Adult related topic: intimacy post tx

[KarenInWA]

Ok, so I'm 44 and have never had what I can even begin to call a "real" relationship, so I honestly have no idea what it is like to be in one. But OMG, what is up with your husband??? Why is it only all about him and his needs, and not even one bit about yours after having major surgery with not just one, but TWO organs from another person who DIED, no less??

Sorry for my outrage, but your husband is less of a man to me to put his needs over yours in this obvious, blatant way. Please start putting your needs before his. Your health requires it!

KarenInWA

[UkrainianTracksuit]

KareninWA, when one puts it in the big picture (which is obvious, but sometimes we forget) it is really stunning. There is a major surgery, 2 organs and someone who has died. I think about the magnitude of this situation and it is really jaw-dropping that one person can make it about himself/his needs.

I don't know how to explain all this to him (besides the obvious no) without it turning out of me being a bad wife (culturally, socially, religiously) and then the whole chorus of "don't get involved at all with sick people" starts. He is the one that gets the pity and the gold star for dealing with me and not of me having a major operation... if that makes sense.

[MooseMom]

U-Track, I am so sorry to hear that you are so helpless in this situation.  It seems like you have given your husband full and complete control over your own body, and that is such a shame.  I hope the two of you are at least enjoying your newly invigorated sex lives together.

We all make choices and have to live with the consequences.  You knew that problems would arise from having so much sex so soon after such a big surgery, and it is too bad that now you are the one having to pay the price.  I hope it has been worth it.

No, it doesn't make sense that he is the one getting the gold star, but it does look like that this is a mindset that you will just have to live with.  It's obviously not going to change.  None of the players in this little drama are going to change, unfortunately.  You seem to be well and truly stuck.

The real surprise is that you saw this coming from a mile away, yet you were not able to avoid it.

I am sorry that you are stuck in a culture and with a husband that values a wife so little.  I hope that sacrificing your body to be "a good wife" will have some value to you.

Good luck in your future with your husband and with your recovery.  I hope your medical team will keep your body going well enough so that your husband will be happy, since that seems to be the priority here.  The fact that you've had major surgery seems to be entirely irrelevant.

(It still might be worth talking to a gynecologist to see if there is anything you can do to protect yourself from the ravages of your husband's culturally aggressive sexual appetitie.  If you do someday decide to a consult, make sure she is female.  I am suspicious of all of the men who are in your tx team.  My post tx team is all female.)

Take care!  I hope things work out well for you!

[SooMK]

I don't think there is much written on this subject so I think this is a great thread. Evidently people with chronic diseases and old people are not supposed to have sex. And you're not supposed to talk about it if you do. I wonder if it would be helpful/possible for one of your doctors to talk to your husband. My guess is that it would be outside their comfort zone though. It's ironic that your health might require an even longer period of abstinence because he's not able to slow down now. Over the years in a marriage there may be times, such as immediately after childbirth, when it's not possible or advised to have sex as often, or in the same way, you may be used to. There are ways to have sex that don't have to put your health at risk. And as wild and crazy as it may seem, it's possible that at some point in your life together he may get sick and be unable to have sex or (if you can imagine) not feel like it. Karma has a way...

[UkrainianTracksuit]

(It still might be worth talking to a gynecologist to see if there is anything you can do to protect yourself from the ravages of your husband's culturally aggressive sexual appetitie.  If you do someday decide to a consult, make sure she is female.  I am suspicious of all of the men who are in your tx team.  My post tx team is all female.)

Yes, that remains the plan once I am home. We are still not home nor released from outpatient care. (It will be 2 mos. here soon.) Once I am home, the appointment is a priority and most definitely a woman will be consulted. It is not as if this has been forgotten or left undone.

I am NOT making excuses for my husband's pigheaded behavior but (yes, excuses begin with but) we have been in this condo for this extended period of time. Yes, we go out some days and are not hermits but I think this plays a role in his piggish behavior. Once we return home, he can return to work, his own friends, hobbies and working out and his sexual focus will subside.

That does not dismiss the fact he has acted completely disrespectful towards my operation. I know this. It is not as if I say, "come on, let's go! I don't care about protecting my two gifts and accept the pain I know this will bring!" No, actually, I am VERY MUCH concerned about damage that could be done. It makes me a nervous wreck. He just doesn't listen. But, this is only complaining if no solutions are sought. I'm not going to divorce him.

I really do think if a man whom he respects slapped him and said, what are you doing, boy?, it would be eye opening.

And as wild and crazy as it may seem, it's possible that at some point in your life together he may get sick and be unable to have sex or (if you can imagine) not feel like it. Karma has a way...

Yes, exactly. I cannot explain how relevant this quote is. I remind him that health can be rather fleeting. Here today, gone tomorrow. While he is blessed to be in excellent health and athletic, this may not be the case tomorrow. I have asked him to consider how he would feel if the tables were turned. If he was bedridden, in pain, and I complained that my needs weren't fulfilled or did not take his condition seriously. He would undoubtedly think I was a warped female dog. Uncaring, unsympathetic and selfish. Some times, some are unable to empathize because they can't place themselves in a situation.. a situation that can happen to anyone! Being sick is not unique and it happens to all of us at some point... minus the lucky few.

Another good point is that his need of urgency now can cause problems later on that demand continued abstinence. He should be focused on abstinence anyway since it is Great Lent.    But that is secondary to the bigger picture overall. Haste makes waste.

When I complained of my pain (and told the doctors why), they told us to stop doing it so much. (My husband attends all my appointments.) I was grateful for that order. That just led him to find "easier" ways.

[MooseMom]

Can't you just say "no"? 

[UkrainianTracksuit]

Saying "no" only works for so long. I do say no and he will broach the subject later and then again. He doesn't do things forcefully so I don't want that idea out there but he will initiate after many "no's". (kissing and stuff) Other times, he wears me down with asking that I say yes in a huff. Prior to this, he went over a month without because I was rather ill. He never asked. Complained a bit, but didn't ask.

[MooseMom]

In thar case, I do not think we can help you.  I am sure you will be just fine!

Good luck, and take care!

[UkrainianTracksuit]

I do not seek to argue with strangers but truly, there is no need for dismissive or chirpy remarks. On that note, paka for how many ever years again. Good luck to you too and everyone else as well.

[MooseMom]

With all due respect, fellow IHDers have spent quite a lot of time and effort in reading your posts, responding to them, agreeing with you, trying to support you and urging you to speak to your husband about your concerns.  We all understand the magnitude of your surgery and the toll that it takes in the first year post-tx (any maybe beyond).

You, in turn, have been very open about your feelings, about feeling disrespected by your husband, by his friends and by your tx team.  You have quite strongly voiced your opposition to returning to sexual activity for the time being, and that's very understandable.  We have never disagreed with you and have only urged you to keep yourself safe, just as you've claimed you are trying to do.

But then you tell us that not only have you returned to having sex (which is wonderful if that is what you really want), but you're having sex so often that even your culturally male-priviledged doctors are advising you to cut back.

So, it looks to me that you are willing to put your wants, your concerns and your recovery to the side so that your husband can do what he likes, despite the fact that we all agree with you and are concerned for your health.

So truly, I do not think there is anything more we can help you with.  I'm not sure there is anything left to say.  If that sounds dismissive, I am sorry, but you've obviously made the decision to put your husband's "needs" first, and while we have tried to encourage you to put your own recovery first, you have chosen not to do so, and then you tell us all of the reasons you can't say "no".  Again, you've made your decision as is your right; it is your life, and ultimately what we say to you is entirely irrelevant.  So, I don't see what more we help you with.

Far from being "dismissive or chirpy", I am sad for you and am also feeling frustrated on your behalf.  I've kept up with your story for days now, and I have very very often felt unhappy about your predicament.  But I don't feel unhappy any longer because every time you give consent to sexual activity, I must assume that you are doing so with a view toward making your life happier.  As you've pointed out, we are strangers, so I cannot let myself stay unhappy about your story.  I've been a part of this community for over 10 years, and I find myself feeling sad when members post about things that are making them unhappy.  I shouldn't allow myself to do that.  After all, I don't know you.   So, no.  "Dismissive" is an unfair word to use.

Sometimes I wonder if what you really want from us is some sort of "permission" to yield to your husband's desires despite your fears. 

I don't see anything changing in your situation.  As you've said, you can't say "no", so on that note, I really DO wish you the best of luck, and I really DO hope you can find a way to take care of yourself.  I hope your recovery goes well despite your husband, and I hope that one day soon, your life with get back to normal.

I personally do not have any more to contribute to this conversation, but once again I want to thank you for raising the topic.  Perhaps other members will have something to say that will be more helpful to you.  I'm sorry that I could not offer you solutions to your predicament.  I did try, though.

(edited to add):  I typed my post late last night from my e-reader which has one of those teeny tiny touchscreen keyboards.  I find it hard to use so keep any posts as short as possible.  Perhaps that's why my post came across as "chirpy".

[kristina]

I don't know how to explain all this to him (besides the obvious no) without it turning out of me being a bad wife (culturally, socially, religiously) and then the whole chorus of "don't get involved at all with sick people" starts. He is the one that gets the pity and the gold star for dealing with me and not of me having a major operation... if that makes sense.

Dear Ukrainian Tracksuit,
I have been thinking about the above and I still can't understand it, however hard I try. What does it mean when you mention " a bad wife (culturally, socially, religiously) ? Are you not right now a vulnerable transplant-patient in need of great care and a bit of pampering and certainly no stress whatsoever ... and is a husband in such an extreme rare situation not becoming a sharing and understanding best friend ?
Best wishes and good luck from Kristina.

[Charlie B53]

I may be difficult for many to understand some of the differences in social-cultural regions other than our very own.

Male/Female relationships can be far different when compared to different regions of the world.  While some of us may not agree, it is an elemental fact of life for those living in those regions. 

We ARE what we learn.  Growing up within a culture that is easily all that we know and it is simply a way of life.

The Female 'Rights' Movements within the U'S' and Europe are not necessarily the same as those in many other Countries.  While we may Wish it so, it simply isn't.

Far too many places Women are still abused, consider little more than 'property'.  Perhaps the men in those areas have never been taught to give consideration to Women's feelings.  Change takes time and effort.

With time and lots of communication hopefully this Poster can get her Man to become more consider of her.

I certainly Pray so.

Take Care,

Charlie B53

[UkrainianTracksuit]

Dear Ukrainian Tracksuit,
I have been thinking about the above and I still can't understand it, however hard I try. What does it mean when you mention " a bad wife (culturally, socially, religiously) ? Are you not right now a vulnerable transplant-patient in need of great care and a bit of pampering and certainly no stress whatsoever ... and is a husband in such an extreme rare situation not becoming a sharing and understanding best friend ?
Best wishes and good luck from Kristina.

I will answer your question, kristina. Personally, I do not consider myself a bad wife but in those three spheres, I am. Socially and culturally, I would be considered "a bad wife" because my husband would not be taken care of sufficiently. Perhaps not a bad wife for my actions but a bad choice of wife. "Socially", people with chronic conditions or any form of disability are considered to be a bad choice of spouse for reasons of being unable to keep your household managed and have children. If my husband would make a complaint to his family or friends, they will tell him he made a bad choice of spouse/choose a bad wife mainly based on my illness. If I relayed my problems to even a professional from that region, I would be told my husband is a man and naturally doing what men do, what do I expect?

Here is an example of a cultural example. We Skyped with my mother-in-law yesterday. She has never liked me solely for the reason (at the time) I was on dialysis and cannot give her grandchildren. She will say I am a nice girl and such but she thinks her son lost his mind to marry such a woman. Anyway, I was explaining I have a lot of swelling in my abdomen, especially around the incision. (The question was how I was I feeling, so I said so.) She said rather abruptly, "We know you aren't pregnant so don't show me." Now, she blames me for taking her son far away.

I have changed my mind about being considered a bad wife religiously though. That is another story but to address this issue, I am bringing in the big guns: an Orthodox priest. At least, he agrees with me. As a result, I have a plan for when I finally return home... if I am ever released from outpatient care. However, if we were back home (as in homeland), the opinion of the clergy would be different as well. I would be considered an extremely bad choice. Yes, while I am the one with the major operation, and require some care, it comes down to "well, you made a bad choice of spouse" in each case.

Charlie B53, you are very right on with your reply.

I live in Canada now so I see everything going on with the women's rights movement but the way you were raised is the way of life in your household. In Eastern Europe, we do not have the Me Too movement and it is laughed at. Well, it has been until very recently when a high profile politician sexually harassed a young journalist before people became outraged. Sexual harassment is simply considered to be complaining and some women will say a variety of things in order to tolerate it, say it is okay or say "it is just men being men." It is considered a part of life.

Last year, a law that decriminalises some forms of domestic violence was passed. This was to ensure "our culture" in that family issues are a private matter and the state involved in such issues is a "Western invention".

In recent years, there have been rape cases where the young girls have been harassed by strangers online relentlessly and told to shut up. A big story last year was of a 16 or 17 year old girl who was raped and thousands of people supported the accused young man. Burger King even made an ad mocking her story. It is fair to say these are the sensationalised stories but they demonstrate glimpses of an old mindset.

Feminism is considered an extremely bad thing that turns women unbearable and repulsive. It is interesting to me to see how it is embraced by some countries and considered a major problem, or something to avoid, in others. I received one of those "No Means No" stickers once and my husband looked at it and said, "you are not talking with those gross women, are you?"

So, Charlie, you are right that sometimes some people do not learn how to treat other people. Only mother and grandmother are the good women!

All of this is not an excuse or a pass for behaviors but rather to illustrate it is complicated. It is also true that no one here can help me but I am also not looking for approval to say things are okay to do. Quite the opposite. When I am home and have my own support system, instead of being in a place where I know no one else, I have a plan.

As per the topic overall, no sex for 3 days, and my pain is significantly better. Thank heavens... but there is a seroma after all.

[Charlie B53]

I can only Pray that your Husband comes to understand.  Would he read this thread without anger?  It may possibly give him pause for thought, and become enlightened to your position. Finding other methods for 'release' without actual penetration could help you both through this time of healing.

[UkrainianTracksuit]

Charlie, I thought about him reading this thread now. There is a lot of good "emotional" outpouring and good reactions from others he NEEDS to read. I second guessed having him read it because I used some bad adjectives or descriptions of him. I counted 8...and spoke not-so-nice of his mom. However, at this point, if it is harsh, that is fine because look at my feelings.

He doesn't know about my plan though but that just means conversation time.  And I also used the celebratory emoji to say I was smarter than him. Oops!

[Charlie B53]

Sadly yet today within some Cultures the Women are still considered little more than a 'Slave' to the Man.  Treated much like property to be used and abused in any way the Man wishes.  And some Cultures go so far as that the Man if he felt disgraced by the action of the Woman, may be expected to execute/murder the Woman in order to regain his honor.

Slavery in most cultures has been abolished.  The sad treatment of Women not so much.

Although many so called progressive/enlightened societies are much improved in our treatment of Women, we still have progress to be made in that there is still a large disparity in wages paid by employers in that those wages of women, in the exact same positions as men, are still being paid less than the man.

I can't speak for the rest of the world, but for me, if my mate is not in the same 'mood', is not a willing enthusiastic partner, I cannot find any enjoyment if she isn't also.  Where is the intimacy if she is not feeling the same as I?

As with any exercise, if it causes pain maybe you shouldn't be doing it.  Pain is a sign that something isn't quite right yet.  Whether a muscle is damaged or simply atrophied, it needs time and slow gradual exercise to become fully functional again. 

Many many men have and continue to suffer from low back pain from even what others may think of as only a small slight injury.  Pain is real.  Rehab can take far longer than most people think.  Very slow and easy use can take a surprisingly long time before full function can be regained, IF ever.  I broke my back in 98,, I still have problems today.

Progress takes time.  Your Husband really needs to learn much of this and perhaps then he will learn to become more patient with your recovery.

Take Care,

Charlie B53

[Simon Dog]

Back pain is definitely real.   My wife and I were in a three car/one fatality accident (elderly person crossed centerline and ended up killing herself).   My wife knew she was hurt, but it turned out to be worse that we imagined.  She goes for C4/C5 spinal fusion tomorrow.  Needless to say, I went on "inactive waitlist status" until she fully recovers.

[kristina]

Dear Ukrainian Tracksuit,
I have been thinking about the above and I still can't understand it, however hard I try. What does it mean when you mention " a bad wife (culturally, socially, religiously) ? Are you not right now a vulnerable transplant-patient in need of great care and a bit of pampering and certainly no stress whatsoever ... and is a husband in such an extreme rare situation not becoming a sharing and understanding best friend ?
Best wishes and good luck from Kristina.

I will answer your question, kristina. Personally, I do not consider myself a bad wife but in those three spheres, I am. Socially and culturally, I would be considered "a bad wife" because my husband would not be taken care of sufficiently. Perhaps not a bad wife for my actions but a bad choice of wife. "Socially", people with chronic conditions or any form of disability are considered to be a bad choice of spouse for reasons of being unable to keep your household managed and have children. If my husband would make a complaint to his family or friends, they will tell him he made a bad choice of spouse/choose a bad wife mainly based on my illness. If I relayed my problems to even a professional from that region, I would be told my husband is a man and naturally doing what men do, what do I expect?

Here is an example of a cultural example. We Skyped with my mother-in-law yesterday. She has never liked me solely for the reason (at the time) I was on dialysis and cannot give her grandchildren. She will say I am a nice girl and such but she thinks her son lost his mind to marry such a woman. Anyway, I was explaining I have a lot of swelling in my abdomen, especially around the incision. (The question was how I was I feeling, so I said so.) She said rather abruptly, "We know you aren't pregnant so don't show me." Now, she blames me for taking her son far away.

I have changed my mind about being considered a bad wife religiously though. That is another story but to address this issue, I am bringing in the big guns: an Orthodox priest. At least, he agrees with me. As a result, I have a plan for when I finally return home... if I am ever released from outpatient care. However, if we were back home (as in homeland), the opinion of the clergy would be different as well. I would be considered an extremely bad choice. Yes, while I am the one with the major operation, and require some care, it comes down to "well, you made a bad choice of spouse" in each case.

Hello Ukrainian Tracksuit and many thanks for answering. 
I still don’t understand, what your chronic kidney disease and current kidney transplant have to do with your social standing?
And your husband surely knew of the difficulty to have children with a chronic, most likely, genetically inherited kidney disease (as you were looking after your grandfather when he needed dialysis) ?
Your predicament makes me very sad, because I remember you from your posts in the past, when you appeared as a vivacious life-embracing girl and it is so sad, how “things” have developed for you since then. It is particularly sad to read, that you seem to be considered a “bad choice for a wife” because of your chronic kidney disease, which is there to stay with you for the rest of your life. Could it be that you have not fully discussed your life-long requirements and particularly since your double-transplant with resulting need of care and the fact that you not only have an obligation to your own well-being after the transplant, but also to the person who donated their organs to you when they died. Just imagine how very humanitarian and immense it is for a dying person to donate their organs ! Not many people donate their organs after when they die and you were so lucky to receive these donated organs and there is quite a responsibility involved to take the greatest of care after a transplant. I do hope your husband “comes around” very soon to comprehend, what you are actually going through right now and I do hope your own self-esteem won’t be inflicted by this current cruel situation.
I have been wondering about the mentioned cultural, religious and social matters involved. This has surprised me very much, because, for example, when Raisa Maximovna Gorbacheva became so unwell with Leukaemia, her husband, the former President Mikhail Gorbachev was instantly supporting her completely and he certainly was travelling with her to receive the best medical care for her. He also was always at her side when she was being treated by Professor Thomas Buechner, the leading haematologist in Münster,Germany. I only mention this to explain why I don’t understand, that social, cultural or religious matters should come into it, when two people love each other, marry and get together and do as much for each other as is possible in sickness and in health?
Best wishes from Kristina.

[UkrainianTracksuit]

kristina,

In regard to the question of CKD and social standing, many are of the belief that a person with chronic illness, such as renal failure, cannot live a full life. That is very far from the truth as I believe life is what you make it. As a result, such a person cannot be a complete partner and the spouse suffers in a variety of ways. It doesn’t make sense at all but this is a general attitude I have encountered. Secondly, since there is a lot of “macho posturing” in my husband’s field (think of how the president likes himself presented) so to have “settled” for a chronically ill wife means he is some kind of failure. It is small mindedness. Dating in very competitive in Russia these days (as I am sure it is in many places) but youth, fertility and beauty are in abundance, even for older men, so those of us with a chronic condition have rather impossible standards for a happy ending (this is the case everywhere, I imagine.)

My husband knew very well of my health situation from the beginning. I provided him with all the readable information I could. In turn, he learned a lot about dialysis, picked me up from every session (in clinic) and seemed rather supportive. This issue arose with his mother and grandmother who constantly nag him about him being such a handsome, strong, good-catch of a young man who should have children. It is a regular topic of their communication and though I do not want to get involved in “in-law drama”, I have told him that he needs to defend his own life choices as a man. Transplant is an area where he is vastly uninformed but knows it is a treatment, not a cure.



Your words concerning the deceased donor are especially relevant because I know that our Orthodox priest specifically said that my husband’s actions are disrespectful to the donor. As in, he is disrespecting the dead, which is a very very very very very serious matter. He has to answer for that himself. Personally, I think about my donor every day and remain in awe of the gifts I received from a stranger. Since these are gifts, they are to be treated with the utmost care and respect. That was my intention from the start.

My husband confuses “signs of improved health” with the ability to return to his needs and intimacy. He witnesses my improved energy (and this is fact, my energy since transplant has doubled or even tripled!), my test results in “perfect” range (except the ups and downs of the medications) and being within the window to return to intimacy. As a result, he assumed it was all systems go although I was uncomfortable with such a development. What he fails to realise is that it was a major operation (actually, he knows that, he was there during my hospital stay) and the healing requires time. The outside may look healed up but internally, that requires a lot more time. I think he understands that better now but he does have a selfish side that we all acknowledge exists. This morning, I could tell him I had no pain at all so it is rather simple arithmetic what caused it.


Thank you for the example of Raisa Maximovna. You have reminded me of another Raisa as well. Do you know the now famous story of Stanislav Yevgrafovich Petrov? His wife Raisa was diagnosed with cancer and he retired from the military to care for her. When she finally passed away, he was a shattered man. It was yet another example of devoted love. Perhaps I can compile stories of strong or admirable men that have taken on the role of caregiver.

[lulu836]

What ethnic group are you discussing?  Why is this conversation going on and on?  Several solutions have been offered but apparently none used.  Find something that works for YOU!  The concept of your having no personal say over what is done or not done with and to your person is insane.

[UkrainianTracksuit]

1) I think if you read the last post (and second last from kristina) that answer is really obvious. tl;dr? I understand that.

2) Why is this conversation going on and on? Ask those that make remarks or questions. People reply, so I reply. I will gladly stop replying and say Пока! which I did for a bunch of years because my dialysis life was great. As well, you don't really have to read this as there are topics that I overlook as well. For example, I know nothing about PD so I don't read those. Please do not assume no solutions have not been put into place. Obviously solutions have been used because we have come to an amicable detente.

[lulu836]

 
 ::groan::