Some excepts of my last blog entry:
Before my surgery, I told my surgeon (if you recall from that entry) that I had pain on my right side, too,and he pretty much told me that he wouldn't do anything about it...I was told that this pain was referred pain from the left side tumor and it would go away after surgery.
IT HAS NOT.
In fact the pain on my right side is worse than it has ever been before ...If I press deep down on my skin, the muscle around my bone is VERY sensitive and it hurts to press down on it. It hurts from the top right side of my pelvic bone, across and down my groin area (sorry if that's TMI) and sometimes down my right thigh (on the front side) and SOMETIMES it extends to my right lowr back area. But it usually stays focused on that pelvic bone area!
Since i wrote that entry, I saw a new pain doctor, and as soon as I pointed to the area of pain (I happened to have been in pain when I met her- usually my pain spells are over by the time I actually SEE a doctor) and LO AND BEHOLD, I have been given an ANSWER as to what the HELL might be going on: ilioinguinal neuralgia. This type of pain comes from either trauma to the nerves in some sort of accident or.....ABDOMiNAL SURGERIES. I first remember this pain starting in April,t hough it could have started way before, I was just so focused on my lower left abdomen pain, attributing my pelvic pain to cramping....but the first memory of SEVERE pain there was April, and that day, I took 2 650 mgs of tylenol every 3-4 hrs (when it should be every 8 hrs) and the pain did NOT go away...but it makes sense: the tumor on that left nerve probably affected my right side, and well, it's certainly been worse SINCE my surgery!!
This is what different sites say about ilioinguinal neuralgia:
1- Ilioinguinal neuralgia presents as paresthesias, burning pain, and occasionally numbness over the lower abdomen that radiates into the scrotum or labia and occasionally into the inner upper thigh. The pain does not radiate below the knee. (from this site)
2. The ilio-inguinal nerve passes through the inguinal canal away from the spine in the middle of the back. It passes through the hip area and into the groin with further effect down the legs. Thus the reach of this nerve extends across a large portion of the body and is susceptible to pain in many regions. Damage to the inguinal nerve can occur from a variety of events, but most often presents after surgery in the abdominal area. (from this site)
3. Ilio-inguinal and ilio-hypogastric nerve disturbances: The ilio-inguinal and ilio-hypogastric are nerves in the pelvic cavity that can be injured by trauma such as surgery in the lower abdominal wall. Though not clearly understood, these nerve disturbances may be caused by the stretching or cutting of nerves located around the incision (cut) made during surgery. (from this site-- and check out the picture of what a person looks like when in pain- that's SO me ahha)
4-The ilioinguinal nerve originates from the first low back (lumbar) spinal nerve. This nerve wraps above the iliac crest (upper ridge of hip bone) and travels into the groin. It provides sensation to the upper inner thigh, groin, and perineum. The perineum is between the anus and scrotum in men and between the anus and vaginal (and labia) opening in women. (from this site)
5- The ilioinguinal nerve is located in the lumbar or low back area. It runs from the low back to the abdominal area. This nerve emerges from the spine at the lateral border of the psoas major muscle. The psoas major muscle begins at the first lumbar vertebrae and runs down through the abdomen and attaches on the inside of the femur, or thigh bone. It is responsible for flexion of the hip. (from this site and as a side note: where my hip connects to my thigh-- that's def. where I experience pain!
This other site talks about chronic pelvic nerve pain and goes into more detail about abdominal surgeries being a problem for this nerve.
I read somewhere, on SOME site that the point at which the pain is worst is usually the area where the nerve is damaged...it might have been on a discussion forum. I can't remember, and can't really find it, but it would explain what I said in my last entry (in the excepts above) that it hurts to press on the area of pain...
This picture I found through Google shows the EXACT area where my pain is where the yellow line goes)
This picture also gives a good idea of what part of my pelvis just hurts so badly:
back front
One remedy is a shot, which is what the first picture depicts. That's where the injection would go. But I'm not sure I want that. Not sure it's right for me since I am not in pain all day every day- it comes and goes and usually lasts 10 days. For now, I take oxycodone to help me- 1 to 2, every 4 to 6 hours depending on severity. I only take it during my pain spells...not every day. I can sense all you judgemental people regarding my using oxycodone. I won't get addicted. Don't even tell me or act like you're worried about me regarding my taking it/getting addicted- it pisses me off. You don't understand severe pain if you think my taking it will lead to addiction. End rant.
I am seeing a new OBGYN in mid January who I hope knows more about this. My other OBYGN is quite dismissive. This new one works in the same area my NF doctor does (not only at MGH, but in the same suite), so if this nerve damage IS attributed by my NF surgery, I think my NF doctor is better able to help me.
My pain doctor is not at MGH, but at least she seems to want to HELP ME! My other pain doc is a good guy but way to abrupt, and when it comes to my pain, I can't deal with an abrupt doctor...soo...I am 1) thankful to my pain psychologist for recommending this new doctor to me and that 2) the new pain doc is happy to take me as one of her new patients. She reminds me a lot of my primary care doctor- somebody who suggests REMEDIES and cares about helping me, not somebody who wants to see me for 2 minutes without really having any ideas as to what my pain is about (aka my other pain doc and my other OBYGN). My pain doc is at the same place where my primary care doctor is, so at least they can work together...i don't think it's necessary to see docs at the pain clinic at MGH.
Anyway, it's difficult to say "I'm better!" since my last surgery because ...well, I'm not! Where my tumor was removed IS 100% better, but this pelvic pain is absolutely terrible. We'll see what happens. At least it's NOT ALL IN MY HEAD. Explaining my pain to some people makes me feel like 1) people don't believe me [which i know is not always true] or 2) I am complaining about pain eVERYBODY has, so people are like 'why are you complaining about this? everybody has this! it's normal!
Damn NF.
Before my surgery, I told my surgeon (if you recall from that entry) that I had pain on my right side, too,and he pretty much told me that he wouldn't do anything about it...I was told that this pain was referred pain from the left side tumor and it would go away after surgery.
IT HAS NOT.
In fact the pain on my right side is worse than it has ever been before ...If I press deep down on my skin, the muscle around my bone is VERY sensitive and it hurts to press down on it. It hurts from the top right side of my pelvic bone, across and down my groin area (sorry if that's TMI) and sometimes down my right thigh (on the front side) and SOMETIMES it extends to my right lowr back area. But it usually stays focused on that pelvic bone area!
Since i wrote that entry, I saw a new pain doctor, and as soon as I pointed to the area of pain (I happened to have been in pain when I met her- usually my pain spells are over by the time I actually SEE a doctor) and LO AND BEHOLD, I have been given an ANSWER as to what the HELL might be going on: ilioinguinal neuralgia. This type of pain comes from either trauma to the nerves in some sort of accident or.....ABDOMiNAL SURGERIES. I first remember this pain starting in April,t hough it could have started way before, I was just so focused on my lower left abdomen pain, attributing my pelvic pain to cramping....but the first memory of SEVERE pain there was April, and that day, I took 2 650 mgs of tylenol every 3-4 hrs (when it should be every 8 hrs) and the pain did NOT go away...but it makes sense: the tumor on that left nerve probably affected my right side, and well, it's certainly been worse SINCE my surgery!!
This is what different sites say about ilioinguinal neuralgia:
1- Ilioinguinal neuralgia presents as paresthesias, burning pain, and occasionally numbness over the lower abdomen that radiates into the scrotum or labia and occasionally into the inner upper thigh. The pain does not radiate below the knee. (from this site)
2. The ilio-inguinal nerve passes through the inguinal canal away from the spine in the middle of the back. It passes through the hip area and into the groin with further effect down the legs. Thus the reach of this nerve extends across a large portion of the body and is susceptible to pain in many regions. Damage to the inguinal nerve can occur from a variety of events, but most often presents after surgery in the abdominal area. (from this site)
3. Ilio-inguinal and ilio-hypogastric nerve disturbances: The ilio-inguinal and ilio-hypogastric are nerves in the pelvic cavity that can be injured by trauma such as surgery in the lower abdominal wall. Though not clearly understood, these nerve disturbances may be caused by the stretching or cutting of nerves located around the incision (cut) made during surgery. (from this site-- and check out the picture of what a person looks like when in pain- that's SO me ahha)
4-The ilioinguinal nerve originates from the first low back (lumbar) spinal nerve. This nerve wraps above the iliac crest (upper ridge of hip bone) and travels into the groin. It provides sensation to the upper inner thigh, groin, and perineum. The perineum is between the anus and scrotum in men and between the anus and vaginal (and labia) opening in women. (from this site)
5- The ilioinguinal nerve is located in the lumbar or low back area. It runs from the low back to the abdominal area. This nerve emerges from the spine at the lateral border of the psoas major muscle. The psoas major muscle begins at the first lumbar vertebrae and runs down through the abdomen and attaches on the inside of the femur, or thigh bone. It is responsible for flexion of the hip. (from this site and as a side note: where my hip connects to my thigh-- that's def. where I experience pain!
This other site talks about chronic pelvic nerve pain and goes into more detail about abdominal surgeries being a problem for this nerve.
I read somewhere, on SOME site that the point at which the pain is worst is usually the area where the nerve is damaged...it might have been on a discussion forum. I can't remember, and can't really find it, but it would explain what I said in my last entry (in the excepts above) that it hurts to press on the area of pain...
This picture I found through Google shows the EXACT area where my pain is where the yellow line goes)
This picture also gives a good idea of what part of my pelvis just hurts so badly:
One remedy is a shot, which is what the first picture depicts. That's where the injection would go. But I'm not sure I want that. Not sure it's right for me since I am not in pain all day every day- it comes and goes and usually lasts 10 days. For now, I take oxycodone to help me- 1 to 2, every 4 to 6 hours depending on severity. I only take it during my pain spells...not every day. I can sense all you judgemental people regarding my using oxycodone. I won't get addicted. Don't even tell me or act like you're worried about me regarding my taking it/getting addicted- it pisses me off. You don't understand severe pain if you think my taking it will lead to addiction. End rant.
I am seeing a new OBGYN in mid January who I hope knows more about this. My other OBYGN is quite dismissive. This new one works in the same area my NF doctor does (not only at MGH, but in the same suite), so if this nerve damage IS attributed by my NF surgery, I think my NF doctor is better able to help me.
My pain doctor is not at MGH, but at least she seems to want to HELP ME! My other pain doc is a good guy but way to abrupt, and when it comes to my pain, I can't deal with an abrupt doctor...soo...I am 1) thankful to my pain psychologist for recommending this new doctor to me and that 2) the new pain doc is happy to take me as one of her new patients. She reminds me a lot of my primary care doctor- somebody who suggests REMEDIES and cares about helping me, not somebody who wants to see me for 2 minutes without really having any ideas as to what my pain is about (aka my other pain doc and my other OBYGN). My pain doc is at the same place where my primary care doctor is, so at least they can work together...i don't think it's necessary to see docs at the pain clinic at MGH.
Anyway, it's difficult to say "I'm better!" since my last surgery because ...well, I'm not! Where my tumor was removed IS 100% better, but this pelvic pain is absolutely terrible. We'll see what happens. At least it's NOT ALL IN MY HEAD. Explaining my pain to some people makes me feel like 1) people don't believe me [which i know is not always true] or 2) I am complaining about pain eVERYBODY has, so people are like 'why are you complaining about this? everybody has this! it's normal!
Damn NF.
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