'm obviously having a hard time eating. You'd think being pregnant I would have a huge appetite but it's the opposite and I'm so worried for my baby that she's not getting good nourishment. Any suggestions on what I can snack on throughout the day? I'm just not getting enough calories, the list is hard.
Oh dear. A big ((((hug))))
Oh dear. A big ((((hug)))) for you. I went through infertility- the last traumatic thing in my life before IC. I never had success with IF treatments and it led me down the road with natural treatments (herbs)
I am so sorry you are in pain. It sounds like the antibiotic really pushed you over. Perhaps getting on the diet and just some time will help ease things until you can get to see Dr Brizman.
I know how difficult it can be to eat when you are pregnant but list 3 really makes things easy once you get into it a little.Try to make it an investment for yourself and your baby in a future full of health.
I am not on list 3 yet but the addition of almond butter and yogurt for me will be life changing because they are 2 protein rich things to grab.
It must be very difficult to be in this fearful position and being pregnant on top of it. I was so devastated when I first got sick, I used to say " I don't know how to live like this." it took a long time (like months!) for me to even accept that this was happening. Be kind to yourself. Breathe deep and just get through one day at a time. My advice (which you are free to ignore!) is to stop reading all mainstream info on IC. I really feel that a lot of my extreme panic in the beginning was due to the fact that I had an "incurable" disease. If I had just started with Dr B's vision of hope and the ability for the human body to adapt and change, i would have been better emotionally.
Hang in there. We all feel for you.
Thank you Dier, you are so
Thank you Dier, you are so nice to take the time to reply back. Your advice is priceless, "take one day at a time". Today is my second day on the diet wish me luck!
Hi Lindsey,I had this
Hi Lindsey,
I had this lengthy writeup reply last night and poof! It got lost. Among IC and a list of other symptoms. I have endo, had the surgery last August and can tell you that I’m currently 5 months into treatment, understand how scary this all is. I don’t know whether or not the endo will disappear. I have asked Dr. B several times IF I still have it and she has told me the only proof is to go through another lap. BUT, she did reassure me that other patients she has treated had endo. I was actually supposed to have a dual lap/cystoscopy but the doc’s schedules didn’t line up. I rescheduled twice to get the cystocopy and I too chickened out. A week later, I found Dr. B. This is an incredible journey. I am not out of the woods by any means! However, today, I can tell you that I can function, most especially working in a high stressful environment. Dr. B is right there when I need her.
She is amazing and words cannot describe how excellent she is. You just really have to experience it to understand OR go through her website blog and see the success stories. My diagnosis she gave me is 1 year (I asked), but I give myself 2 years because I have a lot of other issues which have compounded my IC (and still do) which I know effect this illness and I need to go through in getting better.
CONGRATS on the pregnancy! I am a mom of a 5 year old boy. I lost the entire 4th year of his life due to IC. I am determined with the support of Dr. B, these amazing support of the woman on this site, and my own will power to get better. Post 5 months, I’m living again and I owe everything to Dr. B. Some days are good, some bad, but NOTHING to what it was like a year ago. This is my own proof that her protocol works for me.
Take care.
Thanks for your reply
Thanks for your reply Tommygurl. I hate having endo but would take it 10000x over the bladder pain. I'm glad that the treatment seems to be working for you, that gives me a lot of hope. I just wish I knew if I had endo on my bladder, that's the only kicker for me in all of this. Especially since my sister who has very mild bladder pressure around her periods recently went in for a scan and they found a "spot" on her bladder. She has yet to see a urologist but they think it's most likely endo. I don't know I guess I just feel like pregnancy shouldn't make it worse if I did have endo on the bladder. I'm always trying to self diagnose myself, especially since I have two older sisters who have endo and ovarian cysts like me. I liken everything that happens to them, to myself. I wish I could calm my mind down sometimes. So I keep see sawing back and forth between going to Matia after the baby or doing scans first to see if the drs can see anything on my bladder. Uggghh it's just exhausting thinking about it. The only thing I have is my faith and hoping that I am guided in the right direction.
Lynsdey- Faith is huge. It is
Lynsdey- Faith is huge. It is hard to be calm and make decisions when you are in pain and misery though.
I am pretty sure that Dr B would be able to treat you whether it is "endo" or not. More than likely there is more than one issue going on. There is such a huge difference between Dr B/Chinese medicine and Western medicine. Someone- Tinkerbell- i think- said that dr B had said to her "it is all words" meaning various diagnoses. I could very well have endo too.
Dr Brizman's goal is to get the body in balance. That includes all the systems.
I sure hope she can help me.
I sure hope she can help me. Otherwise I don't know if I can deal with this. If I was even just 50% better I could live a happy life. Today I am so grateful for my husband. He told me we will do whatever is necessary to help this horrible discomfort.
This is bad right now but it
This is bad right now but it won't always be like this. Be hopeful that it will get better. The body is never stick. It can change. In your situstion, things might change just from giving birth and nursing. I have heard of many people (not all) who feel better when they are in the breastfeeding/non fertile phase which varies inlength from woman to woman. My IC started the month I got my first post partum period (10 months) while I was still actively breastfeeding. My sister doesn't get her period back until the baby stops nursing completely. My friend who has fribro and vulvadinia also felt good the first few months of nursing. Everyone is different but I am telling you this because it is hard to feel like you are sentenced to this level of discomfort forever.
I have been in the dark scary place. I wish I could take it away from you.
Hang in there.
deirdre