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A lot of pain and fear

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Chronic Pain
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Posted 10/11/2016 2:31 AM (GMT 0)
I am a 45 year old male. I have had several surgeries and injuries. Including bilateral inguinal hernia repair with mesh in 2010. I was also beaten up in 2011. The 2011 attack I was stabbed multiple times in the abdomen and a laceration to my thigh resulting in a severed major vein and nerve. Additionally my testicle and groin were severely bruised and swollen. The vein and stab wounds were surgically repaired during emergency surgery.

Since then I have had severe pain in the groin, testicle, and lower abdomen. The nerve pain in my leg has been treated with Lyrica and more recently gabapentin with some success. But the groin and abdominal pain I tried everything my PCP could throw at me. It works for a while but I wind up taking a lot of it and that scares me. I fear dependence, addiction, and spiraling out of control. The pain Meds make me tired, depressed, and I just can't take it any longer. The thought is my pain is pelvic pain syndrome.

I saw a local urologist who believes that an orchidectomy may be the solution. The general surgeon who sent me to him as an option also recommend seeing a pain management specialist. Obviously I am not thrilled about losing a testicle but I also want off the oral meds so hopefully I can get back to normal.

So my question is this. After searching the web (we don't have many doctors and no specialists within 200 miles) I can't seem to to get a sense of whether an intrathecal pump would be an option to talk to a pm doctor about or should I just let the urologist take the testicle with a 50/50 chance of pain relief. I don't know how long it will take to get to a pm doctor so I don't want to waste a lot of time if the answer will likely be "no"

My fear of pain pills is greater than my fear of losing a testicle, but if an intrathecal pain pump will take the pain away I would consider that. Anyone help with better information? I would be grateful. Thank you
Posted 10/11/2016 3:38 PM (GMT 0)
Hello CWE & welcome to Healing Well. Sounds like you have a lot of different things going on, so sorry to read this. As far as the Gabapentin goes I do not know what dose you are on but generally the dr will have to ramp up the dose over time to get a person to the proper therapeutic level. That would be a medication I would not have much fear of taking at all. My husband has been on it for years for diabetic neuropathy.

I agree with you removing a testicle seems a little extreme & should be a last resort type of surgery. At least explore other options first. However, many men do have a testicle removed for various conditions so its been done for a long time. You mentioned the possibility of being referred to a pain mgt dr. I would certainly consider going this route. There are many different procedures a pain mgt dr can do that may be beneficial to you. Treating pain is their specialty & they are much better at trwating pain than any other dr. They don't just hand out oral meds to patients. No one wants to be on oral meds the rest of their life but when it comes to having some quality life that can be the only option for some of us. Any medication taken long term runs the risk of becoming tolerant to it. When I say any medication I mean exactly that. I take 3 blood pressure medications, we have to switch them up from time to time because they stop working after awhile. I realize that you are limited locally for drs but traveling is worth it to get the proper care needed. Many people here at Healing Well travel to see specialists. As far as addiction goes that happens when a person abuses their medication.

Before any dr would consider implanting a pain pump you would have to exhaust all other forms of pain relief. Also, I am not sure that a pain pump would help your condition, keep in mind a pain pump will only cover one problem not the entire the body. Pumps are a last resort. I have done this route since 2005. You can go to Medtronics.com & see if your condition is listed there. They have a user friendly website.

I wish I could give you some better input & that you were not in the situation that you are.But getting the best proper care is vital. Keep us posted on how you are doing. Take care.
Posted 10/11/2016 8:39 PM (GMT 0)
Thank you Susie. I think that is where I messed myself up, trying to read online and comprehend what is fact and fiction and decipher the medical lingo. Medtronic was like the top google result and it basically said "Chronic pain" which by their definition it fits. This pain has been around for 5 years and is worsening. Epainassist specifically says it can be used for pelvic pain syndrome which the symptoms fit, but outside of that it seems all themother sites focus on spinal cord injuries or back type pain, which thank the lord I don't have. :)

I take 1800 mgs of gabapentin, I switched to that from 300mgs of Lyrica for the nerve pain. They both work, but the Lyrica had sexual side effects and lately they think the gabapentin is clouding my brain, making me have ADHD. So they started lowering it to clear my mind a bit. The nerve pain comes back a little on the lower dose, but the groin and abdominal pain never really go away.

For the past 5 years I have been on every pain killer there is I think. I gave the pain pills a chance, some worked briefly but then like you said I became resistant and they starting upping the dose. Then changed it to another pain killer and the cycle repeats. I think I am on the last one, tramadol. After "ramping'" the dosage i take 100 msg every 4 to 6 hours and after a few months it seems it just doesn't do it anymore either.

I know that it is ok to be on pain pills, my doctor has also reassured me that for those of us with real chronic pain it is ok. But I don't like how I feel while taking them. My counselor says it's a stigma in my own mind but for me it causes depression, fatigue, and more. I want an active life back before I die and it feels that I won't get it because it will be always wait I need to drug myself before I can play with the grandkids. :(

The urologist has a "solution" that is 50/50 for success. If I can get to a pm doctor, I worry that I will be starting the drug cycle all over and after 5 years of pill after pill after pill I am just all piled out. I did look at the other options like trigger point injections, but if they don't last then it's another 200+ mile trip to try something else or get another injection. Argggg. If I could move to a larger city it probably would not be so bad, but driving and risking the doctor being out of the office on an emergency is the pits.

I have resistant essential hypertension too, so I feel your pain there as well. After the rounds of hypertensive drugs they tried clonidine patches which finally had an impact. .3 and .1 mg patches got it down to 140/90 from 180/119 so they discovered there is a metabolism issue which may be why the oral pain pills don't always work too. They put me on prozasin for night terrors due to PTSD and that helped lower my bp a little more too, but the creep back up has already started. Not back to walking stroke yet, but at the rate I am going in the next 6-8 months. :(

have you ever reviewed the website epainassist? In your opinion is their information reliable? Up until they said "cut off a testicle" I thought pills were the only option out there so outside of pain pills it is all new and foreign to me.

Thank you for taking the time to answer me. Time is valuable and it ticks away so fast. :(
Posted 10/12/2016 4:01 AM (GMT 0)
Honestly, I would not look at surgical resection of one testacal as a last resort.

I had pituitary condition where my pituitary gland was sending out excessively high levels of FSH (follicle stimulating hormone). Follicle stimulating hormone was constantly bombarding my ovary, analogous to a constantly ringing doorbell. I had a surgical resection of my ovary and fallopian tube. The pain relief after surgery was immediate.

The point being . . . chronic pain of the reproductive organs is often on a higher scale than other body parts due to the extra sensory nerve endings.

I was only sorry that I did not agree to the surgical resection of my ovary at an earlier time.

I have avascular necrosis of both hips and both jaws due to prolonged use of glucocorticosteroids. The bone of my hips and jaws is dying due to lack of blood supply. I am on a narcotic "cocktail" of a Fentanyl patch and oral dilaudid.

I am not thrilled at taking oral narcotic medication, especially given the social environment and War on Drugs through the prism of the DEA and NIH. But in order for me to have any capability to stand and walk, I rely on a daily narcotic regimen.

I do not discuss my use of narcotics with anyone outside of my immediate family (mother and brother). There is no need for anyone else to know.

I have had to set aside my own prejudices that I may have had about narcotic use. Without use of a narcotic, I would not be able to walk. Without use of a narcotic, I would be focus solely on the discomforts of my body. What is the benefit of my being in misery?

I will be on narcotics for the remainder of my life. The option of a hip replacement is not available to me due to extreme osteoporosis (also a result of corticosteroid use).

For me, narcotics make my life bearable. I am grateful for them.

When my pain is at its highest, it is often that the only thing that I can think of is that I desperately want a measure of pain relief. I would give almost anything for a measure of pain relief.

I, too, am considering the placement of an intrathecal pain pump for the osteonecrosis bone pain. I am undecided at this point. So I will be curious to see how your decision making plays out.

Bottom Line: Living in chronic pain changes the essence of who you are.
I have lived with chronic pain long enough to see relief of pain - even partial relief of pain - as a gift of paramount value. There is no shame in seeking relief of unmitigating pain.

I hope that you can find a meaningful degree of pain relief. You deserve better.
- Karen -
Posted 10/12/2016 1:49 PM (GMT 0)
Hi, cwe,

I also take gab. I have been taking it for about 5 yrs off and on. Currently I'm taking 1800 mg a day. I've read you can "safely" take up to 2500. I had one dr give me 2800mg a day (he was a quack). After 2500 it stops working because your body just won't absorb it.
I have a love hate relationship with it. I've noticed it causes memory loss on its own. I have a crazy cocktail now but I used to only take gab. And norco 3 10mg a day and I noticed the fog. I also too lyrica which was not good for me at all. Sexual issues, depression, and migraines like crazy.
I would go to a specialist, the drive would be worth it. I'm in a similar situation where surgery is 50/50 at possible pain relief etc. I hope you are able to find a solution.
Jenn
Posted 10/12/2016 4:03 PM (GMT 0)
CWE, I tried looking up the site you spoke of & could not find it. As far as believing whats on the net, no I do not. I like to say Dr Google is never right, lol. The problem with so much out there it is incorrect & not reliable information. Trying to find stuff out there with this in mind just creates so much confusion & even anxiety for people. If I need info I usually go to the Mayo Clinics website or one of the major university's site. By doing that I know I am getting correct info.

Since you have 5 years of trying narcotics under your belt did at any time your dr ever put you on an ER release pain meds with something for BT pain? Chronic pain patients generally get better relief being on an extended release pain med. Of course I realize also that you would like to not take pain meds. When relying on instant release pain meds a lot of the time you just chase your pain waiting until its time to take another pill. If your problems are all nerve pain related oral narcotics have little effect on that type of pain.

As far as a pain pump goes you would have to be under the care of a pain mgt dr to handle the refills of the pump. They have all of the equipment to make any changes needed with the pump. This is not something a GP can handle. One of our mods here got a pump & he travels from Ky to Indiana to a pain mgt dr that takes care of his pump. Pain mgt is nonexistent in that state. Very much worth the drive for him.

All I can say is explore your options very carefully & decide what you feel is right for you. If it comes down to having surgery, by all means get a 2nd opinion or even a third opinion.

Keep us posted on how you are doing.
Posted 10/12/2016 5:16 PM (GMT 0)
Thank you Jenn and Karen. I very much appreciate your kind words and support. I have been on er meds, oxy only. So I really think the pharmaceutical company could make a ton of cash by mixing it with a really good laxative because it would save me the trouble of taking them separately. :(

I am trying to get back to my GP and see if she can recommend a pain management doctor to talk to. She is all too aware of my aversion to pills, I get lectured frequently about my phobia of addiction and even knowing she is right I still struggle. Her first recommendation is the orchidectomy just to get it over with, but I like having options and statistics.

Susie thank you again too. The website is www.epainassist.com. It a huge site but not too bad navigating. They were going to send me to the mayo in Arizona for my heart, but then realized I don't have one.... actually my insurance refused to cover it so I had a few caths, and stents, etc. from regional cardiologists. But the idea of such a concentrated care facility to bang the problem out and get you on your way is great.

I will post updates as soon as I get to talk to my GP and the urologist or PM DR.

thank you all again, you have been a god send. :)
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