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Adult ADD, asthma, Restless legs syndrome. Done hysterectomy, pelvic sling and cystocele surgery. Having pain. Reason?

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I had a vaginal mesh sling donethree months ago and really didn't seem to have any more pain or problems in the first four weeks than I would have expected. I did have two different infections and did two rounds of antibiotics for bladder infections, but was told that was not uncommon. But after feeling really pretty well, at the four weeks point, I started having a severe pain in two places just an inch or two on either side of my tailbone which radiated out from there on the right side and sometimes down the back of my right leg. This pain was always there in the two spots and the other areas would be worse when standing longer periods of time or sitting. Sitting for more than a few minutes was extremely painful and I would often wake up in the night with alot of pain. This all got progressively worse and I was contacting my doctor repeatedly, as I really felt like something was very wrong. He checked me at six weeks and said there was just alot of swelling but everything seemed to be doing fine. He said, in regard to the two points where the pain starts, "If you could take a drill and drill straight in from both of those points, that would be where your screws are." After taking hydrocodone several times a day for the pain and that still not taking care of it, I finally went in to his office and really was pretty desperate. I could understand this kind of pain right after surgery, but this had not started until about a month afterwards and it was getting worse all the time..and the pain medication wasn't taking care of it. I had done some reading and had begun to wonder if my pudendal nerve might be constricted or something to cause that pain. And, at that point, I had started having problems with my bowels and occassionally would have a bowel movement and not even know it was going to happen. That seemed to spur him to order an MRI with contrast, which he said would let him see the nerve and if anything was wrong. The MRI was done, though the techs messed up and even though the contrast was on the paperwork that I saw on the order, they did not do the contrast. When I saw the doctor the next day, he was extremely vague and said the report just showed swelling and if he had nicked the nerve or something it should have hurt right away, not start this far out from surgery. He also indicated he was nowhere near my rectum in the surgery so that shouldn't be the problem. Basically, he wrote it all off as due to swelling, though said it was very rare and he didn't really see people who were having this problem at this point, most had it in the beginning and then it went away in several weeks or months. Told me he couldn't tell me when pain would go away...maybe 2 months, maybe 6 months, he didn't know. He prescribed gabapentin and it did help the pain some, but messed with my head so much I was not able to continue taking the dosage (300 mg 3x per day) he prescribed. I am unable to take any higher dose because it left me doing things and not knowing about it or forgetting everything and not being able to focus on normal activities and totally unsure on my feet. Even at 200 mg 3 x per day, it was too much, I am now on only 100 mg 3 x per day with still a bit of those same symptoms. It probably still helps the pain somewhat, but not much. Two wks ago, he referred me to an orthopedic doctor, though I questioned what he might be able to do for me. His answer was that I had to be in a very 'contortionistic position' during surgery and it might have messed something up from that. I saw the orthopedist and he just scratched his head at why I was there. Said he does joints, not anything at all like the problems I am experiencing. He suggested I go to a general surgeon or have my doctor order more tests to see what was going on. He did indicate 'the clock is ticking on your scar tissue, which can be a real problem, so I agree that you shouldn't mess around too long." When I went back to my obgyn/surgeon, I was ready with questions from research I had done. I told him my biggest fear is that we will do the 'waiting game' for it to clear up on it's own, maybe being six months or more (so he said), which in the meantime will be some of the worst pain I've ever had in my life, and it will be no better then...then I will again have to go about finding out what the real reason for all the pain is and work towards a remedy then. He said he wanted me to know he was commited to making me pain free and could do several things....1. Refer me to a neurologist for a nerve workup, 2. Refer me to the kind of neurologist who works with people who have had this specific surgery and are more familiar with it, 3. Refer me for a second option with another doctor who does this kind of surgery. I asked if physical therapy could help and he said maybe swimming would and sent me for three weeks of it to see. I started it last week and it has actually made the pain worse. The therapist said if there is no improvement after two more sessions, then therapy is not an answer. I asked about taking a round of steroids since he said it was due to swelling and he agreed and put me on a six day pack, which is am now done with. At the end of our visit, we agreed that I would see how the steroid and physical therapy work first and then would decide if I wanted to go to another of the doctors he suggested. He switched my pain medication for night to oxycodine. I do not take any pain medication during the day as it makes it too hard for me to work my part time job. The one and only reason I am still working when the pain is so bad is because that is how I have medical insurance. I have burned up all my sick and vacation pay already so I must continue to work 30 hrs a week and be able to function okay while I"m there. Today, after talking with the physical therapist again, I called my doctor back and asked that they go ahead and refer me to the neurologist for the nerve study. I got a call back from the doctor and he said he would like to wait until I came back next week, after the two more physical therapy sessions, and then he would like to refer me to a 'pain control' doctor. My response was that I was still interested in finding out WHY I am having the pain before we settle on just having the pain managed for longer term. He said he now just thinks it is from the screws that I am having the pain since the pain originates from where he said the screws were put into the ligaments and that this doctor is not a pain management doctor, he is a pain control there a difference between the two? He said he specializes in injections and trigger points, etc to help get me pain free, not to control the pain I have. I am still confused about the difference. I will see my doctor on Tuesday next week, but I think I'm about worn out about it with him. Isn't finding out the origin important since it started after my surgery? First he said it was the swelling, now it is the screws, what is next? How do they know how to treat it if they don't know whether or not it is a nerve constricted, something with the screw placement, swelling, or whatever? Wouldn't the treatment be different with different causes? Also, I think I would like to see now the neurologist who specializes in this type of problem and familiar with this type of surgery. The name was different than just a you know what type of neurologist that would be, what speciality? I would like your opinion on whether or not I should be pushing for a reason for the pain in the first place or just go on to the next option for treatment since I've had no let up on pain so far at all and it is very debilitating for my life. I hate taking pain medications or the gabapentin or anything else that alters your thinking process at all. Thank you.
Posted Mon, 2 Sep 2013 in Women's Health
Answered by Dr. Kulsoom Qureshi 3 hours later
Brief Answer:
A brief opinion on how to deal with this situation

Detailed Answer:
Thanks for sharing your painful story to us.
Nobody likes complications & taking lifelong medicine specially pain killers, but sometimes we have to do what we don't want due to some unexpected situation or outcome.
I would like to give my opinion about the questions you have asked.
Pain management is a branch of medicine which aims to ease the suffering of people & to improve the quality of life of those people who are living with pain, through a multidisciplinary approach. I think your doctor mean to say that the said doctor is just a pain control doctor i.e. he can give medicine to control pain to a bearable extent but he is not a part of the above pain management team, which has to include multiple medical specialities.
I think your decision to see a neurologist ( neuro physician specifically) is right as they are the experts who can locate the origin of pain from your symptoms & through a thorough physical examination. The doctor may recommend some tests if he/she is not sure.
Once a definite cause is in hand specific treatment can be offered to you.
Wish you best of luck & good health.
Take care.
Above answer was peer-reviewed by
Follow-up: Adult ADD, asthma, Restless legs syndrome. Done hysterectomy, pelvic sling and cystocele surgery. Having pain. Reason? 2 hours later
Thank you for your response so quickly. I realized that I forgot to say that when I indicated shouldn't I be going to a doctor who could pinpoint what the actual cause of the pain was before going to a doctor to have the pain controlled, he said I was confusing a pain management doctor and a pain control doctor in the sense that the pain control doctor he would be sending me to could do injections into the area where the pain originates, he could do pressure point injections, etc, not just work with you on the medication itself. I'm sorry I forgot that part (typical of me at the moment!). That, to me, still would be treating before knowing what the exact problem was.....isn't it? Does this change your recommendation of seeing the neurologist first? And is there actually a specific kind of neurologist that works in the area where my pain is coming from, as he seemed to mention? If I am going to have chronic pain for long term, I understand I may be on pain medications, etc. during that time...I just feel as though the absolute reason for the pain itself hasn't yet been determined and I don't want to miss something that could be done because I"m just treating pain and not being more pro-active. Thank you.
Answered by Dr. Kulsoom Qureshi 6 hours later
Brief Answer:
Neuro-physician is the specialist you should see!

Detailed Answer:
You are welcome here with all your questions & doubts.
I have just shared with you my opinion regarding the difference between Pain management team & the so-called pain control doctor. In practice, these terms overlap very often. Your doctor may be right in the sense that the pain control doctor works in a specific area only & cannot deal with the "whole thing" or underlying problem.
You actually provided a good account of your story & it was quite clear.
The neurologist, I think you must see is a " Neurophysician" & not the other variety called "Neurosurgeon". The doctor may refer you to the other speciality if there is any need.
Hope I am clear this time. Please write back if you want to discuss this further.
Best wishes.
Above answer was peer-reviewed by
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