Hi Dr. Towfigh and Dr. Earle. My name is Michael and I live in Massachusetts. I'm 5'6" and weigh about 140 pounds. I had Open Right Inguinal Hernia Surgery at the Mass General Hospital in Boston on October 16th, 2015, and I have been in pain ever since.
I have been to so many doctors here in Boston the last 10 months, and I have gotten no where with them. More then half I don't think believe me. I just know something it wrong. I have been trying my best to find out what is wrong and if I can be helped in any way, or if I just have to live with the pain for the rest of my life.
It took me this long to find you Dr. Towfigh. I called your office twice last week, since I decided to fly out there to see you. Obviously having a possible solution to the pain easing up would be a dream come true, but at this point......I would just be really happy to finally know what is causing it.
I asked a lot of questions, and learned that you would probably order some scans. I was pretty surprised because pretty much almost every time I've seen a doctor here, I have asked "Is there any sort of scan that might show something, anything at all?" And they have all said no. I asked is there any way to get an idea of what scan(s) you would possibly order. For the main reason my insurance would only over 80% of the costs for them out there, and they would be free here. Plus already having them ready for you would be more convenient for us both I would think. I learned about this forum and got really happy to learn that you are nice enough to check it when you have time. I got even more happy when I actually noticed that there is a doctor that is in Massachusetts, Dr Earle checks this forum sometimes too. I am not sure if he treats/sees patients for pain after Hernia surgery's or not though, (If not, do you know of anyone in Massachusetts that does?) I am actually planning on calling his office tomorrow and asking them, and if so, making an appointment with him first to see if he has any idea what is going on with me. Maybe he also would know some possible scans to order? I don't know. I know it probably would be hard for you to even say what scans might show something without seeing me in person. I have only had one type of scan, and it was a Ultrasound of my scrotum, when I went to the Emergency room back in Jan because it was so bad. They thought it was a blood flow problem. (Test came out normal)
I am going to post a Facts/List of my symptoms and pain. Followed by some of my story after. Which I'll kind of start to ramble and most of it probably won't help you figure out what is wrong with me. But I don't know what else to do. Ever since this has started, I remember my mother used to sometimes say (she suffered from chronic pain) "When people are in pain, they don't know what to do"
Facts/Symptoms:
Open Right Inguinal Hernia Repair Surgery on 10/16/15 with a Johnson & Johnson Proline Hernia System - Incision 2 inches (The op report says they thought it was a direct hernia, but it ended up being a indirect one)
Severe pain at the incision site, starting as soon as I woke up. (A "Soreness" type of pain) I really couldn't do anything for the first 3-4 months. Going to the supermarket was a big deal for me.
Starting from the top of the incision about 1/3rd down (little over 1/2 inch) You can see and feel the Mesh Screen sticking out of me, and this is the main spot for the incision pain but I can feel it above.
3 weeks after surgery, my right testicle started to hurt "Soreness" pain, all of the time. and also started to get larger. Also at random times during the day, get a "shooting" pain from the incision, down to where my testicle is.
Have seen many doctors.Out of them, 2 different Urologist say my spermatic chord is "slightly" inflamed. And also my epididymis is 4-5 millimeters larger (I thought and feel like it is some sort of lump, but they said no) and in this enlarged area of the epididymisi s sore to to touch.
My right pelvic bone and hip sometimes gets a feeling like a "banged" feeling. Like if I ran as fast as I could toward a brick wall and slammed the bone into it...is the best way I can describe it.
Both where the screen is, and testicle always hurt, but things that make them worse (besides touching them, which does) that I have noticed that can't be a coincidence are:
Testicle: If I get excited (erection) and it goes away right away by itself 1-2 minutes later, and about 10-15 minutes after that the testicle pain will get a lot worse. And if I were to ejaculate, it will get A LOT worse then if I did not.
Incision/Screen: If I eat (not even overeat, but the more the worse) It starts bothering me a lot more, especially when I am sitting up, in a driving type of position.
Things that make it better:
Testicle: Nothing makes it better that I have discovered so far
Incision: Lidocaine ointment actually helps a little bit. and I have had 1 shot of lidocaine and that helped a bit too. But didn't help with the testicle.
Weeks/months would go by and I'd start to feel a little better. But all of a sudden it is like someone hits a "rewind" button, and im back how I felt months ago. Overall I am definitely a lot better then I was. It started calming down in the begining of June I am lucky enough to say. But from October to May were a so awful. I still have pain just not as bad as then . Im afraid something is wrong with the mesh that will cause me problems later on down the road. I wish there was a way to know. But then:
NEW PAINS THAT JUST STARTED 1 MONTH AGO!!!::::::
About a month ago, this new pains started that I have never had before. It is a "Burning" pain. It feels like I'm on fire. And its not just where the incision is. Its on the side of my thigh, lower back, butt, front of my leg. It doesn't go down too too far though. Maybe like 1 foot or so, but its all around.
I have no idea if this is nerve pain, something is wrong with my spermatic cord, something is wrong with the mesh (I feel like it is just ....in wrong, but how could i know
![:(]( ":(")
(maybe all of the above) This whole epididymis thing is weird. I have been reading for hours about peoples problems and no one has mentioned a swollen/enlarged epididymis that is sore and hurts to the touch.(I swear it gets bigger when the pain starts after I get excited)
Sorry I am making this way too long. A wise man once told me, "Doctors just want to hear the facts!, dont start telling them a story, or you'll start to lose them" I don't want to lose you!!! Ahhh
So from what I explained, do you think any sort of scan would show anything that is wrong? Also I read that scans can shrink the mesh itself, and my mesh is the kind that can shrink from the heat? I don't know...I'm sure you do.
I read something recently on another forum about this Ultrasound, which I'll quote:
"The test was called a “Musculo-skeletal ultrasound” which was not of the testicles but focused on the landmark anatomy of the inguinal ligament, femoral canal, inguinal canal with content of spermatic cord or round ligament, inferior epigastric vessels, conjoint tendon, deep and superficial inguinal rings. Under billing, it shows as Code # 76705 and is called “Ultrasound of Abdomen” for some reason. However, I would make sure that your physician uses the terminology “Musculo-skeletal ultrasound of the inguinal area with Valsalva.” This will ensure that even a retracted hernia will be discovered due to the straining and the way that makes a hernia “pop out” or show other issues. In your case it would help at revealing any recurrence."
Or is that only good for detecting a Hernia?
I'll start some of the long story, and I will being a lot of details out (Yes I am leaving out details and it is still this long) If you have any questions about anything please ask. I might of left something out that I didn't think was important, but it would be important to you to know.
Around June 2015, I started getting "a strange feeling" on the right side of my groin and my right testicle. It was just that, it wasn't even a painful feeling at all. When I felt it, was more like "What the heck is that" At first it didn't happen often at all. A few weeks went by and it started happening 2-3 times a day so I figured it was time to make a appointment with my Primary Care Doctor.
He examined me and didn't catch it at first (I didn't know what he was checking for at a time was a Hernia) On the 2nd or 3rd attempt he said "I think you might have a Hernia" if you do it is very small. I had heard of them obviously, but I didn't know much about them at all. He referred me to a General Surgeon at the Mass General Hospital in Boston.
Did a little research about Inguinal Hernia's before the appointment with the General Surgeon. Learned that people mainly get them from heavy lifting. At this time i was pretty surprised because I don't and haven't done not just any heavy lifting, not much lifting in general at all for my whole life. I was at that time and for about 12 years before a pretty active jogger though. Jogged 5-6 miles almost every day for years, so thought maybe that is how. I really don't know and I guess it doesn't matter now.
A month later I had my appointment with the General Surgeon. After a quick exam he said yup you have a Hernia. He went on to explain that it was a "easy" "routine" surgery and I should be completely healed in 2-3 weeks or so. I asked the typical questions like "What happens if I don't get surgery now" He said it'll just get worse and worse so it is better to do it now. I have had a couple of surgery's before and since he made it sound like something so casual and like it wasn't a big deal at all. I said sure lets do it, and set up an appointment for October 16th 2015. Little did I know at the time that was the day that was going to change my life.
Day of the Surgery:
Was calm as anyone could be. Since in my mind this was a easy/routine thing and from what I was told it doesn't even hurt that much.
I woke up after surgery in the most pain I have ever been in my life. I was pretty surprised and I remember asking over and over "Is it supposed to hurt this much?" I really did feel like something was wrong...But...How would I know? It's not like I've had Hernia surgery before, so what can I compare it to? All I know is that it hurt a lot more then I thought it was going to, and the chair they wanted me to sit in I couldn't because it hurt so much. They gave me some pain meds and my friend took me home shortly after.
4-5 days later I called since I was in so much pain. I wasn't sure if I was just being a wuss, or something was wrong. All I know it was unbearable where the incision was. I couldn't even wear pants. Even something brushing up against/touching it in anyway at all made it hurt so much more. So the surgeons nurse called me back, and told me to take the bandage off. This is the first time I saw it. The incision is only 2 inches long, but starting at the top going down about 1/3rd on the length of the incision, it was sticking out and extremely swollen for that first 1/3rd or so. (And still sticks out to this day, I thought it was just extra swollen at that spot, I didn't know why, I thought to myself "Maybe he cut too deep there by mistake because I'm Skinny?" But I later learned it was the mesh itself that was/is sticking out) And that part that was sticking out was the main source of my pain. I thought something was wrong for it to look like that in that one area compared to the rest, so I asked if I could come in to my follow up appointment earlier then I was supposed to.
Surgeons says oh its supposed to look like that and started to rub it really hard. "Rub it, it'll go away it's good for it!" I remember screaming when he started doing it. It caught me really off guard.
All of a sudden, about 3 weeks or so after the surgery my right testicle started hurting. (And still hurts to this day) I thought something else was wrong. So I called and went in again. He said, "Oh that's normal it'll go away in a month" I was happy and said oh ok.
It didn't go away, in fact I went to the Emergency room in Jan (3 months or so after the surgery) because the pain was so bad, I thought something was wrong. They thought it was a blood flow problem so they did a ultrasound of my scrotum but everything was normal.
Ok there is obviously a lot more doctor visits and pain but I have decided at the rate I'm going this will be a short book and I have made this post long enough so....fast forward to now.: My testicle still hurts, my leg/back/thigh etc feel like its on fire at times, and I can feel (feel as in not only by touching it, i can just feel it...inside of me, all of the time w/o touching it) this mesh sticking out of me, it just seems so wrong.
Thank you for taking the time to read this and answering anything that you can/have time to.
(maybe all of the above) This whole epididymis thing is weird. I have been reading for hours about peoples problems and no one has mentioned a swollen/enlarged epididymis that is sore and hurts to the touch.(I swear it gets bigger when the pain starts after I get excited)
I am not worried a bit and let go.
