I started writing this out in prose form, and it was reaching epic proportions. I will try a timeline. (Edit later: oh well, this is long too! Sorry.)
*Married 1989 - dated 18 mos, met through a mutual friend. DH's intellect and wide range of experience are what attracted me initially. The sex was great. However, I failed (declined?) to pick up on what I came to realize was alcoholism.
*Bought our first house in 1990. Things continue to go along well, with some therapy for me to deal with FOO issues.
*Began trying to conceive in 1991. No luck. Infertility treatment revealed that I have polycystic ovarian syndrome (PCOS) which means my hormone levels are all messed up. After some minor infertility work, we conceive our son, who is born 9-1993.
*DH is laid off from his law firm when I am 5.5 mos pregnant, as their receivables were weak. DH's clients decide to go with him, and we open the law practice.
*After DS is born, things start downhill. I end up with bad post-partum depression, and DH withdraws completely from the relationship. I eventually (after nursing) start Zoloft, which is helpful. DH is unsupportive of any such medication; his lack of support (on this and most other issues) is fueled considerably by his mother, who was interfering considerably. There is no sex from shortly after DS is born to mid-1996. DH elects to sleep on the couch, for reasons that are still unknown (house only had 2 bedrooms and DS was in one).
*A large blowup occurs in 1996, which results in a temporary reconciliation and some sex. It does not last, and DH continues to withdraw and focus all energy on the business.
(Side note - I have always been the legal secretary, and made a conscious choice to abandon my life dreams (get my MDiv) in order for him to achieve his. I have since been able to make considerable strides in my career without benefit of advanced degree - but it would still be nice to have the sheepskin.)
1998 - MIL dies after a 5-month battle with Kreutzfeld-Jakobs disease. DH deals with it badly, mainly by drinking more.
1999 - my dad dies after a 2-year battle with non-Hodgkins lymphoma. My family repays my efforts to keep them out of probate by accusing me of all kinds of illegal doings. I establish and continue to maintain considerable distance, which has resulted in a much calmer existence for me.
*2000 - In mid November, DH comes down with a bad respiratory infection. After several weeks of being sick, and several rounds of antibiotics, we do a CT scan, which reveals a lump on or in his lung. After further testing, we discover it is actually an abscess in the lung, caused by his drinking - he aspirated saliva while passed out, and since he hadn't seen the dentist in years, the bacteria in the saliva caused the abscess. Up side: he quit smoking and drinking, and decided maybe dentists weren't the spawn of Satan after all.
*2001 - we move to another house (more size, better setup, etc.). Now there are 3 bedrooms, with one of us in each. No improvement in the "relationship".
*2002 - I decide to return to Weight Watchers and battle the problem in earnest (the PCOS is responsible for low metabolism, along with a host of other problems). My success (to date have lost 40 lbs) fuels better self-esteem on my part. The "relationship" has not changed for the better, other than being on a civil plane. It has not worsened, however.
*2005 (January) - Out of the blue, DH tells me he wants to "get romantic with me again." He alleges he has tried this but I have been unresponsive (it's hard to see such things when you haven't looked for them for 8.5 years). At any rate, we get back together, and things are very, very good.
*The libido issue begins to creep in about a month later. After tears on my part, and claims from him about how he "just doesn't feel like it as much", we agree on 2X a week, with more if we are both interested.
Things continue on, doing well. However, perimenopause has had an interesting effect on me - my sex drive is through the roof. This results in much frustration on my part, vis-a-vis the frequency and variety of our sex life. I think that's about when I started lurking here, and was so impressed by the intellectual level of the conversations.
I voice my frustrations to DH, who promises to "work on it". When I see this classic phrase echoed on this and other boards, I start getting worried, but keep trying.
*May 2005 - after noticing blood in his urine, DH has a cystoscopy. A large tumor is found in his bladder and removed, and the pathology report gives us the diagnosis of Stage 3, Grade 2 bladder cancer.
DH has always been highly proactive, and he moves immediately to assess his options and decide on a course of action. We do not have health insurance, so we are able to push the process along much faster.
We decide on a radical cystectomy, at one of the finest cancer hospitals in the country and the best surgeon for the job. A radical cystectomy removes the bladder, prostate, lymph nodes in the area, seminal vesicles, and part of the vas deferens; then a new bladder is built from part of the small intestine and re-attached to the ureters and urethra. A stoma is not necessary.
He has the surgery last June, which involves an 8-week recovery. He recovers VERY well. The pathology from the removed items comes back completely clean, to our great relief.
*Part of the operation includes a 3-piece inflatable penile implant, because the "radical" part generally implies it's too advanced for nerve-sparing surgery. We discover, to our chagrin, that we mis-read the contract and need to come up with more $$ when it's time to actually hook up the implant, so we have to put it off for another 7 months. We do find out, however, that sexual pleasure can be had without an erection, including an orgasm. The previous issues fade to some degree, given what we've been through.
*We get into a life rhythm, post-surgery. DH's libido seems to be steady once he is healed, but he then develops a small tissue growth over the urethral opening to the new bladder, which means he has to catheterize several times a day. This goes on until May of this year. His interest in sex wanes somewhat, but he makes an effort.
*He gets the urethral obstruction removed when he has the implant hooked up in May. All goes according to plan, although he is sore as he!!.
*At his 3-week checkup, the urologist tells him he needs to inflate the implant every day to insure good healing and continued tissue health. 1st 2 weeks - once a day, then 2X a day thereafter. He follows the program for a few days, then starts skipping times because it hurts. (The urologist told him this would happen, and the only way to get past it is to take the pain meds and inflate.)
*Our situation now is that he's completely healed, completely cancer-free, able to maintain an erection for as long as he wants - and has put not just sex, but our relationship in general at the bottom of his list. He has a wide variety of reasons, ranging from the usual ones seen here to not wanting to inflate the implant. I have told him repeatedly that the implant is his call; if he would rather not, we have options.
He will say he is tired, yet stay up watching TV.
He will say he has a muscle ache, then go bodysurfing with DS.
Basically - he will make time and effort for others, and I drift to the bottom of the pile. I am frustrated because as we prepared for the surgery, he sounded EXTREMELY grateful for and excited about the implant, and certainly seemed very enthusiastic post-surgery. Now, I have what I call "Evil Twin Thought Moments" where I contemplate requesting a refund of my half of the cost of the implant. It just seems odd to me that he would go through considerable pain (not to mention cost) for such a device, just to let it go unused.
He threw his back out last week, and has been absolutely awful. He's a rotten patient so I know what to expect, but this was really bad. I finally told him last night that I was very concerned that we were headed back to the dark place of our relationship, and that I really didn't want that to happen. I told him I felt I had dropped to the bottom of his priority list, and maybe even off of it. He apologized, and things have settled somewhat. He did lash out at me today while we were at work, and I tried to remember what GEL had suggested about quietly explaining one's position repeatedly. He did back down, and it seems like we have a truce in place.
Nothing in the operation could have had an effect on his testosterone levels (they told us this up front), and given the extensive medical attention he's had, I know there is no medical reason for his flip-flopping libido. But like so very many people on this board, I cannot get my head around a situation where a man who had decent libido not too long ago, and who need never worry about ED, seems to want a "marriage" where he gets all the benefits (including an unpaid secretary) and I never get laid unless HE'S in the mood.
Sorry this is so long - it's a lot of history, but it's all related. As I look at this, I guess it's amazing that we've survived it at all.
I appreciate anyone's thoughts, suggestions, or 2x4s upside the head.
No 2x4's here. You've been through the ringer. Suggest you get a book called "Making Love Again" which is specifically about dealing with erectile issues after cancer. Y'all have the mechanics down, but the emotional-psychological side that the man faces is practically impossible for a woman to understand. This book really opened my eyes.
My late H was impotent from 30+ years of diabetes, and he also had the inflatable implant. To be honest, we didn't get all that much use out of it. For a guy, everything in him tells him that this is supposed to be a spontaneous, natural process. Sometimes people are surprised at their reactions when they have the surgery. Sometimes the woman feels "cheated" because he can get an E and it has nothing to do with her. But the guy is faced with this mechanical pre-emption (is that a real word?) of a pleasurable process that was pretty much the center of his world before.
I think after you read this book, you will have a LOT more compassion for him. The book is written by a couple, and they had an extremely active vibrant sex life before he got cancer. So they may be somewhat atypical. They were extremely motivated to get their sex life back. Even so, the issues were excruciating for them and almost drove them apart.
In my current R with my BF, he also has ED from drinking, smoking, heart issues. Yeah, my Red Flag detector is busted. Anyway, one thing you have surely gotten from reading this board is that there is a whole lot more to a sex life than willingness and functioning equipment. It's a three-ring circus of emotion, pride, power, fear, intimacy, trust, anger, physical issues (his AND hers), and an endless array of booby traps (excuse the expression). Frankly, it's a wonder ANYONE ever has sex IMHO.
You might also read "Peace Between the Sheets" which focuses on emotional intimacy, fun, pleasure, excitement, and less on penetration, ejaculation, and orgasm.
It's odd how often bladder cancer is found in alcoholics.
This board is slow on the weekends-- you'll probably get more comments next week.
Thanks, Lil. I really appreciate your insight. I do have "Making Love Again", and I'm going to re-read it in light of what you wrote. I would say my DH is not as motivated as the co-author of the book, but I know that I can't ever truly understand the emotional side of it, just as he really couldn't understand my anguish when we couldn't get pregnant.
I don't recall our urologist mentioning alcohol as a cause of bladder cancer - DH's former smoking habit was the big clue. I have lost friends to leukemia who were recovering alcoholics. I think I'll ask the next time we're there for a checkup - now I'm curious.
Quote: I can't ever truly understand the emotional side of it, just as he really couldn't understand my anguish when we couldn't get pregnant.
I think you've put your finger right on it here. This is the only thing for a woman that's remotely like ED for a man, except possibly a woman who wants to breastfeed and for some reason can't make that work. For a woman, not being able to get pregnant does undermine her sense of her own "womanliness"-- it is a way that her body is betraying her. But for a guy who may at one time in his life have experienced spontaneous erections (even unwanted ones when he was a teen), NEVER to be able to have a reliable erection is a misery that is with him constantly. It's a matter of encountering your "inadequacy" every single day. And when your woman tells you "it doesn't matter," (I thought that was a helpful thing to say...) it hurts even worse. It's a way of saying his erections don't matter, thus HE doesn't matter. I didn't say it was logical.
Re bladder cancer connection-- I think I got that wrong. I think it's smoking that is connected with bladder cancer. I remember when I read that that it struck me as odd. Go here- American Cancer Society.
Quote: Detailed Guide:
Bladder Cancer
What Are the Risk Factors for Bladder Cancer?
Smoking
The greatest risk factor for bladder cancer is smoking. Smokers are more than twice as likely to get bladder cancer as nonsmokers. Smoking causes nearly half of the deaths from bladder cancer among men (48%) and less than a third of bladder cancer deaths in women (28%). Some of the carcinogens (cancer-causing chemicals) in tobacco smoke are absorbed from the lungs and get into the blood. From the blood, they are filtered by the kidneys and concentrated in the urine. These chemicals in the urine damage the urothelial cells that line the inside of the bladder. This damage increases the chance of cancer developing.
Anyway, one thing you have surely gotten from reading this board is that there is a whole lot more to a sex life than willingness and functioning equipment. It's a three-ring circus of emotion, pride, power, fear, intimacy, trust, anger, physical issues (his AND hers), and an endless array of booby traps (excuse the expression). Frankly, it's a wonder ANYONE ever has sex IMHO. 