Please advise (posted in other threads also)

[Lexx]

Hello,

I am not sure where i should post this, it will be long and cover many subjects, so i will copy and put in other threads, hope thats ok.

My loving partner read some of the posts yesterday and I found out this morning that he used my log in to post in the relationship threads to ask how best he could help me, although he asked for any replies to go to his email, the reply went to me, so i got to read what he put. It was lovely and made me cry. I have had IC for over a year now, and registered to the ICN in August 05, yet have only just plucked up the courage to post here.

I will try to explain my story as best i can.

I was fit and healthy until Nov 04, and it was then that i started to experience what i thought was just a uti, i did the antibiotics but did not get any releif. I live in the UK, and IC is not that well known about. I have seen no less than 15 doctors all of whom said i was to young to have a bladder disease (i;m 27) and they had never heard of IC!! I only found out about it from researching on the internet and practically diagnosed myself!

After many months of discomfort and sheer pain, i was put on strong painkillers and sleeping tablets and basically told to go away and get on with life!! I became very persistent as i could not cope at work any longer and this was ruling my life, I eventullay (jan 05,) had a laproscopy whereby it was discovered that i had mild endometriosis, the hospital i was in did not have the equipment to deal with the cells and just sowed me back up agian and sent me home!! I took it upon myself to go privately for laser surgery to remove the endometirosis, as i was then led to beleive that it was just the endometriosis that was causing all my bladder pain and pressure!! I trusted the so called "experts" and went ahead and paid £3000 for private surgery!! It made my bladder worse, yet thankfully all the essential baby making organs were not affected.

I had a 2nd cystoscopy at the same time as the laser surgery and was told i probably had IC. I went into shock and cryed my heart out, as i had read so many horrible things about IC, and was barely coping with having surgery for endometriosis. At the time my partner wasn't supportive at all and not long after he made me leave as he could not cope and wanted a "normal llife! like we used to have. Thankfully (as you see from his post) he is more understanding and helpful now, yet at the time it just sent me into a deep deprresion, and with all the pain and trauma, i subsequently lost my much loved job with social services.

I went to see an IC specialist, or at least thats what he likes to call himself! It was a 3 hour drive, but happened to be in the town i grew up in and where my family still live, so that helped, as i had become very lonely and lost living in the south of the uk, with very few friends, it made it even harder to cope.
He did another cystoscopy, yet said that my bladder looked normal and could not diagnose me! He did urodynamics and said that I had reduced bladder capacity but that was it, so sent me home!!!!

I kept on his back, and made many phone calls and wrote letters to him, saying that if i eat normally i am in intense pain, and i cannot keep taking sleeping pills, this was ruining my life!! I soon got a call saying that he had now brougt the potassium test to the uk, and was the only consultant in the uk that could perform it and suggested i have it done. At the time he said i would have to wait anoter 2 months, but i pleaded to have it done immediately, it got so bad, my mother rang him to plead he do it straight away as i was becoming suicidal.

Well i had the test done and sure enough it revealed my worst fear, i had IC. I was put on Elmiron, told to stop crying and sent home!

I have now been on Elmiron for 6 months, yet despite having an extremely bland and not very varible diet, i still get a flare up every week. I stopped the Elmiron a while ago for about 3 wks due to dental work, and since restarting, the flares have become more frequent! I tryed to get some advise from my consultant yet was told by his secretary that i would have to wait for my follow up to find out if the gap may have hindered any progress. My follow up appontment isnt until late feburary!! yes 8 months after diganosis!! I am wondereing now if the Elmiron isn't helping at all?? I went to see a different consultant to ask his view in sheer despiration, he said Elmironn is a waste of time and i should start Cystastat, has anyone gone back to normal life and can eat, drink, be pain free with this?? I know that i will have to fight for the cystastat if i have it, as i am out of area from the hospitals that do it, but i am now very used to having to fight.

I am still waiting for my follow up after my surgery for endometriosis which was 9 months ago!! Does anyone else have endometriosis, and had laser surgery and now ok?? More to the point, has anyone had mild endo, had laser, has IC and managed to go back to normal life and have a family??

I am desperate to have a baby, and have been told i need to try before i am 30 to stand a better chance, i am 28 this year, yet as i have not got this evil IC under control i daren't try and sex isnt all that frequent as i am in pain too often. I was told by my old Gyn that i should try within a year of surgery for endo which only leaves me til April this year! Yet how can i even think of trying, when i can't get enough nutrition for myself let alone an unborn baby?? Can anyone let me know that they have been ok through pregnancy and afterwards and are now ok and so is there baby?? Everytime i try the elmination diet it seems i flare even at the sight of a new food, so have given up for now, as i am in pain more often than not so would not be able to tell if something has affected me. How do i stabilise this horrid disease???!!

I really hope that you have all kept reading this, i am so sorry that it is so long. As you can tell, i am very lost and feel very frightned for my furture, please only post with positive replies i really could not bear any horror stories. My consultant has already given me horror stories that i will have to put up with the pain and the only 2 people he has seen go through pregnancy with ic, had a horrific time one even had to have her bladder removed!! Not the encouragement i really need!!

Thank you so much if you have read all of this and for any replies and happiness and hope you can send my way.

Alexis

[traceann]

Hey Alexis! :) I think I can safely say there probably isn't one of us who hasn't been scared and freaked out at all of this IC business and what it entails, lol.

I have been on my meds for a little over a year now, and am happy to report my worst fears did not come true at all. It helped me to keep a positive attitude (granted, every now and then I did have my pity-party moments, lol), in the respect of never thinking the meds/diet wouldn't work. Just the other day my hubby was teasing me about what I was thinking Nov 2004 (when I was dx'd) - that I was doomed, etc etc etc. I actually laughed cause none of what I feared came to be. For as miserable as I felt in the beginning, I thought I would never feel good ever again. Not true!! I am feeling pretty great now a days, and IC doesn't slow me down one bit. Heck, I hardly ever think of it anymore. Most of my dietary changes have become second nature so I am sure that helps too, but for the most part, I just do what I want.

So, yep, keep a positive attitude that the meds/diet etc will work, no question. It was hard to do somedays, but my hubby wouldn't take my doubts for too long -- he'd make me say over and over until I was convincing sounding that I would be alright. LOL

So, keep your chin up!!!

Hugs!
Tracey

[emmiep]

Alexis, you have put in your post what I have feared writing down for a long time. I was just diagnosed with endometriosis and it was an IC flare that sent me to the hospital where I had an ultrasound that disgnosed my endo. The gyno on duty seemed to think that the symptoms I was having aside from the pain of endo could be IC and she had me wait for a laparoscopy. She told me to work on the IC and really try to distinguish my bladder pain from my endo pain. Well, she was right and while the endo really hurts sometimes, my biggest focus now is getting my IC under control. I too am scared about not being able to have children; I am also 27. I'm considering not having any lap. surgery at all! The last two months have felt like one big IC flare and I only recently got my appetite back and went back to work on a limited basis. Frankly, this bloody disease is driving me mad!!! My fiancee is doing his best to help care for me and listen to me, but I know he is starting to wonder if we'll have children when we get married. Right now I feel like that is impossible because we don't have sex anymore. This disease has made me think more in the past two months that maybe having children isn't such a good idea. I wonder everytime I flare how I would cope with kids crying or running around or needing me when all I feel is pain. I've considered adoption, but again, how will I care for children when I can't even care for myself? And I know, I understand the strain you're under. Our chances of having children are small and the time that we have to have them is limited. I cry daily about that. All I can say to you is to keep trying, get more doctor opinions, and listen to your body. The post above mine from Tracey is a perfect example of how good your life can be. It's people like her that help me get out of bed in the morning with purpose. I hope one day I can have the life that she does. For now, I take it slow. I cry when I need to, and I talk when I need to. I ask for comfort and I never ever give up the hope that one day will be my miracle day.

As for your gyno, I have this to say: I have an aunt who was crippled with endometriosis and had most of her uterus and one and a half of her ovaries removed. Her and my uncle adopted six children over the course of ten years and when she was in her late thirties, she got pregnant. And after that pregnancy, she got pregnant four more times. On half an ovary!!! Eleven children later, they have much to be thankful for. Just because a doctor says your chances are slim, doesn't mean you will never have children. There's always a chance. There has to be, because I'm clinging to the same hope that you are.

If nothing else, please know that there is someone else out there, your age, with the same pain and worries. I feel for you, girl. I really do.

[traceann]

Oh gosh emmiep, glad I can be of help :kissing: . I can tell you there were quite a few who inspired me at the beginning of all this, VM was the biggest inspiration to me. Reading her posts and her attitude is what helped me when I was first diagnosed and thought the absolute worst was going to happen to me. It's hard sometimes, you read so many horror stories here on the boards, it can scare you to death. My hubby kept pounding it my head that just because it happened to someone else didn't mean it was going to happen to me, and he did that a lot, lol. All I had to say was "yeah, but I read..." and he'd start the lecture... :biglaugh: So, don't worry until it actually happens became my motto.

I never ever believed that I would feel this way again, ever. I thought I was doomed to the misery that was slowly taking over every aspect of my life, one piece at a time. I mourned everything. My normal diet, gone. My sex life, gone. Feeling no pain, gone. It was so scary and upsetting and depressing all rolled into one. I was even having panic attacks - I had never had one before and I never hope to have them again, ugh. I was so angry I wanted to punch holes in my walls, but then I thought I probably break my hand and end up with more pain, :biglaugh: At one point my sweetie actually pulled the tough love bit on me (corny I know, but true!) Told me to pick myself up (I was on the floor in a puddle of tears) -that I was way stronger than that and that I was letting it beat me, and he knew me better than that. That was the exact moment my attitude changed. It was weird actually. But "calming" down, I felt better almost immediately. I was dwelling sooo much on the pain and misery, I was giving it more of a life of it's own, so to speak. And it's been an upward swing ever since. Oh, granted not anything near overnight, (I wish!), but steadily better and better. And I have NEVER (knock on wood :bonk: ) gone back to that intensity of symptoms... I honestly thought it wasn't IC but something much much worse, as something that hurt that bad just had to kill me! ;)

I am 36 - going on 37 next month, ugh. I really had wanted to have a kid by now, but just when things were going that way (we weren't married yet, but that was coming), I get hit with IC. Now I have that to work around. And then you read that it can go either way, as to how it affects your IC, etc etc and blah blah blah. Great. Why not, eh? And then there's all the meds you take for all this stuff... I thought there was no way I was ever going to have the chance, and hubby doesn't want to risk it - if I am not able to be with out the meds, then it's not worth it to him to try. Ugh. (sometimes they don't realize what we girls are willing to endure, lol) Then the battle with the colitis I have been dealing with since Jan mildly but horribly from May on. Poor guy, we've been married since June, and I am just now starting to feel better. But, as things have been looking up, we talked about trying in Spring. (we also wanted to be married at least a year). I also keep a girlfriend of mine in my mind - she's a serious diabetic (was on 2 shots a day, now has the pump), had endo troubles and still managed to have her wonderful son, even though it meant I believe doubling her shot protocol.

So, don't give up hope, ever. You never know!! ;) There were days I literally wanted to crawl to my car for when I had to go to work...between the bladder pain and the vulvar pain I was dealing with it was all I could do to walk upright. I still can't believe I managed all that....

But again, sorry to ramble, but I just really wanted to say, yep it's scary as hell, but keep the faith that it can and will get better. Maybe not overnight, or with the first treatment you try - but there are MANY treatments out there, so keep your chin up!! :)

Hugs,
Tracey :)

[charmedx3]

Hi Alexis,
Sorry you are going thru everything. I hope that you will be feeling better soon. Just remember you will always hear the horror stories But everyone is different. What 1 person may experience, you may not. This board has been great I have gotten alot of great info plus it is nice to know I am not the only one feeling the same way. :welcome:

[Babs RN]

Emmie and Alexis,
Just to let you know I had one ovary and tube removed due to stage 4 endo and was able to conceive about 6 months later. There is always hope--I was also just shy of 30.

Hugs,
Barb :grouphug:

[Briza]

Hi Alexis
The diagnosis process for IC can be very stressful. I'm sorry that you have had such a difficult time. Many of us have been through the same but have found appropriate treatments and most do find something that works. Are you taking only Elmiron? THere are other meds that you can take in addition to Elmiron that could be extremely helpful! Elavil and Pyridium are two that have helped me the most.

[dbdab]

Hi Alexis,
Just wanted to welcome you and say that you can vent as much as you need to. If nothing else, it helps to know that you are not alone in this fight against IC. I have had some improvement with Elmiron. My symptoms are more manageable now then they were 6 months ago. I have been on Elmiron for 8 months. My progress in getting better seems to have stalled, but I'm hopeful that when I come to a year on the Elmiron that my symptoms will start to improve again. Hang in there. I know it's so hard.

Deb

[emilyrose197377]

:welcome: to the Icn. I am sorry for what you all are going through. You are in my thoughts and prayers that you find something that can control your symptoms of Ic.

:grouphug:

[sandramac]

:welcome: Alexis just wanted to welcome u!I read your post by your partner and found what a lucky lady you are.My hubby is just as wonderfull! To have a supportivie spouce is very important.I also would suggest that you look at the patient handbook is alot of great info there to help.I am very gratefull to JILL and all the others who work so hard to keep the ICN,going.They truley are all ANGLES!I hope you find some relief soon!Best of health!Sandra :grouphug:

[DENISE31]

I Had Endo. And Had Surgery After Surgery For It Until I Only Had A 1/4 Of An Ovary Left The Doctors Told Me That I Could Not Get Pregant But I Now Have A 12 Year Old Son That God Blessed Me With. And One Mothers Day A Year And 1/2 Ago We Adopted Twin 2year Girls. So I Know There Is Hope. Just Hang In There.

My Ic Now Since I Have Been On Elmorin, Elavil, And Hydroxine It Has Got Alot Better. I Have To Watch What I Eat. I Don't Drink Nothing At All But Water And No Foods With Acids In Them At All. I Have Notice That With My Ic It Gets The Worse If I Ever Get Up Set. So I Try To Stay Calm And Stick To The Ic Diet But It Is Very Hard!!!!!

I Wish You The Best!