Noone Else To Talk To.

[Roda]

I really feel like I am alone. I don't have many friends and the few I do, don't really understand me. I feel very sad about the fact my husband and I don't have a quality intimate relationship anymore. It all started when my youngest son was six months old (he is now 4 1/2). My husband and I agreed we did not want any more children and together we decided on him having a vasectomy. He had immediate complications from a massive hematoma. His surgeon blew us off for a week, poked at his massive private parts and said "it'll absorb and go down in time." Now mind you he was as black as an eggplant from is waist to his knees and everywhere in between. He was swollen down there about the size of a coconut. On about day 10 he got worse and found out the dr was on vacation. His partner, whom I thank God for, took him to surgery to drain the hematoma. He was sent home with a surgical drain. He recovered from that, had a few other setbacks that year which left him with some residual hematoma that encapulated. It caused much discomfort. He had another surgery a year later to remove that and an abcessed stitch that was left in there. Since his original procedure he has been left with chronic low abdominal pain and constant testicular pain. He takes tramadol, neurontin , ibuprofen and a tricyclic antidepressant for the constant pain. He has sufferd from chronic depression which the amytripyline has helped, but I don't think the dose is effective now. He has since developed hypertension and now takes two blood pressure pills to regulate. BTW he is only 33 years old! Our "personal time" has suffered greatly. He tells me it is as much physical (painful) as mental (not wanting to for fear of pain) that he just does not want to do anything. I have been very supportive of him these last few years, but I fear that we are spiriling into a rut that is going to be hard to get out of. He keeps telling me we need more "time alone" but then does not initiate anything. I always have to be the one to approach him and even then things don't alway work out. I am getting to the point of now not wanting to bother anymore because I don't want to get disappointed. I love him dearly, and would like that part of our relationship back. I know things won't be the same, but we can focus on the things that don't cause too much pain and work around it. He on the other hand is the one who sees the glass as half empty. He dwells on the things he has lost or can't do and gets depressed. I have tried to get him to start swimming for some exercise. It wouldn't cause any strain on things. It would make him feel better and probably would help his mood. He keeps telling me "I need to do something" and never does. I don't know what to do anymore or who to talk to. I don't want this to cause a rift in an otherwise great relationship. The past few years have not all been bad. This happening to us really put alot of other things in perspective for us. We decided to get out of debt and we realized the importance of spending more family time together. As of now we are debt free except for the house and now working on building our emergency funds. We have been blessed with being able to spend more time with the boys and do alot more for them. He is my love of my life and I hate to see him like this, but it is starting to take a toll on me. Well, I'm sorry this was so long, but thanks for listening!

[ravenwoodglass]

It sounds like he has been through a great deal of trauma. You mention that he is on meds for depression but has he been able to get any counseling to help with this? Unfortunately all too often they simply throw meds at us but don't give us any help with getting relief from the issues that caused the problem. Also worth investigating with the lower abdominal pain combined with the depression is the possibility that he may also be celiac and that for him the trigger was the surgery. It is a long shot but I would have them check his vitamin and mineral levels and also run a celiac panel, just in case.

[FMcGee]

Not to be all 1980s stereotypical therapist, but have you told him exactly how this all makes you feel? I think sometimes people just need to hear that, and then they'll realize their behavior is really diminishing someone else's quality of life. Also, erm... is he willing to do other things for you? So that you feel less, uh, deprived? Or is he just totally withdrawn? Because there is a world of difference between those two attitudes.

[Roda]

It sounds like he has been through a great deal of trauma. You mention that he is on meds for depression but has he been able to get any counseling to help with this? Unfortunately all too often they simply throw meds at us but don't give us any help with getting relief from the issues that caused the problem. Also worth investigating with the lower abdominal pain combined with the depression is the possibility that he may also be celiac and that for him the trigger was the surgery. It is a long shot but I would have them check his vitamin and mineral levels and also run a celiac panel, just in case.

The amytripyline was originally prescribed for the pain since his doctor said it has had some good results in cancer patients. It did have the added benefit at first to help his mood. But unfortunatly now it is not helping. I doubt he would even consider celiac testing and I don't think it is a problem anyway, but who knows. He has a strong family hx on his father's side of mental ilness and such. His sister was diagnosed bipolar when she was a child. Don't know if that could be playing a role. It took me 6 months to convince him that he needed to go to the doctor and get his blood pressure checked. They have had a hard time getting it down enough so they recently added the second bp pill. It has worked. What bothers me is that at 33 yrs old he is on two bp meds. His Pa(he won't see the regular dr) thinks his bp is hard to manage because he is too high strung. I want him to see a real doctor (I'm not fond of his PA) so he can have a battery of blood work done, but he won't go. I think he thinks that one day he will wake up and it will all go away. He tried zyban to quit smoking over 8 years ago and did not have a good reaction to it. He said it made him think very strange thoughts and threw it away. We have been hesitant to try antidepressents since. The one he is on now does not seem to have that effect. Any kind of medicine to "relax" you tends to have the opposite effect. Valium for instance triggers migraines and he gets so hyper and very "uninhibited" and he usually is a very private person. I have mentioned recently that we might need to speak to a counsler, but he is hesitant since this is a private matter. I think this would be a good idea. I have found a specialist at UT in Knoxville that I would like for him to see. He was rated in the top 10 doctors in the south and is a Urologist so we will see. I appreciate your kind thoughts. Thanks.

Edit: The pain he gets in his abdomen is related to the procedure. Without going into great detail, but it is related. However I think he should have some type of scan to see what is going on in there. With all the bleeding who knows what it left in there.

[Roda]

Not to be all 1980s stereotypical therapist, but have you told him exactly how this all makes you feel? I think sometimes people just need to hear that, and then they'll realize their behavior is really diminishing someone else's quality of life. Also, erm... is he willing to do other things for you? So that you feel less, uh, deprived? Or is he just totally withdrawn? Because there is a world of difference between those two attitudes.

Yes I have told him how I feel. Things still do work, but unfortunately rather quickly. I think it is a mental thing that if he gets it over with quickly then he won't have to deal with any pain. His doctor told him the more he does things the less back pressure from epidimal congestion he would have. I have asked him if I am the problem and if he does not find me attractive anymore and he tells me that I'm not the problem. He still will cuddle with me and we spend time that way, so I don't think he is totaly withdrawn. Thanks.

[ravenwoodglass]

The amytripyline was originally prescribed for the pain since his doctor said it has had some good results in cancer patients. It did have the added benefit at first to help his mood. But unfortunatly now it is not helping. I doubt he would even consider celiac testing and I don't think it is a problem anyway, but who knows. He has a strong family hx on his father's side of mental ilness and such. His sister was diagnosed bipolar when she was a child. Don't know if that could be playing a role. It took me 6 months to convince him that he needed to go to the doctor and get his blood pressure checked. They have had a hard time getting it down enough so they recently added the second bp pill. It has worked. What bothers me is that at 33 yrs old he is on two bp meds. His Pa(he won't see the regular dr) thinks his bp is hard to manage because he is too high strung. I want him to see a real doctor (I'm not fond of his PA) so he can have a battery of blood work done, but he won't go. I think he thinks that one day he will wake up and it will all go away. He tried zyban to quit smoking over 8 years ago and did not have a good reaction to it. He said it made him think very strange thoughts and threw it away. We have been hesitant to try antidepressents since. The one he is on now does not seem to have that effect. Any kind of medicine to "relax" you tends to have the opposite effect. Valium for instance triggers migraines and he gets so hyper and very "uninhibited" and he usually is a very private person. I have mentioned recently that we might need to speak to a counsler, but he is hesitant since this is a private matter. I think this would be a good idea. I have found a specialist at UT in Knoxville that I would like for him to see. He was rated in the top 10 doctors in the south and is a Urologist so we will see. I appreciate your kind thoughts. Thanks.

Edit: The pain he gets in his abdomen is related to the procedure. Without going into great detail, but it is related. However I think he should have some type of scan to see what is going on in there. With all the bleeding who knows what it left in there.

It might help you a bit to get some counseling to deal with this on your own. You may want to consider this. The family history of mental issues could very well be associated with neuo predominent celiac disease. I should also note that for my famiy the meds that we were typically prescribed made us worse and in the case of my children caused some very dangerous sideeffects on their mental stability. The neuro effects of celiac had more of an impact on the lives of my family, parents, children and even my husband than GI issues. The mental effects can rear their heads for years before any GI symptoms show up. For myself those issues appeared almost 30 years before GI issues became any thing that seemed out of the norm. As I said it may not be an issue for him but if you can get him to get this ruled out it would be a good idea. The urologist can order testing for his vitamin and mineral levels and also do testing for anemias while he is there. If your husband is reluctant to you being with him during the exam you can write a note to the doctor letting him in on the full range of impact that he has had since the surgery. Because of the privacy regs he wouldn't be able to discuss your husbands findings without his permission but you can contact the doctor without issue. If the doctor decides that levels testing are needed they can be ordered on the lab slip without your husband being told in detail the tests that are being run.

[SGWhiskers]

From personal experience, antidepressants can take sex drive to zero. Wellbutrin often has the opposite affect. I'm sorry he had such horrible complications from the surgery. I hope that he finds some relief and things shift back towards some new version of normal.

Also, I hate to exercise, but am more likely to do so if someone says lets walk tonight and then when it is time hands me my shoes and walks with me. Maybe try that with swimming.

[Roda]

From personal experience, antidepressants can take sex drive to zero. Wellbutrin often has the opposite affect. I'm sorry he had such horrible complications from the surgery. I hope that he finds some relief and things shift back towards some new version of normal.

Also, I hate to exercise, but am more likely to do so if someone says lets walk tonight and then when it is time hands me my shoes and walks with me. Maybe try that with swimming.

Welbutrin is out it is the same as zyban and it does not agree with him. I have offered to swim with him but he wants to find something he can do by himself. He keeps mentioning kyaking. Hope he can find his niche.

[celiac-mommy]

I have to agree with the counceling. The trick is, to find the right kind of councelor. From personal experience, I had a sexual trauma when I was 18, which really affected me once I was in an intimate relationship with my husband. It caused me anxiety and inability to really be intimate, and then from there came the depression. I talked to my dr, and they suggested talking to a therapist. I had to call a # thru my insurance, but their specialty was to interview you a bit and fit you with a few different therapists based on your needs. The one I chose was a specialist in sex therapy. She was amazing and really helped me work through everything that had happened to me as well as slowly enter a healthy sexual relationship with my husband. It was important to move forward slowly, and for me to communicate with him that I had to take one thing at a time. It was a fairly slow process, but it was successful (and we got pregnant with our daughter shortly after ) It's important to keep communication open though. I'm sorry that you're going thought this, I know how hard it is.

[tarnalberry]

I can relate, but in this story, I'm your husband.

My first suggestion: couples sex counseling. I went for three years, and it was a lot of work (mental), but things are doing better - not great, just better.

My second suggestion: read all you can about chronic pain. Honestly, his reaction does *not* sound abnormal, and has nothing whatsoever to do with you at all. Chronic pain, particularly pain that affects that area and limits your sex life, is a HUGE impact on the psyche. I would bet that, though he might admit it, he feels like less of a man, less of a human, pretty much broken, and may feel like he doesn't deserve a marriage any more. And, I must repeat, this has NOTHING to do with you - which also means that you can't really help him fix it. You can be supportive in his attempts to fix it, but the more you focus on "helping him get over this" and "helping to work on the problem", he may well just feel more broken and less deserving.

It's hard to convey how very fundamentally broken this can make a person feel. Not just handicapped, but not-fully-human any more. You lose (in your mind, because of the pain), the ability to do something that is almost definingly human, something that we all take for granted, and something that is expected as just part 'of the bills' in marriage. (Yeah, that sounds a bit heavy handed, but it really is a "I have this responsibility, and I can't meet it" sort of thing. I would imagine that it may quite possibly be harder for some men than women, from a cultural perspective.)

Imagine the following: there's a hot burner on the stove. You're asked by someone you love very much to place your hand on the hot burner, and keep it there. If you don't... well, you feel you might lose that person you love very much. So you put your hand there, and keep it there. And it burns. It causes searing pain that is almost more than you can stand. But you do it for your loved one. And then, every now and again, they ask you to do it again. You know what it's going to feel like, you know that it's going to cause you extreme pain. You try to do it, though, because your loved one expects it of you. Really, everyone expects you'll burn your hand repeatedly for your loved one. And soon, every time they ask you, you can already feel the pain, you already know that you'll be driven nearly out of your mind with the pain. And you are scared - scared of the pain, scared of turning down your loved one and disappointing them and loosing them. So you're stuck between two equally horrifying things. At some point, it's nearly crippling.

This isn't the sort of thing I'd suggest working out alone, or just with medication. And this isn't a short journey - I was in counseling for 3 years, and 4 years after that, we're still not back to before any of this started, but we're in a place that we are ok with, with is all that matters.

Until you can make progress, find other ways to be intimate. It may be hard, particularly at first, for him to be ok with ignoring what's broken, and doing things a different way, but it's an important part of the process.

[Roda]

I guess I could try counseling without him. I don't know if he will come to that decision on his own or not. He knows about this specialist I found, so maybe someday he'll go. I would love for him to find some alternative therapy that will work besided medication. He has even mentioned that it would be nice to get rid of some. He refuses to take anything stronger than the tramadol and has never increased his dose in the last 3 1/2 years. The thought of becoming more dependent on stonger meds scares the crap out of him. Plus he could not do his job on anything stronger. He is a butcher/meat cutter and, well lets just say, he would like to keep the rest of him intact. His sister abuses drugs/precription drugs and he has seen the horror of what she has done to their mother over the years. He witnessed first hand what kind of mess she and her boyfriend made of their mom's house and the inhumane things they did to their animals. Pretty sad story. My children don't even know their aunt and have never met her because that is not the kind of influence my kids need to be around. I really appreciate everyone's thoughts and input. I do think there is light at the end of the tunnell, it just might be a long one, but that's alright!

[ravenwoodglass]

I guess I could try counseling without him. I don't know if he will come to that decision on his own or not. He knows about this specialist I found, so maybe someday he'll go. I would love for him to find some alternative therapy that will work besided medication. He has even mentioned that it would be nice to get rid of some. He refuses to take anything stronger than the tramadol and has never increased his dose in the last 3 1/2 years. The thought of becoming more dependent on stonger meds scares the crap out of him. Plus he could not do his job on anything stronger. He is a butcher/meat cutter and, well lets just say, he would like to keep the rest of him intact. His sister abuses drugs/precription drugs and he has seen the horror of what she has done to their mother over the years. He witnessed first hand what kind of mess she and her boyfriend made of their mom's house and the inhumane things they did to their animals. Pretty sad story. My children don't even know their aunt and have never met her because that is not the kind of influence my kids need to be around. I really appreciate everyone's thoughts and input. I do think there is light at the end of the tunnell, it just might be a long one, but that's alright!

There is another possibility with the continued pain. I have had something called Reflex Sympathic Dystrophy set in after leg surgery. It caused intense burning pain. You may want to find out if that may be a possiblity also.

[mushroom]

There is another possibility with the continued pain. I have had something called Reflex Sympathic Dystrophy set in after leg surgery. It caused intense burning pain. You may want to find out if that may be a possiblity also.

Interesting that you have Reflex Sympathic Dystrophy. My gluten intolerant sister also developed this in her arm after breast surgery and lymph node removal. I had never heard of it before.

[ravenwoodglass]

Interesting that you have Reflex Sympathic Dystrophy. My gluten intolerant sister also developed this in her arm after breast surgery and lymph node removal. I had never heard of it before.

The doctor said it was a reaction of the sympathetic nervous system to the surgery. My knee worked great but the pain from the RSD and the loss of muscle mass in the leg were shocking to the doctor. My leg looked normal before the surgery but when I had the stitches removed just a week or so later my leg looked like a stick. Fortunately with PT and meds it did resolve but it did take some time. I wonder if the bad neuro involvement from my undiagnosed celiac had something to do with it but I will never know.

[Roda]

There is another possibility with the continued pain. I have had something called Reflex Sympathic Dystrophy set in after leg surgery. It caused intense burning pain. You may want to find out if that may be a possiblity also.

How did the doctor treat the RSD? I was watching something and heard that hyperbaric oxygen therapy has been shown to help break the pain cycle. I am wondering how and from whom I could find more information on this even though his problem is not in his extremities. Still valid, it is a chronic pain problem.

[ravenwoodglass]

How did the doctor treat the RSD? I was watching something and heard that hyperbaric oxygen therapy has been shown to help break the pain cycle. I am wondering how and from whom I could find more information on this even though his problem is not in his extremities. Still valid, it is a chronic pain problem.

They gave me amitryplimine in a low dose and also used ultrasound therapy. I don't know if RSD is something that effects just the arms or legs. It is an extreme response of the sympathetic nervous system to the surgery or an injury. If you can I would talk to the doctor about the hyperbaric treatment, you also might think about contacting someone who deals with chronic pain issues, your doctor should be able to guide you with this.

[still tiredofdoctors]

Now I am going to sound like a stereotypical physical therapist!

I treated Pelvic Pain prior to having to "retire" and close my clinic due to illness . . .

I agree that your husband needs to have additional testing to find out if anything additional is "brewing" in his testicular and/or perineal area. Perhaps an MRI? I actually treated a patient who had a perineal abscess that had been undiagnosed for QUITE some time. He ended up having to have surgery to remove a significant amount of infection and necrotic (dead) tissue around and behind his testicle, and the wound needed to be left open to heal "from the inside out".

Because the perineal area is greatly composed of muscle tissue, it is not out of the realm of possibility that he sustained muscle injury, as well. A physical therapist who specializes in Women's Health should also be able to treat perineal pain in men, as well.

Reflex Sympathetic Dystrophy can be a definite cause for concern. Studies have shown that, if it starts moving from the affected (usually limb) area UPWARD toward the brain, it can actually ascend to the thalamus portion of the brain. This can cause a condition known as "thalamic syndrome" where the pain actually crosses over to the other side of the body and becomes intractable throughout the entire body. Quite often it is "poo-poo'ed" by the medical community as a "catch-all" diagnosis, but when I suspected it, I did not take it lightly. Neither did the neurologists who referred their patients to me.

The treatment that I found was most successful was a combination of manual therapy to reduce any muscle dysfunction in the area, "desensitization" techniques that start with using something as light as a cotton ball on the area for approximately five minutes three times per day, then increasing the textures as each becomes tolerated (again, a skilled PT can fully instruct you on this after evaluation), and High Voltage Pulsed Galvanic Electrical Stimulation. A physician (typically a neurologist) who fully understands RSD is essential if your husband does have this. Most that I worked with prescribed Neurontin (Gabapentin) to help diminish the nerve inflammation and Elavil - an antidepressant that allows the patient to get REM sleep.

REM sleep is incredibly important with an injury such as your husband has sustained. A significant number of neurotransmitters are emitted during that time, along with Growth Hormone. While the latter is secreted in childhood and adolescence in order to physically GROW, as adults it is secreted in order to REPAIR minor injuries that are sustained daily. It also helps to repair major injuries, as well.

I am so sorry that you are having to go through this right now. I cannot imagine the stress this is causing you. I hope you are able to get some answers that help alleviate the problem -- and soon.

Sending you many, many, ((((((((((((((((((((((hugs))))))))))))))))))))))),

Lynne

[Roda]

Still tired of Doctors: WOW! What a lot of good information and a lot to think about. I have been complaining that none of the surgeons/urologists (we are on #5) have ordered any kind of diagnostic imaging tests or blood work for him. I am an x-ray technologist and I have done many x-rays and ct scans for people who have a lot less symptoms. I'm not poking fun, maybe they just have a better doctor. The only imaging he has had was two scrotal ultrasounds, one after vasectomy on day 10 before the surgical drainage at my demanding request to check viability and one about 3-4 months after that to check on resolution. Nothing since 2005. Since then he has seen various doctors who have told him it is all in his head (the most superior one ) and to suck it up to the current one putting him on the neurotin and elavil to see what it would do. The current urologist even told him he did not know what else to do. I have made a call into a supposed good urologist at UT in Knoxville. I breifly discussed the issue and asked if this was something the doctor would be willing to see. They asked if he had tried any PT. This was over a year ago and I still can't convince my husband to go see him. I really think this doc may have some other strategies that noone else has mentioned. I have tried to do some research and I don't get much on it. Most things mention the possible complications but really down play it. I believe it is a much bigger problem statistically.

Edit:

The info on the elavil to help get REM sleep is interesting. I have been trying to get my husband to go for a sleep study test. April 2008 he had sinus surgery for blocked sinuses and is doing well from it. He snored so bad before surgery and we thought it would improve after. It has not and I actually have heard what seems to be gasping noises while he sleeps. After these episodes he stirs in his sleep and does not appear to be resting well. He is always tired and fatigued. The elavil has not helped that but then again it would not help sleep apnea. He has gained about 30 lbs in the last 1.5 yrs so I'm not sure that's helping either. Since being on the elavil he says he has the munchies all the time.

[still tiredofdoctors]

Edit:

The info on the elavil to help get REM sleep is interesting. I have been trying to get my husband to go for a sleep study test. April 2008 he had sinus surgery for blocked sinuses and is doing well from it. He snored so bad before surgery and we thought it would improve after. It has not and I actually have heard what seems to be gasping noises while he sleeps. After these episodes he stirs in his sleep and does not appear to be resting well. He is always tired and fatigued. The elavil has not helped that but then again it would not help sleep apnea. He has gained about 30 lbs in the last 1.5 yrs so I'm not sure that's helping either. Since being on the elavil he says he has the munchies all the time.

Oh My Gosh!! Get him to a sleep study!!!!! I would almost GUARANTEE you that he has apnea!! If he does, there is no way he is getting into a "repairing" sleep mode.

Unfortunately, I think that Elavil DOES increase your appetite. My patients complained of that, as well!

Also -- and this is going to be the one that he won't like -- he desperately needs to get aerobic activity AT LEAST three times per week . . . four to six would be better.

Of course the "rub" (SHEESH -- no pun intended) is that trying to find activity that doesn't irritate the scrotal area is going to be difficult. DEFINITELY swimming would help. If, though, there is any kind of torsion with the sacrum that is causing increased sensitivity at the S2 nerve root, it will make the pain worse - not better. The key to ensuring that perineal pain is so multi-fold . . .

• Ensure that there is no obvious lesion causing the pain
  
• Ensure that there are no adhesions that are limiting the mobility of the tissues in the area
  
• Do a FULL-BODY evaluation in order to look for underlying causes of possible increased nerve irritation
  
• After checking for strength and flexibility inconsistencies, perform a full gait evaluation -- look for anything that can give you a clue as to any additional musculoskeletal dysfunction OR if something with regard to the GAIT ITSELF is causing more problems
  

I am a real stickler for those types of things. I was fortunate enough to have two mentors who were phenomenal. They taught me SO MUCH about the subtleties that can cause an enormous amount of trouble.

If you want to PM me, I have some additional suggestions - but they are probably not for public viewing!!

I wish you the BEST of luck. This has to be such a struggle for you, as well.