Concerned Husband needing advice

[maselby21]

Hello All,
This is my first posting on this forum, but I have frequently visited this site in the past month or so. I turn to you for your advice. I have read everyone's suggestions on what can be done to help the pain before, during, and after sex, but can you give some advice of starting the ball rolling? Actually, just any advice would be greatly appreciated! I have been in a relationship with my wife for over 6 years. Although my wife having previous partners, I was celibate until marriage. The beginning of the marriage was a little dishearting, due to a flare up during our complete honeymoon. Now her symptoms are getting worse, and I don't know what to do to help or anything. I am not necessarily frustrated because it isn't her fault at ALL, Lord knows that I couldn't handle it, but I can count on one hand the number of "relations" we have had in our marriage. I know that it kills her too, and she thinks that I am going to leave her, not in a million years. I try to tell her that I waited for her, but sometimes she still doesn't believe me. What I am hoping to gain out of this is some insight on what I can do to help things not only in the romance department but everyday living too!!! I would like to thank everyone for their precious time and suggestions.

[Claredale]

This is one of the sweetest postings. I have been dealing with IC for almost 20 years, and my husband has been wonderful throughout this entire ordeal. It's has to be really rough on newlyweds. I am sure you will get some insight on that. My husband is very patient and most of the time we have no problems getting things started, it the aftermath that I deal with, which I have meds that I take. Has she talked to her doctor about this?

Tracey

[ICNDonna]

The best thing you can do is to let her know that closeness and intimacy doesn't necessarily mean intercourse. She needs lots of just being close to you --- it may not be easy for you at first, but once she feels more confident in her relationship, you may find responds.

Donna

[sickofmybladder]

What a wonderful husband you are to come here and seek advice -:welcome:

I am very fortunate to have a supportive husband as well - and it is the biggest help of all

As for the insecurities - I have the same ones - will our marriage survive the obvious reduction in sex? Will he still love me? etc..... The only thing you can do is continue to reassure her - to remind her (as often as necessary) that love is not sex - that there are ALOT of other ways to express love and be together...

As for "getting things started" - is your wife on any medications that might be effecting things a bit? If not - it may be the anticipation of the pain she will be experiencing afterwards (I feel like I have to plan when it won't affect me to bad to be in pain for a day after - sad but true) - then just reassurance of "other things" you can do instead.

Good luck to you - hope to see you again.

[maselby21]

We have been to the doctor, actually 4 or 5 of them. She takes Uro-Blue?, hydrocortizone(on occasion), or vallium. She has done instills? before which seem to help, but right now her new doctor wants to try pain therapy without medication. Does that sound odd to anyone?

[sickofmybladder]

I want to make sure I understand correctly - by no medication - do you mean no pain medication or no medication for her I.C. - like the instillations?

If it's the latter and instillations were working - and now a new doctor wants to treat without - if it were me - I would see another new doctor.

Has she tried any of the other i.c. meds?

If she has pelvic floor dysfunction also - (which is very common in people with I.C.) the valium was probably helpful also. (One of the things on my list to discuss with my doctor at my next appt.)

[Claredale]

To me, depends on how bad the pain is. As I am sure you have read, we all so different when it comes to what works. Most of us have tried just about everything. I see that your wife is taking Uro-blue. I don't know what that is but I am assuming it is alot like Urelle or Proced DS. I started using Proced DS for my spasms and burning bladder symptoms in later August and it made a huge difference. I am down to 1 1/2 to 1 pain meds (Lortab) a day. I was taking one every 4 to 6 hours the majority of the time (for years). Since we are all so different, it's important to find a doctor that really understands IC and is a good listener. It took me a couple doctors to try until I found a wonderful one that came highly recommended.

[maselby21]

From what I understand zero medication. The previous doctor no longer treats patients, and our new was a recommendation from the previous doctor. Yes, I would love for her to find a new doctor, as for right now, this is the only one in the area. :( You are correct in saying that the instills were working and that hasn't been suggested by the new dr yet.

[lisabar36]

I suffered for 9 years with IC, until I took the meds and started bladder instills, I did not get ANY releif! I tried a strict diet, I tried being medication free cause they have side effects but that didn't work for me. The pain was taking over and I felt so hopeless, I finally went to the doctor 6 weeks ago in tears because I hadn't slept in days, I needed some relief and noone should have to ever feel like that. I hope your doctor helps you and does whats best for your wife as far as relief.

[leelee88]

Well, I know it is not uncommon for Drs to not wont to treat with narcotics, BUT there are other meds that could help her and if this Dr is not open to this, then please find her a new one!!

BTW I think you are a great husband to be posting your concerns for her. I have a really great a supportive husband myself.
Please let me suggest that you both keep the communication open and talk to her and always let her know even with this disease that she is your number one..
Hold her close and when she tries to pull away let her know you are there. You have to realize as a husband that your wife has a very painful disease.
And there will be times she will try to pull away and just feel hopeless and she will want to give up on everything..You will have to be the strong one when this time comes..But with your love and support and finding the right Dr. There is plenty of hope for the both of you..

As I tell everyone on here never give up and dont let her, keep the fight going there will come a day where she can get back to a normal life..And if you have doubts about this new Dr.. MOVE ON! even if it means finding a Dr in a new town....Good luck and thank God for good supporting husbands like you:angel:

[SharonA]

I want to say hello and Welcome to the ICN. What a great thing you are doing for your wife by coming here and learning everything you can about IC. Your support and understanding is the most important and immediate help you can give your wife. She needs you to be there with her and for her.

If you have read any of my posts on this subject, you know I am in absolute agreement with those who have said that intimacy does not need to have anything to do with intercourse. Intercourse is one method of sexual contact, but it is not the end all be all of intimacy.

Intimacy in a marriage/partnership is very important. I also happen to believe that it is important in the total care of an IC sufferer. We who have IC and are in relationships need our partners to comfort us physically and emotionally by holding us, caressing us, touching us tenderly and lovingly without the expectation that those touches are going to lead to anything other than what they are...physical signs that we are loved and cherished.

The number one tool of intimacy is communication. My best advice to you is to take the time to open up a conversation with your wife. Explain to her that you desire an intimacy with her that goes above just the physical. That you want to reach her heart first before you reach for her body. That you desire to help her relieve her fears and to give her a sense of peace and well-being. That you will be there for the long run and love her beyond her expectations of herself and what she sees as her limitations because of IC.

Then listen to her. Let her tell you what is in her heart. What her fears are because of having IC. What IC does to her emotions and to her thought processes. This is the beginning of true intimacy. A very important beginning.

[BrittanysDance]

Just wanted to add my welcome and say how nice it is that you posted! :)

I'd like to add that you dont mention your wifes age, if she's got any other medical conditions other than IC (i.e, has she had a hysterectomy, is she on hormone therapy, any over the counter meds, etc). Many things can be a factor in not "wanting to be in the mood." Number one thing - fear of pain - as the others have stated.

As SharonA said - being intimate is more than just having sex however, especially to women (at least for me it is). I love to be held, massaged, cuddled, talked to, bathtub set, candles, music, dinner, etc....WITHOUT it all leading up to sex or expecting it from my husband. That is a deal/mood killer for me first and foremost if I know he is expecting sex because he did something nice for me. 100% deal killer. Now dont get me wrong, I do give into temptation alot of the time, but....sometimes its got to be about ME and not about him - just pamper me and not make it about intercourse or anything other than just loving and caring about me. If things happen, then great! :smile tee I'm all for that!!:woohoo: But - romance isnt dead and it certainly doesnt die just because we get married - even after almost 20 years. Letters, flowers, love notes on the mirror all still make us women go weak in the knees (hint to you men out there reading this) and not just on our birthdays, valentines day, anniversaries either.

Set her a bath, wash her hair...spend some time on her and make some evenings just about her, no sex...nothing like that....talk to her - see how she's doing. Maybe thats part of the problem also, perhaps she's afraid to talk to you about how she's feeling or that she feels like "less of a woman/wife" because she's hurting so terribly bad. We get to feeling that way with IC or chronic pain and feel we've let our husbands down, alot of times feeling "less than a woman", like we've lost a part of ourselves. It's hard to explain unless you are a woman, but trust us, that feeling is so very real and right there at the surface.

With all that said ..you are a wonderful husband for coming here and posting...your wife should be very proud that you are involved and care so very much!

Biggest hugs to you!
Brittany

[maselby21]

She is 33 and no other major problems. We have been married over 4 years now.

[Bessie]

That is so sweet that you are here asking about your wife. That says alot about you.
My husband is a saint, never pressures me, takes care of me, and treats me like a queen.
It is the little things that I love. I love when he helps me in and out of the tub, when he brings my medication to me, when he helps me get dressed when I can't, when he goes to the store for us, when he fixes me something to eat or drink, when he just holds me when I cry, when he prays with me and for me, and when he is my greatest advocate. I would never wish this disease on anyone but God has taught me a beautiful lesson by having it. I know the meaning of "True Love" and that is one of the greatest gifts I have ever been given.

[roho]

Hello Maselby21,
I too am a newly wed IC husband. My wife Holly and I married last year in November. Shortly after our wedding (about 2 months) her IC flared up. And quite frankly that was her condition until about 1 month ago. Unfortunately, my wife Holly left me 2 weeks ago. Clearly our first year of marriage was very very tough. I'm not writing this to discourage you at all but simply to learn from some of my mistakes. Firstly, learn about IC, which you are clearly trying to do. Second, Communication is key and I can't reiterate enough what SharonA said. With all the stess of IC and watching my wife in pain, I know I just secluded myself in my work and my thoughts. This led to a distancing on her part as she felt more isolated.
Go to counselling if you feel that it will help you both discuss your feelings and the stressors in you life.
With regards to intimacy, I didn't pressure her because I felt that talking about it would just add more pressure on her. So I bottled up a lot of that. I also began to resent her for stupid things because I was (at least I felt at the time) the sole caregiver in the house. I worked, I cleaned, I shopped and cooked.
One thing I did find a lot of help in is the following article:
http://www.ic-network.com/iclifestyles/sept03.html
In my case it's too little too late, but you sound like you're on the right track.

Good Luck! I need not remind you that despite all of the difficulties this disease brings to couples, your spouse is worth every ounce of love, compassion and understanding that you can give her.

Rod

[BrittanysDance]

Rod,

First, welcome to the forums and second, I'm so sorry about your situation. I pray things will work out between the two of you - as you said, IC is a hard disease and is very stressful on one individual, let alone two.

Just wanted to say thank you for sharing your advice, coming first hand from someone who's been there yourself, with us all. It goes to show that IC affects us all, not just the person who has it.

Biggest hugs to you...and thank you again.

Brittany

[SharonA]

Rod...I am so sorry that your marriage took this route. I do pray that you both will be able to reconcile and come back together stronger and healthier in spirit and as a couple.

[roho]

Thank you both for your kind wishes. I think it may be too late. I think I was just "away" for so long. Escaping in my head everything that was going on. Holly really felt isolated. She is now out of a flare up which is great, but she also thinks it has a lot to do with her having left. She says she has escaped a toxic environment. I am currently going to therapy right now to help deal with some of those problems.
We'll see.
Again, thank you for your kind wishes. I know IC is very tough on a marriage and I think it is important that spouses get informed and discuss their feelings, frustrations and success stories in forums like this. We can all learn so much. I wish I had.
Rod

[karen10]

I also have a very supportive husband. However, because of his great support, I really want to give back to him and I've been looking into some answers for less painful sex. First, my doc (who specializes in IC) suggests valium suppositories to be inserted 30 mins prior to intercourse -- this helps with pelvic floor muscles not becoming so tense. She also suggests lots of IC friendly lube (can be found on this site). I have also read on this site that MSM gel has been useful for some after intercourse, so that's worth a try as well! Fortunately, I get periods of time with less pain, so we often wait for those times. Wish you well--this is the hardest part of having IC for me. I can deal with no chocolate or pizza (and I LOVE both), but losing that level of intimacy with my husband is very hard. We do have some creative ways of being intimate though! :smile tee

[maselby21]

Rod,
I am sorry to hear that about your marriage. One thing that I have learned in my life is that if two people are meant to be together, they somehow wade through the bs and mend any doubts. I am glad to see that there are other males out there willing to search and help other in need. I would like to thank everyone once again for all their suggestions and comments!!! :)

[cartervj]

Hi, might I say that you are very considerate and your wife is very fortunate to have you. I have constantly had problems with my husband because he doesnt understand my pain, nor has he tried. If I CANNOT have sex, he gets upset. He will calm down and act considerate only after he has relieved himself on his own. I have brought home literature for him to read, which goes unread and sometimes feel like I am forced to have sex with him just so he doesnt get angry with me. But, the alternative to painful sex is foreplay. Not just a few minutes of it either, but at least one-half hour of foreplay. You know what turns your wife on and what doesnt, just do what turns her on. First, she must take something for pain. Next, make her a nice hot bath (no bubbles, they might cause a flare), candles for relaxation and dim lights. Next, a nice body massage with oil or lotion, preferably a calming, soothing oil, like camomille or something like that. Lastly, begin foreplay. You need to take her mind off of the pain and get her into a relaxing state so that her bladder will relax. Notice I did not say to give her champagne or wine. The bladder needs to be empty, so NO drinks. If she needs to drink something, make it a nice hot cup of tea, preferably, something that wont cause a flare. Depending on your wife, you may need to know what type of tea she enjoys. Then, like I said, on with the foreplay. She will be so relaxed by then, she wont think of pain, which by now, the painkiller should have kicked in. I find that being relaxed and with good foreplay, the bladder is relaxed and actually things move out of the way. When a woman is ready for sex, her body gears up for it and it makes it easier. Next, dont go all nuts with it. My husband acts like it is his first time when we do it and it kills me, he just wont go slow. And depending upon where she first says ouch, that is about how far you may be able to go. But, if it works out, you may be able to go all the way. Good luck with it all. I hope it works for you. :)

[kuntrygurl78]

I think its very sweet that both guys are on here trying to bring a husband's perspective to all of this. We really appreciate it!

My husband and I work opposite shifts. We see each other when he comes home for lunch and for about an hour between when he comes home and when I leave. It makes it hard to have a love life.

At first it bothered me. Now I am more secure in my relationship. I realize that our intamacy is better. We steal kisses, we snuggle in the chair between our shifts, we talk on the phone all the time, send emails. All the little things add up to something more than just sex.

One of the sweetest things my hubby ever did for me one day: i was driving home from a doc apt. He called to see how it went. I told him it went horribly and I was in pain. When I got home the heating pad was warm, my blankie was ready, and he had a glass of water next to my chair. I know it sounds silly, but knowing that he understood what to do for me when I didnt feel good meant the world to me. (Makes me want to cry just thinking about it!)

Keep reassuring your wife. Tell her you love her. You are doing the right thing by being here!:welcome:

[irishnan3]

Rod
What a wonderful thing you did by giving encouragement to this new husband. We do learn from out mistakes. It is truly hard dealing with IC. I've been married for 29 years and I still worry that IC could destroy my marriage. I have been dx'ed with IC for 2 years now, but have suffered for a very long time not knowing what was wrong. He has been wonderful through it. But I know it takes a tole on him as well as many many other husbands out there. If you want her back, don't give up. She is dealing with very strong emotions and most likely feels to blame for what happened in your marriage. Stay strong and let her know that you are learning what you can to help support her with her IC. We all make mistakes but that is what this disease can do to you. It makes everyone suffer.

[cartervj]

You all sound as if you have great understanding husbands. Mine is not. I dont know what to do. I am in agony today. My husband is upset because he now has to do what I cant to prepare for our Thanksgiving feast with my family, which are all arriving tomorrow morning from out of town. I cant walk and can hardly move. I have no one here with me to help. All the children are in school. I have given my husband literature to help make him try to understand what I have (IC; Fibromyalgia; IBS), but he never read them. I think that anything you can do to help, is the greatest love of all.

In sickness & in health....we must always remember our vows.

[Claredale]

If he isn't going to help, you can do only what you can do. If that means you can't prepare Thanksgiving dinner like you have it pictured in your mind, then don't. Maybe when your family comes in, hopefully you will gain some willing workers. The one thing I am very grateful for is that I know my boys have watched my husband take care of me when I was at my worst, and they knew "most of the time" how to take up the slack as well, especially when I was in agony.

I wish I knew of a way to make a man listen. That doesn't mean my husband does everything for me all the time, but he does a great job to make me udnerstand that it's okay to let things go. He has been through this a long time with me. I asked him the other day if he could tell I was getting better since I feel better. He said I definitely was in a better mood, but I still have those mood swings from time to time, especially when I get stressed about family coming in, etc. I am making a point this year to not stress, not do more than I can do so I don't spend the rest of my weekend off paying the price.

My goal is to enjoy my family and to be happy.

Hugs!
Tracey

[cartervj]

Thanks Tracy. Thanksgiving was great and full of willing workers. I did not have to work tooo hard, but I was enjoying myself in the process. Hope you had a happy as well. :smile tee

[Jamey]

I only read your first post but I would suggest not having sex untill she's completely and totally relaxed. And remember that it's ok to stop and start again. It may take a long time at first but don't get discouraged. If she flinches it hurts whether she admits it or not. It's been 5 years for me and my fiancee and I'm just now at a point where I can completely trust him with my body. The more open and honest you two can be the better it will get. And it's still getting better and better for me. You can PM me and I'll give you a few suggestions if you want.

[HistoryKat]

I have a wonderful supportive husband and I know I'm lucky. Jeff knew he was walking into a weird situation with me from the beginning with the problems with my ex-husband and the medical problems that I already had from his attack on me. Our second date he had to take me to the emergency room because of the pain in my hip and leg. How's that for a romantic evening?! LOL .....

The men that come here looking for answers and help are so fantastic.

Somewhere in this thread someone suggested some lovely ways to be close without sex and here's another ..... I have very long hair, its very soothing for me for Jeff to brush it for me and he does enjoy doing it. If your wife has long hair you might try it.