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Pain Diary
I’m a 33 year old male. In January of 2015, I begin suffering chronic testicular pain as a result of a previous epididymal infection. In April of 2015, I underwent a spermatic cord stripping surgery in an attempt to treat the problem. This surgery diminished the testicular pain, but left me with something far worse: chronic burning pain on my scrotal skin. I have suffered with this everyday for the past year, and it has taken my entire life away. I underwent a laparoscopic genitofemoral neurectomy in February and an orchiectomy in March of this year to year to try and stop the pain, but for some reason I continue to suffer. I have decided to begin writing a pain diary in this thread. It may help me to get my thoughts out and reduce how lonely I feel everyday. Here goes. Hope everyone doesn’t mind.
Thursday, March 31
Woke up 9:00am this morning. Today was an off-day from work, thankfully. I have somehow managed to keep my job as a financial counselor so far, due to my employer being extremely lenient and understanding while I have been going through this. I am not sure how much longer this will last, though. I felt OK upon waking up, and decided to sit in a hot bath. Within a few minutes, the burning on my scrotal skin started, as it does every single day. I took 800mg Gabapentin and had some coffee. The Gabapentin doesn’t help much, but I take 2400mg daily anyway.
Went to the gym around 1pm. In spite of the pain, i try and remain somewhat active. Unfortunately i didnt get much working out done, as the scrotal skin pain was particularly overwhelming today. I took 10mg of percocet upon leaving the gym. Within about 20 minutes, the pain had lessened to a bearable level.
Went to Mcdonalds around 9:00pm. I used to love eating healthy, but I don’t care much about that these days. Took another 10mg of percocet prior to eating. This controlled the pain and I was able to have a nice meal.
Heading home now, will take a shower and try to relax and watch some TV. These days I’m able to sleep pretty well as long as I take another 10mg of percocet prior to bed. Yes, I know it seems I am hooked on pain killers. I promise I am not. I could stop at any time, if I could just get whatever is causing this horrible pain fixed.
Hopefully I can relax a bit tonight. Tomorrow will be another struggle. Will write more then.
Goodnight, diary.
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46 Replies
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Pain Diary
All excellent suggestions.
Patients should advocate for their care. In fact, insurers are more likely to listen to patients than doctors. Yes, it’s true!
So make a big stink about your situation. Have your doctor do a primary and secondary peer review. Write letters to your congressman, the Insurance Commissioner for your state, and whichever congressman sits on that committee. Write public reviews. Better business bureau. Yelp. Whatever it takes.
It is horrible that pain control is considered not indicated. It’s just not true.
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Pain Diary
I am also in the same position, have also been diagnosed with CRPS and also had my DRG surgery denied this week. Here’s what my insurance gave as the reason (I am not making this up!): “Your request tells us you have had back pain (sic) for a long time. Pain can come from both the body and the mind. We need to know that you have seen a psychologist who has determined that your pain is not in your mind”(…etc etc). I am not sure the DRG stimulator is the way I want to go yet, but the letter was very offensive. I got straight on the phone (the inevitable wait just got me madder) and gave the poor gal in the first stage of the appeal an unequivocal piece of my mind. I am demanding a rewritten letter with the CORRECT pain location (doesn’t the doctor read the person’s medical history???) and an apology for the insults and also for the ignorance exhibited by the MD reviewing this. All pain is a perception from the mind,I told the poor gal (who was very kind and professional and said not to worry it was being appealed on Tuesday by my doctor anyway) and how could a psychologist ever say it WASN’T!!! I was told a doctor or nurse would try to call back in an hour (just before Labor Day, so I wasn’t too hopeful, and of course they didn’t call), but I intend to stick to my principles here. I want my record squeaky clean, for many reasons, not the least of which throughtout this now 3 year nightmare I have even restrained myself from crying in doctors’ office for fear someone might see me as anything other than someone who deserves the best medical care there is to give. Of course I cried after I got off the phone, partly because I felt so bad for emoting so someone who has nothing whatsoever to do with this letter 🙁 , or my hernia surgery-related problem for that matter, but also because I have been a customer for many years and I pay insurance dues, and I continue to work to keep my insurance, and here they are cheaping the process for deciding on procedures out to someone who doesn’t even get the correct body part. Wow, keeping fighting for your rights! I intend to do so too! Can your doctor appeal in a peer-to-peer meeting? That’s what mine is doing
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Pain Diary
To Tomlinson and Paul
What I would do if I were in your shoes.
1. Find out what exactly can relieve the pain. Surgery? Medication? Therapy?
2. Find out the correct surgeon by talking to people – anyone and everyone who knows and who can talk. And find *THAT* surgeon who can fix and talk to him, his patients and everyone around to see if he is THAT surgeon you need.
3. Find the costs in total and add 20% for sundries
4. Report matter to local TV, CNN and everywhere on how you were cheated, how your insurance is denying treatment and why your pain was not going away and how you are right in the middle of painful hell. I will even release a you tube video with tears rolling down my face.
5. Get solid proof before going to surgery table that this surgeon can confirm my pain *and* relieve me of it – at least to a witness or on audio or someway to produce it in court.
6. Once I found the surgeon that could fix and the costs, if I need money badly I will go to crowd funding websites, bitterly write these details and ask for funding from public. This step I will do along with (4) above. People are very generous and will support.
7. Continue to push buttons till you get relief – complain bitterly to the FDA, medical communities, local news papers, write long letters to insurance companies and even put a CC to public.
8. Washington Post has a column that does the “solved medical mysteries” series. I will email her and talk to the post too to find more details.Push every button I have in my brain as idea and then pray to God. In one sentence “I will go all out.”
Paul – if you are UK you have to find a different news paper I think but Washington post is most likely to accept your case too if you get relief.
BTW people are using crowd funding for going to other countries for volunteering and they are funded well. I am sure people will fund the surgery if it is that prohibitively expensive. But make sure you find **THAT*** correct surgeon to get you fixed. Once you go through the surgery, you cannot complain a second time. Remember that point.
Have I done this before? I did this for my Microwave that was dead. It may seem trivial but it worked for me.
An Over the Range Microwave was purchased in Menards (home depo like shop) It died after 10 months abruptly. Calling the shop revealed that counter top microwaves can be returned but OTRs are NOT returnable. Please contact the manufacturer. Manufacturer has 800 number that nobody answers and an email that nobody responds. So I email again and again and now put CC to the local TV (fox TV) lady who investigates such things. I found that from watching Fox TV. So now that the TV is in, for info, the email has been replied by the manufacturer. Sorry that the microwave died, we can send a repairman. He comes and says he cannot fix. Great, now email back to the guy. Okie dokie we will give the money back and he sends me a check. To my horror the check bounced at bank and now bank charges me $35 for bounced check. Excellent. Now I go back to Fox TV lady and then this guy at Microwave manufacturer with an additional complaint. Oh, did it bounce? if you give me your bank account I will transfer money directly to your bank. Ha ha not so fast. I never give bank account to 800 numbers and faceless guys who send bouncing checks. I email him now – send me money order and include the bounce fee or I am going back to Fox TV (did I say unwanted publicity?). By evening when I go home I have the money order and the case is closed. Total time to solve the problem – FOUR months. Cost of Microwave? $99.
No, I am not saying that IH surgery is this easy but at least you can try. Crowd funding is no more a joke. It is very real and people really help. Also I will use Facebook, twitter and everything under the sun. If the surgeon is good one you can even arrange for a payment plan with him. Most good surgeons agree for a payment plan. Even hospitals do. Nothing is frozen in cryogenic temperatures.
BTW this is what “I will do” but please feel free to trash this idea since you may or may not have interest in this kind. I wish you all the best.
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Pain Diary
I am in a similar situation, however i lost a testicle through misdiagnosis of testicular cancer and have chronic pain in my groin and testicle on the other side. Its like a constant reminder of the trauma ive been through. Im having surgery next month to see if heres a hernia but im really worried that they’re not gonna find anything and it’ll be classed as nerve damage etc. You need to know ur not alone in this. I was 28 and a very active bodybuilder in the best shape of my life. Then the pain started and its cost me a testicle, my confidence, my mental health and almost 3 years of my life. You are not alone my friend. The only way ive survived so far is to coach myself into seeing this whole saga as a challenge i must overcome. If u can make it through this u can make it through anything. I turned to drugs in the first year, cocaine and ecstasy to numb the pain and somehow got through it. Im not sure if i can give my personal email on here but if u want to contact me through that I’ll try and send it.
Cheers
Paul
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Pain Diary
Just an update. As I may have mentioned before, I have been diagnosed with Complex Regional Pain Syndrome/Reflex Sympathetic Dystrophy in the pelvic region secondary to the nerve damage caused by my spermatic cord denervation surgery.
My pain management doctor has recommended a Dorsal Root Ganglion Stimulator, as this is the last known surgical procedure that could possibly help me.
Unfortunately, this procedure has been denied by my HMO as being “not medically necessary.” The “physician reviewer” actually had the gall to state that my pain “is not severe enough to warrant this procedure.”
Words cannot express how incredibly soulless and stupid I find this statement to be. My groin feels like it’s perpetually being stabbed by hot pokers and my skin feels as though it’s being burned in acid.
I am so thoroughly disgusted with the medical profession. It was a doctor who did this to me, and it is clear to me now that many doctors are not in the medical profession to help others, but rather to make as much money and kill as many innocent people as possible.
There is no help out there for me. No one cares about what has been done to me. It makes me sick to my stomach.
I realize that there are good doctors out there who truly care for others. Unfortunately, they are overshadowed by soulless, uncompassionate monsters like the ones who continue to willfully hurt me.
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Pain Diary
This incurable pain caused by the denervation is so horribly agonizing. The urologist assured me that the procedure was completely safe and that nothing could go wrong. Then he brushed my postoperative pain off as anxiety and blocked me from contacting him.
It disgusts me that monsters like this are disguised as medical professionals. My quality of life was stolen for no reason.
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Pain Diary
Yes. There is a new treatment as you mentioned.
RSD is more common in the extremities but for sure can be seen related to the groin.
Sounds like you are in good hands and moving in the right direction.
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Pain Diary
Thanks Dr. My pain management specialist believes that this is Reflex Sympathetic Dystrophy caused by cautery damage to the genitofemoral nerve. He believes this is why the neurectomies have not worked in curing my pain. What is your feeling on this diagnosis? From what I’ve read, RSD usually affects a limb and not the groin/pelvis.
My pain doc wants to implant a Dorsal Root Ganglion stimulator in me. Apparently these were just recently approved and have shown efficacy in helping patients with intractable groin pain from nerve damage.
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Pain Diary
The number I was told by one of our pain docs is 9months. That is, if pain is left untreated for 9months, that increases your chances at centralization and reduces your risk of cure.
That said, these are all risks. They are not 100%. For sure I have patients with much longer chronic pain without centralization of pain and who have been cured.
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Pain Diary
Dr. Towfigh:
I was reading some research by renowned Pain Management Specialist Dr. Forest Tennant regarding centralized pain. He was saying that the time limit to prevent pain from peripheral nerve injury from becoming centralized is 6-weeks. His belief is that if the nerve injury is not cured within this time frame, the pain will centralize and then no longer be curable.
I know that the research you and other Doctors have done on post-herniorrhaphy neuralgia usually states that patients should wait 6-months to 1-year prior to reoperation to resect the damaged nerves. I just wanted to mention what I found from Dr. Tennant, as it may be a basis for moving up the 6-month to 1-year timeline to prevent pain from centralizing as it obviously has in my case.
That said, I know that I am kind of an oddball, because it appears that most of the patients you have helped recover from post-herniorrhaphy nerve damage have not had the centralization problem. I guess I am just one of the unlucky ones 🙁
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Pain Diary
21tomlinson, hang in there. I know you’re having a tough time right now. If your pain right now is severe and causing serious despair, you should go to the ER – they can help and offer immediate support.
Maybe today you can leave a voicemail at some of the office clinics of the providers offered here. Otherwise maybe call them first thing tomorrow morning and arrange an appointment for ASAP.
I would highly encourage you to go to a new pain management specialist if the current treatment protocol is not working. There are many things to try to manage pain and to help. To me it sounds very clear that your current provider is not understanding the severity of your condition, and to me that says you need to find someone who does understand and is willing to try new things.
Don’t give up, don’t feel hopeless, you can fight through this. Keep trying things until you find something that helps.
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Pain Diary
I’m crying right now. I don’t want to suffer anymore. I just want to live but this horrible pain won’t let me. I just want it to end.
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Pain Diary
Again, surgery is not your friend in these situations. There are great Pain Management specialists near you to handle centralization of pain. It does not involve surgery. Talk to your own Pain specialist and follow their lead if they’re comfortable treating that problem. You’re not treating a single neuralgia anymore. Those who I work with and have had great results are:
Dr Samimi, Lalani group
Dr Payam Vahedifar
Dr Tim Davis -
Pain Diary
Believe me, I do not want to die. I had a career. I was just about to being my masters degree. I worked out every morning. I absolutely loved life. I don’t have depression. I have severe suffering. And there is no longer any way out other than suicide or cutting off the lower half of my body. I’d gladly do that just to keep living.
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Pain Diary
I’m sorry you feel that way. It must be awful. If you are really thinking of suicide, you should call 911 for help, or go to an ER. Depression can drive these thoughts, and many times they can be successfully treated, and people feel normal again.
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Pain Diary
I am tired of fighting, Doctor. I can’t keep searching for a cure that I may never find. I have searched for over a year, and I have suffered unimagineably for every day of that year. I am in so much horrific, agonizing, pain. I only see 2 choices now:
– Committing suicide
– Having a hemicorporectomy (A surgery to remove the lower half of my body.) At this point, I would do it just to live what remains of my life in comfort
I probably would not find a surgeon willing to perform such a procedure considering that I do not have a terminal illness, just pain. Plus, the cost is exhorbitant.
I don’t see any other way out.
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Pain Diary
Hypnosis therapy and meditation are also alternatives. I like to think of the “alternative” forms of medicine as keys that unlock your CNS potential to cure whatever ails you. We all have different locks, hence need different keys. Unfortunately, we have to find the key that works by trial and error. That means you should keep trying all options until you find the one that works. I believe that if you keep trying, you will in fact find the one that works, and you will get your life back.
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Pain Diary
Dr. Towfigh:
I am, but he’s not really helping. He wants to put a spinal cord stimulator in me. Dr. Chen feels that these devices are ineffective for inguinal neuralgia.
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Pain Diary
This is why it is important that you don’t jump from operation to operation.
There is treatment for centralization of pain. Are you being treated by a Pain Management Specialist?
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Pain Diary
I believe I’ve figured out what is wrong with me. I have central sensitization of pain. That’s why none of the nerve surgeries are working. The injury to my ilioinguinal and/or genitofemoral nerves caused my CNS to be in a constantly hyperactive state, and thus I will always be in pain even if the original injury is taken away. That is why I cannot get better. My body will no longer let me.
The only thing I can do now is to try and live out the rest of my days as comfortably as possible. I have a long way to go. I’m only 34, so I’ve got about 40-45 years of suffering ahead of me. Having any sort of quality of life is out of the question. I just have to try and live as comfortably as possible. My life is gone.
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