View Full Version : Shocked as I have been dx w/ IC
08-23-2004, 09:49 AM
Hi All~ I am so glad to have found this support board and look forward to learning more about IC and the great people here. I went into surgery 12 days ago for a total hysterectomy w/ bladder repair and came out to the shock :yikes: of being diagnosed with IC. I have had 4 laproscopies before & the IC had not been noted. The big questions that are being asked of me, Have I been having problems? etc. well the answer is yes. I have several chronic health ills which include Bechet's Disease- an autoimmune disorder that is a rare form of arthritis. I am 32 and have been diagnosed with osteoporsis and I'm now on HRT following the total hysterectomy due to severe Stage IV Endometriosis. I had a Stage 2 cystocele that was repaired and was from childbirth. I also have peripheal (sp?) neuropathy and will begin treatment for that next week. Currently, I work full time as I am the primary income for our family.
I have been mad that my pains that I mistakingly thought was uterian pain/cramps from the endo. I am quickly finding out that all of that pain is still there and it is from my bladder. While the uro asked, I shrugged my shoulders and just said that "normal" is all relative. Yes, I do go to the bathroom 3-5 times per hour, I thought that was "normal". Yes, it hurts to urinate, it has since I can ever remember so that was "normal" for me.
I suppose I need to learn and understand how to balance this new diagnosis with the others and manage this disease as best as possible. The uro automatically scheduled me for the dimethyl-sulfide coctail treatments but I am now wondering by reading a previous post. Is it common to have increase problems or is there a large % of patients that do? I figure if I have been managing this as is, what is the advantage to the treatments if there is a possiblity of things getting worse. I am a living example of Murphy's Law and if it can go wrong, it does! Any good tips for a newbie???
Thanks for reading,
08-23-2004, 10:10 AM
:welcome: to the IC Network.
I know it's hard to make decisions about treatments. There are some who feel that DMSO has made them worse; others find it helps significantly --- I am in the latter group.
The best advice I can think of is to suggest you read the information in the Patient Handbook at http://www.ic-network.com/handbook --- you can read about DMSO there, as well as other treatment options. And if you're not already following an IC diet, I thing that is one thing that helps nearly all IC patients and I encourage you to give it a try.
There are also some oral medications that might help you feel better. Each of us is so totally different that it's impossible to suggest which treatment might work best for you.
And --- it may take a while to find what works best for you. I do encourage you to keep trying until you find something that helps. It's well worth the effort.
Sending warm healing thoughts,
08-23-2004, 10:11 AM
I had a hysterectomy just about 2 years ago for the same thing. I still have my stage II cystocele because they told me I couldn't have the hysterectomy and the bladder repair at the same time. I have had female issues since I hit puberty so I know how you are feeling. Oh yeah--I'm 33.
Welcome to the ICN! You'll find lots of good information that will help you here. To get started, here's the Patient Handbook link to learn about different treatment options.
It's a good idea to check out the diet also. Here's the link for that as well. I found my pain level dropped a lot after about 2 weeks on the diet.
I've been helped a great deal by the DMSO cocktail treatments. I can now attend 4 yoga classes a week & my energy level is greatly improved. I had the initial series of 6 this summer, felt discouraged, BUT felt much better about 2 weeks after the 6 were over. The cocktail treatments don't work for everyone, but there is no treatment for IC that helps everyone. I'm just grateful it helped me.
For me, Elavil 20mg (tricyclic antidepressant for nocturia relief & pain control) per night & Ditropan 5mg per night, birth control pills, and the DMSO cocktail have been what helped me most. But other people have great success with antihistamines (Atarax or Vistaril) & Elmiron (bladder recoating).
I hope that you find things soon that help you. Sounds like from your history, you're very strong & capable. Hopefully now that you know what you have & get some new options, you'll soon feel better than you've felt in awhile!
Wishing you better days soon,
08-23-2004, 10:26 AM
:hi: :welcome: :) I am glad you found us. Donna has already told you eveything I would say to you. Do take the time to read the information available to you here on this site. Most everything I know about IC I have learned here from the printed info and all the posts from everyone. This is a wonderful and safe place to come to learn and to talk with very helpful and supportive people. :)
Hi and welcome, I know it must have been a surprise learning that you have IC, after you had your surgery, but you have come to the right place for information, support, and lots of caring people. Donna has given you good information, and you will find that the ICN is a wealth of knowlege regarding IC and will be a big help. Welcome hug, and keep us posted as to how you are doing, Iris. :hi: :welcome: :grouphug: :flower:
08-23-2004, 11:43 AM
Sounds like you got quite a lot of good advice already :) So, I just want to add my :welcome: to the others here. I'm sorry you have IC in addition to all of your other health problems; I know it's hard, as I have several other problems in addition to IC too. However, it's great you're remaining strong, and I'm glad you found us... you'll find lots of information and support on this site.
Take care of yourself! :)
08-23-2004, 02:11 PM
:hi: and :welcome: to the ICN.
08-23-2004, 03:17 PM
:welcome: :welcome: :welcome:
I had/have endo and had a hysterectomy for it in January, it made my IC worse but did help my endo....Possibly after you get your IC under control you will feel a lot better. (oh by the way I am 27) Having lots of other health problems I know the shock when what is normal for you is told is far from normal well....(((((((((((((huge hug))))))))))))))
My additional advise is:
http://www.ic-network.com/forum/showthread.php?t=7562 pain managment posted with 4 attachments to help with IC pain.....the last one is a list of ideas.....I hope you can get the help you need. Knowing well that it can take a long time to get symptoms under control this list includes a lot of self help ideas.
:grouphug: :grouphug: :grouphug:
08-23-2004, 05:03 PM
I just wanted to add my warm welcome to the ICN. It sounds like you've been through a whole lot-I'm glad you found us. It looks like a lot of supportive people have given you good advice. It's a lot to take in, so take your time with the news and do what's best for you. If you don't want the cocktails, then talk to your doctor about other treatment options so that you feel good about your decision.
Warm hugs - May you find relief soon!
08-23-2004, 06:42 PM
You came to the right spot for help. Sorry you have to deal with all of this. I got IC at 38 and now have it under control with elavil. You will find many compassionate, helpful people on this site who can answer most of your questions. Good luck.
08-23-2004, 07:45 PM
Hi Anna, welcome to the board :hi:
A total hysterectomy and being told you have IC at the same time,ekkk! *hugs*
Think of the postive side of this horrible thing: no more PMS ;)
08-24-2004, 05:30 AM
I just wanted to say welcome to you as well. You've come to the right place for help, and understanding.
08-24-2004, 07:52 AM
:welcome: I'm sorry you have IC with all of the other stuff going on with you right now. I know that you will have lots of good advice and ideas that will hopefully make you more comfortable and help you get through this difficult time more smoothly. I have a question for you if you don't mind. How do you distinguish between the two pains? If at all possible. The doctors cannot figure out whether the pain on my left side is from the overies, collitis, or the IC. I get the pain two weeks before my cycle and also have a couple days that it feels like severe bruising in the area down there. I also was just recently diagnosed with fibro and psoraitic arthritis. So it is hard to figure out a possible cause. My IC flares with my hormones more often than not. You seem like you may have simular problems just wondering if you have any advice. Again welcome and I hope things look up for you soon. Take care - Chris
08-25-2004, 05:15 PM
Hi Chris, I don't mind at all you asking about how to distinguish the pain. However, I don't know what use my answer will be. Since my surgery, it is now that I am realizing (painfully) that the cramping that I thought was my uterus and endo was apparently my bladder. I find myself saying, ouch, I'm having cramps then I remember I no longer have a uterus so it must be my bladder. All along with all of the pain, it never occurred to me that it could be my bladder hurting. Now my urethal pain is terrible and I clearly know what that is. Mainly b/c of the pain/burning when I urinate. For me, the pain is so constant, I was never able to identify any patterns.I'll tell you though, the pain that I am having now at times feels exactly like menstrual cramps. Since there isn't a uterus, the bladder is what is left.
I hope this helps or at least makes some sense. After spending decades trying to figure out my body and trying to identify source of pain, I know how frustrating it is when you just don't know. I hope you can figure out something and get things moving in the right direction.
08-26-2004, 01:40 PM
Hi Anna! :hi: I just wanted to say welcome and I can relate to what you are going through. Two years ago, I had an abdominal hysterectomy for severe endo which caused a prolapsed uteris. My hyst surgeon swore my quality of life was about to improve 200%. (Pain-wise) Welp he was wrong, my pain worsened and I had vaginal/urethra pain and frequency on top of the cramping and pains. I was diagnosed with IC almost a year ago. I too went through about 4 laparascopies to remove endo and never dreamed this pain was coming from my bladder. And it feels exactly like menstrual cramps to me, too. So I went from having a period once a month to CONSTANT menstrual-type pains. :headbang: I am on Elmiron and 5 mg of Elavil a day..the very next day I was on Elavil my vaginal pain disappeared...still have the bladder pain/frequency though. Everyone responds so differently to these treatments..but for me the Elavil helped get rid of the vaginal pain. I just had my first DMSO treatment today. Regarding your question about increase in problems with treatments: I don't know how common it is that people have increase in the problems at first..but, my uro told me today..it might get worse before it gets better. Some of the medications in these cocktails may increase inflammation at first..but in the long run be of great benefit after the inflammation/pain subside. I learned everything I know so far about IC on these boards, I still have a long way to go. :) I have the book "The IC Survival Guide" it goes into great detail about DMSO (dimethylsulfoxide) treatments, and exactly why they may get worse before bringing some relief,and helps you evaluate the latest medications, treatments, and their side effects. It also has tons of info on diet and lifestyle. I ordered it off this site and refer to it often, it was worth every penny I paid for it. (It's not expensive though) I hope you are able to find avenues that help you soon. :grouphug:
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