Marriage on the brink - painful sensitive issue...*crying*

[earthwriter]

Am on the verge of tears here and this message is very much overdue, but I'm finally finding the courage to post now.

So, here goes. I've been crying a lot today, yesterday and a lot lately...I'm feeling emotionally overwhelmed and very scared of being alone and my estranged marriage falling apart and disintegrating. It's taken me a bit of time tonight to write this partly due to crying a lot. It's difficult to type and cry at the same time and I thought it was only difficult to talk and cry at the same time. I don't know where to start so I may have to write this in parts. I was diagnosed with this IC condition this year, but it took me a long time for me to get this diagnosis. I've suffered from this condition for a few years and I was suffering from it for more than a year before I even acknowledged it as a health problem condition that needed to be understood and treated.

Thinking I might have been suffering from a really bad uti or bladder infection, I went to a family medical clinic to talk with the nurse there to get my urine tested. I had this done twice and both tests came back with the same result - no infection was present. After talking with the nurse and reading a lot of online information I painfully understood my situation. This condition has nearly destroyed my marriage, my relationship with my dear husband. We were very much in love & happy once many years ago and we really enjoyed each other's company. We even had lovely wonderful intimacy & a fairly good sex life. We've been married for nearly 14 years. Our relationship hasn't been entirely wonderful or bad...we've had many ups and downs and we've been to "you know where" and back together.

I know that issues of sex & intimacy are for another forum. But I'm only mentioning it here because the real issue is the whole core of our marriage, not just the intimacy part, even though that's a severe painful part. We don't each other though at times we do feel like we do when we endure painful arguments that cause hurt in each other. Between not dealing with this condition properly with honesty & not being able to share loving affection & intimacy with each other for a year or more (no, I'm not exaggerating *crying*), it's amazing we're still together. It's been a combination of the horrible physical pain when attempting to have intercourse, the aggravating painful flare-ups that cause a horrible residue odor, and the daily stresses of financial struggle and living in a very tight space (a 27-foot RV) on top of each other 24/7 in a toxic environment that's put our marriage practically on the brink of end.

Last night, as we were saying our prayers and "good nights", I made the mistake of getting up to make my "final" trip to the bathroom to insure I'd be comfortable enough to go to sleep with hopefully no interrupted sleep. I did this instead of taking a quick moment to say, "good night," and lean over and kiss him on the cheek. Whenever I get up to go to the bathroom after our "good night wishes", I'm always hoping that his attention is on his radio walkman he listens to that helps him go to sleep so that he won't get upset with me as I make my final trip to the bathroom. But I know he knows...it's no secret...for a while...many months ago before we understood my condition, I'd take my trip to the bathroom and he wouldn't make much of a deal about it.

We're both really fed up with this condition and he really wants me to explore metaphysical spiritual approaches to healing this condition that work on getting to the core of my being my soul, in addition to any holistic approaches I'm working with. At the moment, I take fresh aloe, I try to take it, but between my emotional ups and downs mood swings and having a difficult time coping with daily life, I either forget to take it or I just feel so bad about myself and I feel bad about my life in general that I just "don't care" and not wish to deal with it.

My self-esteem has suffered, our sex life has pretty much taken a "back seat" and I"m really not sure where we're going from here. My husband and I do not have children. I"m not frigid and I'm not anti-sex or pleasure, I don't feel comfortable elaborating right now...I think I should stop writing now before I say something stupid...

I do care about my husband and I love him in many ways...I just still don't feel in love with him and I'm feeling very unhappy and alone and lonely...especially because we don't have any friends here and unhealthy people surround us. I'm sorry, I'll stop now, I'm babbling and crying and am about to stop making sense in my words. I wrote an additional few paragraphs about a stupid big mistake decision I made about a relationship outside my marriage and I'd like to know if it's ok for me to include that as well. I know I'm not posting to a judge jury and executioner *laughs* but still I want to be sure before I mention it. Okay, I don't think I included anything here about the mistake I made, but if I did and it's confusing, sorry. oops

Thank you for listening and for being there...
Earthwriter

[Cali girl]

First of all I would like to say hi! :) And welcome to the ICN. :welcome: There is so much information available here. And everyone is so nice.
I am so sorry you are having such a hard time. :grouphug:
I might have missed this but were you diagnosed by a urologist? I know you spoke of talking with a nurse and doing some research but this diagnosis should really be made by a doctor. And there are so many treatments out there that may help. I know you talked about going the holistic approach. Unfortunately I don't know much about that. Have you tried the diet? That can be very helpful in dealing with IC. You can find out what foods to stay away from. I know for me caffeine is a big no no. Have you thought of trying counseling for your marriage? It can help talking to a counselor about IC too. IC is not the end of the world. Trust me there is life with IC. I have had IC now for 2 1/2 years. And I admit I was scared in the beginning. But then I found a treatment for me that works. Now I do okay. I do hope that you find some relief soon. :grouphug: :kissing:

[angelaharrell]

Dear Earthwriter,

I understand what torment you are experiencing. IC is not an easy disease to deal with mentally or physically. It consumes your well-being and makes you feel very alone.

I would like to share my story with you, in hopes that it will help in someway.

I've been married twice. The first marriage I was 19 and so was he. We thought we were in love but actually we were just young and naive. We didn't take life too seriously, I worked in a retail store and he floundered from job to job. Neither of us had insurance. Which was fine until I got sick. I had the onset of IC but wouldn't learn that for another 10 years. I went from Doctor to Doctor & when I ran out of money, I went to the emergency room where I could set up payments. The financial burden began to build. I really began to resent my husband, because of him I couldn't get proper medical treatment & relief from chronic pain. While I was at home hurting, he was off scuba diving with buddies, or hunting & fishing. Needless to say, the fights were many, hugs & kisses were too few and he left me. He never tried to understand what was wrong, but I also pushed him away alot.

Eventually I remarried & my husband is a remarkable man. He has taken really good care of me & I am so thankful everyday for him. Because of him, I was able to get good Doctors, get the proper medication, & have a life that was as close to normal as any ICer can have.

I believe the difference is this; My present husband goes to the Doctor with me on occassion. He asks questions & plays a big part in my constant quest for relief. He hugs me alot, and holds me when I need it. He takes over & cooks dinner & does all of the household chores when I am having a debilatating flare and has never once complained. I am constantly thanking him for being such a wonderful care giver, and he simply says, "one day you'll have to take care of me, it's just my turn right now". That's what marriage is. It's taking me sometime to realize that fact. I was so use to being alone, sick, & humilated by this disease, that I spent the first part of my marriage waiting for him to run like my first husband.

Here's the difference as I see it. Sex and intimacy plays a huge part in a marriage, especially for a man. That's how they connect to us women. In my first marriage, I resented him because I couldn't get well. He seemed aloof at my pain & I was embarrassed that I was sick. While I loved him deep down, all of the feelings on the surface were resentment, hatered, & loneliness. My present husband asks daily how I feel & did I take my medication, & did I take it easy today, & did I stay away from the wrong foods. I say this laughingly, but it's like living with my Mom. But because my husband is so caring & understanding, I find that I feel more intimate with him & reflect that back to him in a physical way. I want him & desire him because I know he feels that way about me. I have a post somewhere else on this board, if you'll click on my user name, you can read my previous posts and I have a good one on painless sex & intimacy. I think it might help.

My advice to you is to seek counseling for yourself as well as your marriage. While counseling can be expensive, so can a divorce! Usually churches have counselors or mediators at little or no cost. I would call around to a few & get some info. Make your husband go to some Doctor appointments with you & give him some literature on IC. At least that way you won't feel so alone in this & he can gain an understanding of what you are going through. It might make you two connect on a whole new level.

While I don't completely understand the holistic approach, I don't think aloe is going to be all you need. IC is a process of trying drugs, treatments, diet, & a combination of all the above listed. Stress plays a huge part of IC. Go for walks, alone & with your husband. Take some special time for yourself everyday because you are fighting a huge battle and you really need time to regroup.

Earthwriter, I wish you the best of luck, I will keep you and your husband in my prayers.

[ICNDonna]

I think it would be a good idea for you to see a counselor. They can really help --- it would be best if your husband would go too, but if he won't, I suggest you go alone. A life with IC is not an easy one and sometimes we just need some help in dealing with it.

Sending gentle hugs,
Donna

[tigger_gal]

I agree with Donna, and maybe get on an anti depressant.. living in a house and when my hubby is home 24/7 sick or vacations, we drive each other insane, I couldn't imagine bieing in a trailer with him god frobid we might kill each other...
Besides having IC and that alone will put you on a mental rollercoater, I am wondering if you are just not happy with how things are going in your life now.. which is ok cuz, I am going thru a hard time now, and so are alot of us, that is not IC related.. Go and seek some help and please keep posting, it really helps to talk to those who understand..

[Babs RN]

I am trying to figure out how to say this to afford you the most help in your situation. My husband and thid disease are like mixing ammonia and bleach--HAZMAT toxic. I have tried many times to get him to appts with me so that he can understand the treatment plan better. Maybe you could get him to go to an appt with you. The financial issues stink too because they add fuel to the fire. We were both working full time(in the Army)and I am a nurse. Let me tell ya once that second income went away we spent two awful weeks of money arguments. As far as intimacy, hubby has been deployed since January(except for his 14 day leave--we went to Disneyland for my daughter's 5th b-day--and slept in the same room as the rest of his clan, so no action there. Harasses me about pain meds, and how bad the pain really is...yadayadayada...so a little background--to illustrate that I know where you are coming from, girlfriend!!!!!I know this is very personal and hard to discuss on a message board. If you want you can look at some of my marital issue posts, please do. I can't fix this for you...I can be a listening ear though. Our issues are diminishing and we are staying together. We have pledged that the little things are not worth arguing about my hubby takes a 10 second left off stream period, because if he did full force he can be down right rotten. Sorry for being so long winded, this situation is currently very close to my heart and soul. Please PM me if you would like. I have big shoulders, lots of cyber Kleenex, and little bit of insight.

Hugs,
Barb :grouphug:

PS--Counseling is a great thing, really. I have gone for almost a year just to let my feelings out to an objective 3rd party that also can provide tricks for coping as well. So even if he wont go, please go for yourself

[Dixiefireball]

I will say a prayer for you and your family. I agree with Donna you should seek out a counselor to help you both deal with these issue.
My heart goes out to you.
Rhonda

[VickiB]

I must be missing something, -he gets upset because you make a 'final trip' to the bathroom? Wow!

Any partnership is hard, and throwing IC into the mix can be a double whammy. Please remember that IC is not your fault, and you are not responsible for anyone else's inability to deal with the limitations this disorder often brings with it! Heck, if I make just one final trip, I consider that a good day! I do agree with the others and feel counseling may be helpful. If hubby won't be a part of it, go for your own well-being!

Most of all, I want to send a bunch of cyber-hugs your way! I wish you peace!

Vicki

[ICLori]

Sending hugs your way. I hope things work out for the best for you.

Blessings, Lori

[CareBear]

Dearest Earthwriter,

Please know that here you are loved! This disease is hard and painful, but we all help each other get through it. Please remember that IC is a PHYSICAL DISEASE--you don't imagine the pain, you can't just relax and make it go away. I tried wacky diets and supplements and all that stuff for years----I was still in horrible pain. God gave us doctors and God gave us medicines for a reason, to help us. Please use them--they work!! It may take some experimenting to find what meds work for you, but the pain relief and ability to live like a "normal" person is so worth it. YOU are worth it! There were several years where my husband and I had a sex life that was almost non-existent. The pain was too much for me. We became a little creative and worked things out so that he is happy, I'm happy and there's no pain.

Please don't give up! Get educated. Find a good doctor. See a counselor. Keeping forging ahead. There's always HOPE.

Love,

Cari

[traceann]

You have received EXCELLENT advice and most importantly, do post what you would like to talk about, and as often as you wish. It can help so much, to get it out, in one form or another. I too was wondering if you were "officially" diagnosed by a doctor? I understand the holistic approach as well, but sometimes mainstream health care can be a valid compliment, as most drugs now a days are derivitives of plants, or synthetic versions of them. There are many many treatments to be tried that can go a long way to improving your situation!!

I also agree counseling could be a huge benefit!! Like Donna said, if he's unwilling to go, go by yourself. I did that in my first marriage after the ex decided one trip to the marriage counselor was enough, I continued and it helped ME so very much. Your sweetie needs to understand it's not your fault, and what would HE do if it were him that had this problem?? Would he like it if you got annoyed he had to make one more trip to the potty, or had to give up sex temporarily ( I say temporarily because most of us eventually find our way quite nicely in that area after a bit of time, experimentation and a good quality personal lubricant! It just takes patience...) not because you wanted to, brain still said "yes" but body says "NO WAY!!" ????

Ah yes, and living in close quarters can be troublesome even if one is not dealing with a health issue, that's for sure!!! My ex and I used to go camping for 2-3 weeks in a 24 ft travel trailer, and let me tell you, by week 2 I was ready to come home to more room!!! ;)

I do encourage you to seek a doctor if you haven't, see what treatment options are out there, as there are many!! It can be tough for any of us when diagnosed, my sweetie and I had many a tense moment in the beginning while trying to navigate the new way of life, as we both are affected by IC, me physically and him in lifestyle, etc. And I do recommend, trying to experiment in the intimacy department, that alone can breathe life back in. There are many ways as stated above to accomplish that without causing pain to yourself. Many activities that don't involve penetration, that's for sure that can reassure your sweetie that you still love them, desire them etc. That it's not your mind saying no, it's your body. It helps you too, helps bring back the feelings that drew you together to begin with. It's not really about sex, but intimacy and quality time spent in that regard.

Oooops, I too seem to have gotten a bit out of typing-control here! I hope this can help, and remember we are all here for you!!!!

Hugs! :)