hi

[melissa989]

my name is melissa i am 20 yrs old turning 21 in october. on the 9th september 08 i had sharp pains in my right side, we thought it was my appendix and i suffered for two weeks because the docs didnt think it was too serious. i had my periods and for the first time none of the pain killers worked and niether did the heat bags and the pain was getting worse, and i was taking panadiene forte at the time. i went to c my gp who sent me to the hospital with a morphine shot. i had an ultrasound which showed nothing and a surgeon told me it sounded like endometriosis. he sent me to a gyno and i had a laparoscopy in november confirming that i had it. in december i still had pain and was put on provera to clear up any residual endometriosis. in march this year (09) the pain was getting worse and i had a bladder infection.my gyno sent me for another laparoscopy and to his surprise found more endometriosis and he did a cystoscopy and sent me to another specialist who did a test and i was diagnosed with ic and irritable bowel syndrome. that was in april just before easter, since then i have tried vesicare which only halved the urgency, endep, norflex and allegron which are all good for pain but did nothing for me. i went to see my doctor on monday 25th may and she said she thinks it is either constipation or more endometriosis and dosent think there is much more she can do. she is happy for me to continue with the continence nurse who is helping me train my bladder and thinks im doing a great job. i now have to go and see the gyno again. the whole time this has been happening i have not been working, even housework gets to hard some days. the first thing i did when i got back from the doctors i sat my boyfriend of 4 yrs down and told him everything i had just learnt including that if i ever fall pregnant i have to have a caesarian because a natural birth would be too hard for me, this upset me most because ive always wanted a natural birth. when i finished explaining everything to him i told him that if he decided that this is too much for him or that he didnt want to live like this that it was ok with me as long as he spoke up now instead of three months after. he didnt say nything to me which is how he is, but later that nite i got a text from him saying: u gotta remember, i loved u then i love u still no matter what i always will. at the moment i dont feel that ill ever get anywhere because these doctors keep playing pass the parcel with me. i just needed to get this off my chest to people that have an idea of what im going through because the more i talk to my mother the guiltier she feels and i dont want her to feel guilty about this, she told me when i was born she appologized because one day i would have to give birth and go through the monthlys, she had no idea that i would end up like this and she is the last person that id blame. i love everyone that has supported me so far even my dad that doesnt understand that this is something that cant be fixed and he has no one he can blame. he dosnt cope well and hates hearing me talk about what im going through even if its the latest news about treatment.

id just like to know if there is any one here who is in the same situation as in been diagnosed before they had kids or has the other diseases i could really do with someone to talk to

[aleet7]

Hi and welcome Melissa!
I'm really sorry that you are going through this even at your young age! Most of us were sent from doc to doc trying to get answers for our pain. I remember driving to other cities to see other docs to get a diagnosis and came away empty handed. I cried on my husband so much and I could see the sadness in his eyes because I remember spending an entire year in bed in a flare!
My IC was not diagnosed before I started having kids so I'm sorry that I can't help you with that. I know that there are others here that got their diagnosis of IC before having children and some that are college students going through this. I know they will bring some light to this for you. You are very blessed that your boyfriend is so understanding.

Have you started the IC diet yet? This could help with getting some of the pain under control(by avoiding high acid foods and drinks).

I hope this board will be a place for you to learn, rant and get to know others that can relate to you.
Best Wishes,
Aleet7

[Mrs. Peel]

Welcome, Melissa. I'm sorry you have IC and IBS, but I'm glad you found the ICN. I've had IC and IBS since I was small, but they didn't cause any real trouble until recently. My IC flares feel like kidney stones.

So many people here have parents, friends, and relatives who just don't get it. We're with you on that.

There's a section in the forum for pregnancy. Have you been there, yet? There is also a section on IBS. If you don't already know about soluble fiber, it's something you need to look into.

I get the impression that you're already eating home-cooked, natural foods, which should make the IC diet easier to learn. IC symptoms tend to be very food-related. And to dilute your urine and make it less irritating, drink as much water as you can.

I'm getting over a flare yesterday, so I may be a bit loopy, here.

Hang in there. Feel free to vent. Your boyfriend sounds amazing! I think you've got some back-up there, too.

[SharonA]

Melissa...:welcome: to the IC Network :):):)

Please try to calm down and not get too far ahead of yourself. There is every reason to believe that you will be able to have the life you want...babies and all. Having IC does not mean that everything is over. It is not. There is life with IC. There are many people here who can attest to that...me including. I thought my life was over and I would never be able to do the things I wanted and planned to do. Oh boy...Was I wrong!!! It might take time, but it can be the same for you.

No...I did not get pregnant after being diagnosed with IC. I am well passed that time in my life, but you can read a lot of posts from Members who did, are now and hope to be in the future. One of our Members, Lesa F wrote a pregnancy journal about her experiences while pregnant. You can find it here: http://www.ic-network.com/pregnancyjournal/

Your boyfriend sounds wonderful. My husband basically told me the same thing when I was first diagnosed. There are really good men out there who will love us...warts and all. :)

Sending you (((hugs)))...

[Briza]

:hi:
The others have already posted excellent advice so I will just say welcome to the board! Please know that you have come to the right place for support and first hand experience. I hope you find what works for you: combo of meds, treatment plans, diet, self help stuff! Please hang in there and continue to research and read posts both old and new here and you should find that the majority of us do get much better and live very normal active lives, and many here also do have natural child birth and pregnancy experiences to share. Hang in there...it can be a road trip, but I can speak for the majority that things can and do get much better...and finding the right dr often DOES include some passing the buck, as you have experienced....many of us have been thru that, too, til we found the dr/patient relationship that works best for us. Take care!

[momuv4]

I was diagnosed when I was 17. I am now 39 and have 4 children. I did have a vaginal birth with the first, csection with my twins and csection with my last. Dont let this consume your life. It is easy to do especially at the beginning. There is so much information out there to read and it can really be overwhelming. Try to see if there is a local support group in your area. I love our group. We meet once a month and quite often meet for dinner and lunch. It is great to be able to talk face to face with other people and share your stories. Welcome to the group . Stay informed. There is a wealth of information here with the Interstitial Cystitis Network. We are so lucky to have this. Please take care!!
Lisa:)

[melissa989]

thanku all for your advice it means a lot to me. the main issue i have with pregnancy at the moment is that my urologist has just told me she thinks the pain i have is more to do with endometriosis because it gets worse with my cycle. my gynocologist told me last time i had a laparoscopy that he had got it all and to stop taking provera. if the urologist is right than it has been months without treatment and im not sure how fast the endo spreads. if im too badly scarred than infertility is a possibility. im going to see my gp on the 18th to get a new gynocologist

[ICNDonna]

Even if you don't have endo, many ICers do have worse symptoms with hormone variations. I had a hysterectomy before my IC so haven't had the hormone highs and lows. And many with IC do have normal births so don't give up on that.

If you haven't tried the IC diet, I encourage you to start today. That single step can effect symptoms more than anything else.

Sending welcoming hugs,
Donna