View Full Version : Nobody understands and some questions
09-01-2004, 06:26 AM
I was diagnosed on Monday with IC. My first DMSO treatment is in a few weeks. I felt ok yesterday, but not so hot today. I have burning and pressure today. I was very careful with what I ate, so I do not know. Can "realtions" with a spouse " make it worse the next day. There really wasn't any pain while ....you know things were happening.. I am not trying to be crude, but I really do not know these things and have nobody to ask. Hubby is being pretty decent, asks me how I am doing that day, helps when I do not feel good. But my pain and discomfort are not extreme like others I have read.
I have tried to explain this to my mom, but she has a chronic condition along with some emotional issues, it does not go well. She yells at me about the IC. Why did I get it. I told her nobody knows. She wants to know when I will be better... I told her there is no cure...then she wants to know when some of the meds will work...I told her I do not know...sigh... it was the same discussion we had yesterday. All I know is that she wants me better for Thanksgiving so I can go with the hubby and 2 kids (8 and 1 1/2) for a 7 hour drive to see her. She does not get out of the bed much and won't come here. Then she says that at least I will feel better one day, and she won't ( she has MS and has given up on life...whole other topic...it is enough to make me drink, but that would hurt so I won't go there right now)
Does the Elavil (sp?) make you gain weight. I have just dropped 5 pounds and really do not need to gain weight and grow out of my clothes that finally fit again. Not to mention diabetes runs in the family.
09-01-2004, 06:32 AM
Hello and welcome. I just go my IC news yesterday, too?
I know I have had pain the day after you know what. Also, somtimes a BM followed by a difficult stream can make me misserable all day.
Good Luck, I find a heating pad on the abdomen has worke in the past when I didn't know what I had.
09-01-2004, 06:45 AM
Well, CM, you didn't say what meds you were on, but there pretty sure to be some combination out there that will help you. Read as many threads here as you can, and you'll learn a lot. I studied here for a couple of weeks, took what I learned to my doctor, and am starting on new meds. Elavil was horrible for me. Doxepin works in the same way and I seem to be losing weight on it. Yes, sometimes sex hurts. I take Alka Seltzer and Uristat after. I hope you have something for sleep and for pain. (The Doxepin would help with that too.) SO SORRY about your mom. It can be really difficult for people to understand what this is like, especially when you don't "look" sick. Maybe by Thanksgiving you'll be better enough to make the trip, though if it's a stressful visit . . . well, let's hope not. Happy reading on these boards. You'll meet very helpful people here.
09-01-2004, 06:45 AM
It's possible for almost all IC patients to have a satisfying sexual relationship. It does take open communication, lots of experimenting, and lots of extra lubrication --- even if you think you don't need it!
It can take time to find the best treatment options and discover which foods and drinks are a problem, but most ICers do get there. The information in the Patient Handbook at http://www.ic-network.com/handbook should be helpful to you.
You may be feeling just fine at Thanksgiving --- there's no way you can know right now. Some ICers find travel okay; others can't tolerate it at all. Give yourself some time to heal --- and if you aren't up to travel on Thanksgiving, don't feel guilty about it. It's not your fault that you have IC. You need to take care of yourself.
09-01-2004, 07:19 AM
Welcome, every day is like a surprise, I never knowhow I am going to feel until I get up and get going, Yesterday I was like you in severe pain, today I feel good. Don't allow family to make you feel guilty they just don't understand. I have pulled many sheets off the computer to help inform my family a little so maybe you can give some information to your mom that way. You will learn so much and have a lot of support here because we are all on the same page. Sex for me makes me flare at times, I also have been keeping tabs on what I eat and what activites I do to compare notes to good from bad days.
09-01-2004, 07:54 AM
I want to thank all of you for your help. I am not currently taking ANY meds. My doc wants to try one thing at a time to see what works and what does not. I will write down/print out the names of some of the meds that have been mentioned to show to my doc. He told me to bring what i found on the net to my next visit (my 1st DMSO treatment so we can talk about it) I have a few spare Xanax that i use every other night to help sleep.
09-01-2004, 07:57 AM
Some of us do have increased pain, either during or after intercourse or both. I always go into a bad flare for a few days after a pelvic exam or sexual intercourse, no matter how much lubrication is used etc. Part of the problem in my case is, my husband only likes missionary (worst position for IC'ers) and is very physically vigorous which is bad for my bladder too, no gentleness if you know what I mean. Gentleness and quickness would do my bladder good but instead it's roughness and a long long long time. So after a few times when I ended up in tears during and in excruciating pain after, my husband no longer wants to hurt me that way.
Please don't let anyone make you feel guilty if you are not able to tolerate intercourse. When I first read many posts here, I felt very guilty, because everyone was saying, oh, just use more lube or do more foreplay. Then I realized, not everyone's IC is the same. Some people have mild symptoms, others have more severe symptoms. So never let another person tell you what you ought to be able to do or ought to be feeling in circumstances. Yes, it's true that many IC'ers find a way to tolerate intercourse, and even enjoy it, but there are some of us who simply can not. That does not mean we are wimps, or lying, or crazy - it just means we are different, our symptoms and circumstances are different.
As far as pain relief, I haven't had good luck with pills so far (increase my bladder pain from the irritation of the pills) but I LOVE my hot water bottle! :)
Hope you feel better soon. There's a very good chance you will be feeling just fine by Thanksgiving!
09-01-2004, 08:06 AM
Ah yes, the post-sex flare. It can really be awful, can't it? :( I get it sometimes too. But the good news is -- Donna's right. It's possible to have a satisfying sex life despite the IC. :) First, communication between you and your partner is absolutely key. Next, a willingness to experiment with various positions helps lots; if you're like many of us you will find that certain positions bother your bladder more than others, and by trial and error you'll be able to find out which are which. Third, LOTS of extra lubrication helps reduce the awful urethral burn and other pain... my husband and I like one called Liquid Silk (you can get it at http://www.goodvibes.com or at http://www.drugstore.com in the Sexual Heath Department) but there are many others you can try.
A few other tips:
-- Try taking a Pyridium 30-60 minutes before sex; this can anesthetize your urinary tract a little bit and reduce pain afterwards.
-- Heat packs across your abdomen and ice packs between the legs can really help.
-- A hot bath before or after can relax things and reduce muscle tension.
As for your mom, the others have given you some good advice. Don't feel guilty, and try to educate her a little about the disease by printing out info from this site and others. Also, she may "yell" at you about your IC because she's worried -- my own mother does this to me all the time, and it used to really upset me. However, after discussions with my father, husband, and therapist, I have come to the conclusion that it is just that she is worried and scared when I am sick, and unfortunately has a difficult time expressing it. Knowing this makes it easier to take somehow. She is also trying not to do that anymore, which is really nice too :)
09-01-2004, 11:42 AM
I have had many flares the day after sex even if the sex itself was not painful.
Elavil has made many people gain wheight....sorry I don't know if you want to change meds or what.
Wish I knew how to make your mom understand....just like I wish I knew how to make my mom understand.....I know a mother's understanding is important and we try to gain it....sometimes with time and effort we do get....sometimes we get some but always wish we had more. Let me know if I can help you anymore....
:grouphug: :grouphug: :grouphug:
09-01-2004, 01:01 PM
Hello to both caitlinsmom and Mary, welcome to the ICN, sorry you have Ic but this is a great place.
About the ELAVIL, for some it is great but for me it was hell I have gained 40 pounds from the cravings and such from elavil and it made me a bit nuts too. I am off it now and trying to loose the weightno luck because I can eat so few foods and they are not exactly healthy. It may work for you though so give it a try you will know if you start gaining weight or having sugar cravings and then your Md can take you off it if need be.
Sex has caused me to flare before (but only when I was really really bad) most of the time I am ok but I do take a valium 2-4mg before and use a lot of lube (I like silk-y by KY). I also find that the heating pad or a cold wash cloth between my legs afterward can help. It may take a while for you to work out what works for you- but it is worth it! :woohoo: i had only been married a year when i was at my worst - and diagnosed do it halted our sex life for a while but now all is working just fine again. be patient with yourself and be open with your partner- there are a lot of books that can help at the ICN store online.
PS I just had a one month remission, so have hope too it does happen although I am not sure why.
Welcome again! :)
09-01-2004, 10:05 PM
Post sex is always pretty painful for me. I have mostly urethral problems and my urethra opening and vaginal opening are very close together so sex really bothers me. However, there are alot of ways to get pleasure without really doing the deed if you know what I mean. :) My husband is very understanding because he knows how much it bothers me. On the other topic of flaring and not knowing why. That is me too. Somedays I dont have to eat anything and I flare and sometimes I eat what I want and it never bothers me. Never have been able to figure it out. Good luck with your DMSO. They help me alot.
09-04-2004, 03:24 PM
I have had DMSO treatments several times, I usually have 1 a week for 4-6 weeks, at the time I don't see much improvements but after a couple of weeks, things get better, I take DitropanXL 5mg in morning and 5mg at night, I also take Zantac for my bladder. When my pain is bad I use Zanax to help me sleep, not alot though. When I get my DMSO I have burning for afew hours after, the worst is laying there with the medicine in your bladder, bring something to read to keep your mind off of it, or have your husband go in the room with you to visit to keep your mind off of it, they do help!
09-04-2004, 03:47 PM
Have youever tried Duragesic patches for pain..That would eliminate the pill prob.
09-05-2004, 10:47 PM
I just want to add, its fine for your doctor to want to take things slowly and try meds one at a time. HE'S NOT IN PAIN!!! My first uro decided to try that route. I had 6 months of severe pain. I have gotten bolder at insisting for medications. I know the patient handbook has topics on different medicines. Elmiron has helped a lot of patients. It takes about 6 months to start working, so I insisted on starting that immediately. A lot of people have great results with DMSO, but you need something in the mean time. Personally, I have done really well with Pyridium Plus. It helped with pain and buring. My urologist now says he prescribes this to all his patients and its one of the first things he tries. Heating pads also help with the discomfort. I know ICN Donna had a "survival kit list" of what she takes for flares. I thought that list was a wonderful resource. Maybe she'll post it again. I would call your doctor or go back in and insist on something. You can be nice, but I would tell him how much pain you're in, etc. and that you can't wait months to get your life back.
I hope you improve, soon. I know how frustrating it is to figure all this out. This board has been a great resource for me.
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