Encouragement needed

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Hi All,

I am writing this while I am sitting on the floor crying my eyes out because I just want to be me again. I don't want me be in constant pain and discomfort. I am only 23 and I really can't live the rest of my life like this. 

I have had a flare for two weeks, can't work, can't do anything but just sit with a hot water bottle. I want to have treatment with Dr Brinzman but my boyfriend who is struggling with this as he has a high sex drive but I can't donanything, want me to go to the NHS first and exhaust all my options before going for this treatment. I deep down think this is the treatment for me. 

I am already doing acupuncture and going to see a nutritionist soon but Nothing I have done so far has helped. I have only had the pain since december but I feel like if I leave this for longer, it will only get worse. I only have urethral pain/ burning and no bladder pain but I have read that may people start with the urethra pain initially and things get worse. It's probably the worse thing to read things on the Internet but when you feel so helpless, it's the only comfort to read other people stories but it can also be the worse thing as I have read about people with this for 20 or more years.. I know that I will not live with this disease, I am not proud to say but I have look at ways of ending my life. The only comfort I have is that I have this treatment if all things fail but then I get the panic feeling that what if this treatment doesnt work as well. So many of you have been on this treatment for years, how do you keep faith that it will help and is helping and there is an end to this. Sorry for such a long post but in a very dark and desperate place right now.

btarrh's picture
btarrh

Hi, my name is Brittany.  I haven't started treatment yet, but I go to see Boaz on July 9th.  I was in the same boat as you....I went back and forth a million times on whether or not to pursue this treatment.  After doing my research, I truly feel this is the best choice for me.  I know everyone is different as far as symptoms, what led to their IC, and how long they will have to be in treatment.  I have been on a restictive diet since November, but have been on the ICAMA diet for about 6 weeks.  I am slowly noticing a difference already.  I don't have the symptoms you describe, but I do have almost 24/7 urgency.  I feel like I have to pee all day, every day...it's maddening!  Some days are worse than others.  I have felt like ending my life several times, especially when I'm having a flare and feel like there is no end to the pain/agony.  Things WILL get better!  I think back to how I felt 7 months ago compared to today...I haven't even started treatment yet, and I'm already feeling better now than in November.  Keep the faith, and keep reading success stories.  The worst thing you can do is reading bad things on the internet...it makes it so much worse.  Please hang in there, and know there are a bunch of wonderful ladies (and men) on this site to help you through this!  You will know what's right for you in your treatment decision.  I know that I don't want the alternative, which is precriptions and bladder instillations, that may or may not even work!  I have been exactly where you are many times....crying my eyes out for hours on end....just wanting to be "normal".  You will get there!  I wish you the best, and hope you feel better soon :) 

Hugs,

Brittany

cathy's picture
cathy

I thnk a lot of us have been where you are right now, I know before I started treatment I thought at times that I could not live like this. But once I made the decision to start treatment I felt a sense of hope. Before treatment I was taking sleeping pills to get some sleep and having to use hot water bottles for the pain. That all seems so long ago now, I have been in treatment 2 1/2 years now and so so much better, it does not rule my life anymore. My main issue was bladder pain and frequency and then after a while I got urethral burning also. I don't have the urethral buring anymore, I don't really have bladder pain anymore, it is now just an awareness of my bladder all the time, I still have frequency but has improved a lot. At first I could only hold approx 80 ml in my bladder, now when I feel it has been a while since I want and have been dringing a lot I will measure it and just yesterday I had almost 600 ml, this is a huge difference, I never thought my bladder would be able to hold as much again. I live my life and it does not hold me back anymore. When I look back and really think how bad it was and how better it is I would say I am approx 80 percent better. I am positive I will get 100 percent better in the end, I am not putting a time frame on it, I have learnt through this not to do that, it will heal when it's ready. It will take hard work and a lot of patience and discipline do do this, but it is so worth it in the end. Reading about IC online is the worst thing you can do, it got me so depressed and once I started tratment I never went to any IC sites again, just this one. Hang in there and you will get better.

Mrs. A's picture
Mrs. A

I was in so much pain, too, 2 1/2 years ago. I was actually up all night in the middle of a flare reading online in desperation for help when I came across a post somewhere by a gal in the UK praising Dr. B for helping her with IC. I think I read this site for almost three days straight. I figured that if someone flew all that way and got better, then I could make my way there as well. It was the best decision I could have ever made. This year has been the most symptom free for me. I remember following the diet before I started treatment and that helped. I was gluten free and dairy free then, and I still am, so I started on list one. I used to cry and cry in the tub with the hottest water I could stand to try and numb the pain. I am so thankful to Dr. B for helping me get my health back. There is hope! Please don't give up. I am 54 years old and I had IC for 1 1/2 years with such pain, but I couldn't give up. I just felt there had to be a natural way I could reconfigure my body. And there was, thanks be to God. A big hug to you.

Roo UK's picture
Roo UK

 

Hi All, 

Thank you so much for all of your supportive comments. I am so happy that the treatment is working for you all and i will be filling out the new patient form today itself. 

It angers me that there isn't more awareness of this issue. My parents sometimes looks at my like the pain is in my head and because I live at home, i cant get away from that. I have been on this site for endless amount of days and it has been the most hopeful site I have been ok and IC success stories which are patients of Dr Brinzmans as well. I truly wish everyone good health :) 

 

Roo UK's picture
Roo UK

Sorry to ask this extremely personal question and I hope I don't offend anyone but how are people sex lives during this treatment, ofcourse when things are getting better and almost symptom free. I just worry sometimes that I don't want my boyfriend being with me if I can never give him what a 23 year old guy needs. 

cathy's picture
cathy

I am not in a relationship so have not had to deal with this issue. I know some people have problems but it gets better with the treatment also

headley.patty@gmail.com's picture
headley.patty@g...

Roo, this is ALL sovery difficult and we are all very different even in the area of sex. I am 56 and My husband is 72 so we don't look at sex anymore like we did when we were young but this has still been tough on us. I want to say this to you as I would one of my daughters. You are sick and in need of healing. If this young man you are with cares only about satisfying his own needs while you are suffering then maybe its time to re-evaluate the situation. This is a time where you need to put yourself first. It may not even come to this because after the doctors assess your situation they may not see a problem with sex. Alot will depend on you. If it causes you pain and symptoms they will more than likely ask you is it worth it? My husband is very unhealthy and my menopause has caused me other issues with sex so that has been something we have had to be creative about with intimacy. Boaz has been so thoughtful and helpful. Asked me if Ineeded him to talk to my husband. My husband has been such a rock for me through this. I was married and divorced before him because my husband had relations outside of our marriage. I learned so much from that situation. I had put so much into that marriage sacrificing always of myself. There must be a balance of both sacrificing and both receiving. Not one sided. You are worthwhile and deserve tobe treated with love and respect. Sorry if this is too much over the top I just hate to see young women suffer. I hope all will go well in treatment and that you won't even need to cross this path. Hugs to you!

Roo UK's picture
Roo UK

Thank you Cathy and Headley.

The two urologist that I have seen have told me that I was the youngest patient they have had. That's one of the things that gets me down sometimes. This is the time for me to find my path- travel, got out drinking, find a career, but it's all been put on hold because of this and for how long! Will I get better when my 20s are over and will be reminded as a nightmare? I know it's never too late to do whatever we want to do/ want to be, but  I feel like i have lost my youth.

 Headley, I know that my boyfriend loves me but I have to keep explaining to him why I can't have sex and sometimes though he might not want to look sad, he does and I feel like the worst girlfriend ever. Anyways thanks you all for your support and this is the best forum ever. xx 

deir's picture
deir

Roo- don't have a lot of time right now but I just wanted to giv eyou a ((((((((((((((((hug)))))))))))))). I have a lot to say about the sex issue. When I have some time, I will write more. It's ok to grieve right now but you tell yourself- "Just for Today" I have faitht hat you will not always feel this bad or desperate!.