new and really really struggling mentally

[Deirdre]

Around thanksgiving, I htought I had a UTI. I haven't had one for over 10 years. I treated it with D- mannose and Cranberry and it went away. After sex, it came back 2 more times. Same treatment, same result. Then on jan 15, it came back to stay. I got a culture and it was negative. Since then I have had good and bad days. I started the IC diet immediately when the culture came back negative so I have been doing that for 3 weeks. i have not seen improvement. Only some days that aren't as bad. I went to a uro/pelvic health doc (Pelvic and Sexual Health Institiute in Philadelphia) on thursdday and I think I am in the right place but I am still really freaking out. She said I have a mild case of IC but to me it feels awful. She also said there was some labial atrophy so shse gave me estrogen cream for that. Plus possibly Likens sclerosis. I have to go back for a biopsy of my vulva (vulvoscopy). I am nursing my baby so major drugs are out for me plus I am a holistic /natural medicine kind of person. I started on the Prelief before every meal and I ordered Cystoprotek which the doc recommended. I was really pleasantly surprised because in my expereince drs are really negative about natural treatments.
Before this, I was a happy, busy mom (I have 3 kids) and freelance actor, choreographer, singer. I love to exercise and eat really really well. I have a great marriage and we had a wonderful fulfilling sex life.
Since then, things are going terrible. I feel like my life has no pleasure and I am so afraid for the future. How am I going to do this?
The past 2 days have been bad so it is so hard to be optimistic. I've been reading a lot and my brain is racing.
What if I have that enteroccos bacteria and they can't find it? Will I ever have sex again? Am I going to ruin my kids because I am so depressed about this? Can I ever go hiking or camping?

I wish I had asked the dr- do you think I will feel better?

I know so many of you have much worse symptoms so I feel bad complaining but I just feel like my life is over. Now it is about getting through.

[bob04951]

Don't get depressed over this. Stick with the IC and alkaline friendly diets and see if it helps.

No, your life is not over. There is a young lady on here who is hiking the Appalachian Trail this spring, and she is determined to do it. Some docs are very open to giving natural remedies a try, it may take time to kick in, as with all meds. If that's the way you want to go, try seeing a naturopath who knows what IC is, even if it's just for a consult, and let your doc know what if anything you are going to try. Some herbal stuff is contraindicated with some prescription meds. Just be careful.

Try to stay as active as you can, and know that sounds stupid, some days it just hurts too much to move around at all. There have been others on here who pushed the exercise and saw imporvement (could have been the PFD getting better). Everyone is different, you know your limits and your body. Just please don't curl up in a ball and give up. And if you feel that way, you need to discuss it with your doc, and don't wait to do so. Good luck to you, let everyone know. Jill, wife of Bob

[sailawaygrl]

Deirdre,

I know how devastating it is to get a diagnosis like IC. It does cause you to ask a lot of questions about your future. How can you not feel grief and some depression. It is a life changing diagnosis, but many, many people get their condition under control and go on to lead the lives they have always had. With some changes in diet and some medication hopefully you will be right back to where you were.
First thing, NO CRANBERRY in any form! It is really bad for us. Second,have you found the diet in your research? If so, give it a good try and see how it helps you. You can find it on the home page of the IC Network (not the forum). As for the lichen sclerosis, I am really not sure what to tell you on that one. My Mom has it and I know it can be hard to deal with. Wait and see what the diagnosis is on that and hopefully someone that has that will see your post and give some tips. Or you might do a search for a forum on that particular problem. Sometimes with vulvadynia it helps to put an ice pack, wrapped in a cloth, between your legs to ease the pain. I assume you suffer from itching? The ice might help, give it a try.
It is ok to cry, and be scared. When something in your life changes this drastically it is crazy to think that we won't be upset. If you find that after a time you aren't able to get past the depression by all means do ask your Dr for some advice, many of us see psychologist about our life changes.
Try to take a step back from all the reading and take a deep breath and remember that no matter what, you have three wonderful children, and obviously a great husband. Nothing with that has changed. If he got a diagnosis of something unexpected you would be right there for him and find any way to help him, right? Let him do that for you. Educate him, and let him help you through this. Together you can do anything. We will always be here to help you too.

Please personal message me if I can be of any help to you. Try not to get too wrapped up in what if's until all the diagnosis have been made, then you can make a plan to get your health back on track!

Wishing you the best,
Sandra

[KatieB]

Deidre

I'm SO sorry you're suffering so badly. I can understand the feeling of devastation. I remember wondering " If I have this incurable disease, then is that "who" I am? Just a disease. I know that when I was diagnosed after a hydro/cysto my (horrible) uro gave me the "normal" drugs Elmiron and Elavil. I had really bad reactions to both of them. So they were not an option for me. I remember sitting in that awful uros office crying my eyes out due to the pain and the loss of "my life". I asked him, If I can't take those drugs (which were the only options he'd given me) then WHAT was I supposed to do. His answer was "Go home and just suffer". I'll never in my life forget that. And I did go home. And I cried and cried until I couldn't cry anymore. And then I got on here and I started reading the posts in the I'm in remission section. Sure, at first I thought that will never happen for me. But there are SO many people who are actually LIVING with this. It is possible. And you're very lucky to have a doctor who's open to more natural treatments. Of COURSE you're worried about your family. I am too and I don't have little ones so I can only imagine the fear and pressure you're feeling. Try to find a holistic type doctor who is willing to work with your uro and gyno because with what you're dealing with, you NEED a team!!! And remember whatever you're feeling I can almost assure you that the majority of people here have felt it or are feeling it now!!!
Read as much as you can and remember that the reason you may not see so many posts about how GREAT life with Pelvic pain issues is, is because those people have gathered their "team" and they don't have time anymore to post on this board. They are out there living their lives and doing all the things they were sure they would never be able to do again when they first heard about Their diagnosis I believe that one day I will be one of them just like I believe one day YOU will be one of them. And whatever you're feeling, even though it feels awful, it's ok, because it's normal to be sad when something devastating happens. If you weren't having those feelings I would worry even more about you. Just arm yourself with knowledge because that's your power. And know that we are here for you when you need us.

[ICNDonna]

I'm glad you found the IC Network. Even if it turns out that you do have interstitial cystitis, there is hope. Most ICers do find treatment options and diet changes that work for us --- and most of us feel good most of the time.

My IC was diagnosed in 1975 and I have remained active --- I have gone on vacations, done a lot of walking, worked full time.

Sending warm healing thoughts,
Donna

[Deirdre]

Thansk you all so much for your kind words. I just got the Cystoprotek inthe mail so I feel like I have SOMETHING to start with. I think I am going through some sort of mourning process right now. When this started I was freaking out about possibly needing a antibiotic (I thought I had a UTI of course) now I'm like- ????? I am actively trying to find ways to cope right now. my actual level of discomfort is not that high- relatively speaking. I just feel like I have to pee all.the.time and the bad days are pretty nasty with the burning. So I am trying to come to some kind of acceptance and new way of thinking right now because life doesn't slow down. Especially with 3 kids. Thanks again- your posts made me cry because of your kindness.

[jreed07]

Deirdre,
I too have recently been diagnosed with this complex monster of a condition. I am so glad you found the ic network. It has truly been a life saver and a blessing. It helps me know i am not alone nor crazy!
I want to share a wonderful book written from a natural point of view...Its called Along the Healing Path by Catherine ******. Also a website ...www.evenbetternow.com. Look on the left side under Categories and click Interstitial Bladder Health.
I have had no help with two urs in my area. Horrible reaction to Elmiron and other meds do nothing for the pain, burning. They refuse to give me any pain meds that are narcotic. Docs just want to go right into invasive surgeries. I am losing my med insurance next month, so my options are limited which might just be a blessing in disguise. Try drinking Marshmallow Root tea for soothing of the bladder. That is the only liquid i can drink besides water. Stay on the IC diet even tho its limited. I have been on the diet months and still no relief. They say to reduce stress........i lost my job a year ago, lost my house (waiting for eviction notice any day), lost my medical insurance and then i got "this thing". I haven been out of my pjs in months. Cant really go out, riding in a car is horrible. I have a partner who is extremely understanding and kind and loving. Not ever having sex again?????? That sure can interrupt a relationship.
So the things you are going thru and thinking about and feeling....have all been experienced by the wonderful persons i have met on the ic network. You are not crazy, this is REAL. There is HOPE. Take one day at a time. Educate yourself and listen to your body and what it is saying to you. Sometimes docs think they know everything but only you know deep down when something is right or wrong. Everyones IC journey will be different but know that I understand and care and will keep you in my thoughts with prayer. j

[Linda May]

Every icer is different stick with the IC diet no cheating, or you may get a flare.

You and your uro will eventually find the right treatment plan it just takes time.

I wish you the best and hope you find something that works good for you real soon.

[Deirdre]

jreed- I am so sorry you are going through all these things at once! Thanks for your kind words

Linda- I have definitely been sticking with the diet. I have no problem following it- I just hope it helps!!!!!!!!Thank you!

[flowerangela]

i am also going through the grieving process/mentally struggling with this recent diagnosis. just wanting to say hi and you can pm me anytime you need to talk

[425runner]

I'm also depressed over this and nothing seems to be helping. I've been drinking lots of marshmallow root tea, taking MSM, sticking to the diet but I'm hurting so bad!! Why me??

The pain is so bad only Vicodin helps, but I'm an accountant - it's tax season and I can't take it anymore. My life has been ruined by this awfull disease.

[Deirdre]

((((((((hugs))))))))) to flowerangela and runner. I hope we all get some relief soon. it's ok to say "why me?" sometimes. I've actually had some better days and mentally I am doing better. My brother is a Buddhist and he said, "observe the feelings, don't judge them, let them go" For me that is helping, BUT I am not in severe pain like you guys seem to be so it is easier for me to do that.
I'm thinking of you and sending healing and calm thoughts to you. (((Hug))

[flowerangela]

thanks deidre thinking of you as well.

[flowerangela]

runner are you male or female?how were you diagnosed? is pain your main symptom. i know how you feel about it ruining your life.its def an adjustment.

[jreed07]

i am so sorry for your pain dear one. I too, at times, say why me? But that question will never get answered. So much in the world is not fair. Give yourself 5 minutes of "why me" and move on. Be extra kind to yourself, reminding yourself all the time this is NOT your fault. Stuff happens. When i get really down, i go to this IC network and read a lot. It helps me to know I am not alone. I dont know if youve read all my posts but i am 53 and lost my job, income, house and medical insurance. Just when i thought all was taken, I got IC!!!!!!! I truly now know the meaning..... Your Health Is Everything!
I am on the IC diet, drink Marshmallow root tea and started the Cysta Q. I see no changes yet. It seems most people dont see results for months. I understand where you are coming from and shall be in my prayers. j