very unhappy

[samik]

I had my ovaries out last October and in December I woke up one morning and I felt like I was 9 months pregnant with a bladder infection. Of course, I had no infection. I had just taken my son sledding a few days before and fell off the sled hard, so I don't know if that or the ovaries being gone caused this? My doctor's really can't find anything conclusive on any tests. I had a hydrodistention and found some glomerulations. That was awful. I have had lots of hormone therapy and that hasn't really helped either. I am on my 3rd. doctor and I am now on my 5th. dmso instillation. I have had some inprovement but not a lot. I am so depressed that I have been having some pretty bad thoughts lately and I am scaring myself. I am married and have a 7 yr old boy. This has caused such problems in my relationships and I am on the verge of divorce. I don't even want to be touched. I can't sleep because I am up0 peeing 3-4 times a night. I cry almost all day everyday and I feel like a complete burden to everyone. I just do not think I can handle this life anymore. Before this I only peed maybe 5-6 times a day and 2 times at night. I really never had bladder problems before this and I don't understand how it can just come out of the blue???? Urgency is my main problem. Sorry to go on and on,but I have no one to talk to. Thanks!!!!!!!!!!!!

Diagnosed with dysplasia in 1998.
Have always had severe periods and cramps and bleeding.
Diagnosed with endometriosis in 2002,had 3 laparoscopies to 2005. Had cervix and uterus out due to heavy bleeding in 9/05. Endo came back in 2007. Ovaries out in 10/07.
Diagnosed with IC 12/07.
Bladder hydrodistion 12/07-made everything worse!
Cystoscopy and urodynamics testing 2/08- everything ok.
meds i am on: dmso instills #5, Prosed ds, nuvaring for hrt
meds I have tried: Pyridium, Atarax, lots of hrt meds(patches, pills and compounded meds), vesicare, Detrol LA, oxytrol, oxybutyin, some other OAB meds- none of these helped at all.

[yvette]

Wow! You've been thru a lot! There are a good chunk of ICers who felt their IC was brought on by some operation in the pelvic/abdominal area. See if you can get some medication, even if it's just to get you thru this difficult time, when you are trying to wrap your head around this awful disease. Things like Pyridium Tab Plus can help with that feeling of needing to "go" all the time. Elavil can help at nite so you can get some rest. And doing the IC and/or elimination diet can help in the long-run too.

:welcome: And post, post post about anything. You're never bothering us...that's the whole point of the boards. Posting about our different experiences can only help! :)

[Briza]

Hi and welcome:hi:
Yes you have been thru the wringer and it is not uncommon for IC to come up out of the blue, as it did for me, without prior urinary problems. I suspect that a high impact car accident may have triggered my symptoms, but really no way to tell. But Yvette is correct in saying that many report that their symptoms started not long after an abdominal or pelvic surgery. That itself is a a type of trauma...exactly why it seems to trigger IC is unknown, but believe me, you are not alone in getting this seemingly out of the blue. I am sorry you are having to deal with all of this. I too in the first couple years just did not want to be touched..when my IC flares my skin becomes hypersensitive to touch and being touched causes me great discomfort and makes me irritable. There are SOOOOOO many meds to successfully treat your symptoms and remissions DO happen. I have been in remission since February....my first symptoms I believe were NOv 2003, but defiinitely after finding the right combo of meds my symptoms dramatically and increasingly improved over time. SO hang in there, yes you may well be in for ride regarding multiple drs and treatments and such before you find what works for you. We have ALL been thru that and we are still standing (or posting ;)) You've come to the right place....have you tried any meds or treatments other than the dmso instills? If you care to share what, if anything else, you have tried, then we will be more able to point you in the right direction and provide better support.
Glad you found us. Best wishes,Bri:)

[dverba]

i feel your pain. you are living my life. i just got the ok to take a 2 week leave of absence from work. my husband does not want to be around me right now. he said he loves me but he needs a break from all the suffering and drama. Must be nice for him to hava a break. i am going to go stay with my sister for a week or so. i told my kids mommy was just going on vaction. my youngest, 9, was not happy but at least she has a good feeling about mommy getting to go see aunt Kimmy.

i am still having very bad thoughts that scare me too. i am trying to find a dr that deals with the mental side of me. i am so unhappy, i just need a break. start looking now at getting professional help with this! do not put it off. private message me if you want. i am feeling the same way you are and i know how worried and serious you are. we will think good thoughts together:angel:

[vm]

My IC started a month after abdominal surgery - my second c-section. And when it hit it was full force one day from out of the blue. I was sure I had a bladder infection, too!

Hang in there, OK? One of the worst things about treatment for this disease is how long it can take to find a combination of meds that will help. One of the "good" things is that most of us DO eventually find that combination, but getting there can feel like a long, dark road.

I'm glad you're having some improvement with DMSO. I have never had instillations, but I do know that for some people who have them done it can really take a series of them before they begin to notice a real difference.

[c2miracle]

Just chiming to say my symptoms started after I had a hysterectomy. Maybe there is a link? Think Positive! :smile tee

[Claredale]

Mine came from out of the blue. We were on our way on a family vacation "car trip" when I noticed that I was the one asking to stop all the time. All that week, I was up several times at night and had a hard time waiting in any line. We spent several days at amuzement parks. I even went to an urgent care place to see if I had a UTI, but nothing. When I got back home, I went to my reg doctor, then my gyno, who referred me to a uro. I was fortunate that I was diagnosed so quickly (within a few weeks) especially 20 years ago. The only thing I can even think might have been the cause was stress, but it wasn't major stress in my opinion at the time.

I remember when my doctor first saw the size of my bladder, he made a comment that he couldn't believe I hadn't complained about any bladder problems before, but I hadn't had a single issue.

I wish they could find what the causes are!

[samik]

I just wanted to say thank you to those of you who posted a reply to me. I am only 30 and it is very hard for me to accept this. All of my friends goung out and having a good time and I can't. I was on amitriptyline for about 10 years for other things and when this all started it didn't help at all, so I stopped taking it. I am thinking about taking some supplements. My doctor called today and they want to put me on an antidepressant. I have been on those since I was 15 for an eating disorder. I finally stopped taking them in 2003. I didn't want to be on something my whole life. I've only tried the other meds I listed in my other thread. DMSO and hydrodistention are the most invasive things I've had done so far. I see my dr, on 12/09 to have a follow up and discuss what to do next. I think she's going to try Elmiron. I just want to feel better for the new year. I could use a Christmas miracle!!!!!!! I just feel like such a bad mom and wife. My husband said tonight that he doesn't know what to think about us anymore and that maybe he should just leave? I love him but he just doesn't understand how I feel. He never gets sick. I am also on a wheat and gluten free diet. Also no preservatives, additives or colors. I also am only eating organic foods. I've been doing this for about 2 weeks now. This is very similar to the IC diet. It's too early to tell if it's working or not. Anyway, Happy Thanksgiving to all of you.

[hdb1982]

Can you find a doc to rx you anything for pain? When we are in pain constantly it makes our body hypersensitive to everything. Also a lack of sleep makes things so much more intense. I found, throughout the course of my treatment, that pain control and good sleep make the biggest difference in how I feel. Once I got my pain under control and started getting good sleep I felt so much better. I take Ambien 10mg at night for sleep. Tho I still get up to pee, as much as I always have, with the Ambien I am able to go right back to sleep after I am finished. When I don't sleep well, I don't handle things well. Maybe if you got a light pain med and a sleep aid your body could finally rest. Like I told my doc, I felt like my body was constantly battling itself, always tense and tired. Sleeping good and easing my pain made the biggest difference. If I had to choose 2 meds I couldn't do without, it would be the pain med and sleep aide. I hope things improve. As you will see in my sig, I also battled dysplasia prior to the IC diagnosis and believe in the bottom of my heart they are related.