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Tailbone hip and leg pain after surgery

I am a 30 year old female. Two and a half years ago I had laparoscopy to remove a endometrioma cyst from the outside of my bladder.  My ob/gyn also removed two other tumors and cauterized these lesions in my pelvic lining between my vagina and my rectum.  Right after this surgery I noticed this sharp pain like getting stabbed with a knife in my tailbone when I went to sit down or stand up.  While sitting, it is more like the nerve throbbing of an abcess tooth.  The nerve pain would shoot up my tailbone and out through my hip bones.  At first it wasn't that bad, I just avoided sitting as much as possible.  I have been seeing a Neurologist for two years, I have had botox injections which have eliminated the knife like pain when I sat down or stood up but have done nothing for the throbbing nerve pain while sitting.  I had steroid shots but these did nothing...  Now the pain is starting to spread to my hip joints and I get pain that goes down the side of my thigh muscles.  I can feel the nerve pain shooting down my legs and my legs will spasm to the point where eventually they go numb like when your legs fall asleep.  I have days where I can't walk and the pain is so bad I want to beat my head against the wall till I knock myself out.  I don't want to take pain medicine.  The only thing I am taking right now is Topamax 25mg 4x a day.  Please help!!
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Avatar universal
Thank you for your reply.  Since my original post, I have gone to see a specialist in Pudendal Neuralgia, Dr. Stanley Antolak, in Minn. as I had identified this nerve myself the first time I went to the neurologist.  I thought I just had a pinched nerve and when I looked at the chart of nerves in his office, the Pudendal Nerve was the only one that went in the same pattern as my pain.  After going to Dr. Antolak, I was finally correctly diagnosed with Pudendal Neuralgia.  He did a series of nerve conduction tests and heat sensory threshold tests and determined that I did have Pudendal Neuralgia.  Because the Pudendal Nerve branches out after going through your abdominal muscles and attaches right where your ureter attaches to your bladder, the nerve was damaged when the cyst that was on my ureter and bladder was removed.  Also, because I had had the cyst for at least two years, although I believe it originally formed when I was pregnant w/my son; I also have permanent kidney damage.  First I went to the ER and they discovered the cyst, then they sent me to the OB GYN who had delivered both my kids who then did an ultrasound and sent me to a urologist. The urologist then sent me back to my OB GYN because even though it was on my bladder and ureter; it was a female cyst and he didn't deal w/those.  Then my OB Gyn's office sent me to DSI to have a cat scan and when I called for the results they told me there was nothing wrong w/me.  I thought it was all in my head.  So I went another ten months dealing w/urinating as much as 6 times in an hour and having kidney pain until I started having what looked like pieces of skin in my urine and my urine was very dark.  Finally, I called the urologist again and told him what my OB/Gyn office had told me and he told me he would get the results of my cat scan and call me back.  When he got the results of my cat scan he was furious!  It said right on there that I had a ureteral seal which is the same thing as having a cyst on your bladder and ureter.  The cyst was blocking my urine from entering my bladder and therefore my urine was backing up into my kidney causing me kidney damage.  He told me that I could end up on dialysis or losing a kidney and not to go back to my OB/Gyn office again.  He couldn't believe they had lied to me and told me that there was nothing wrong w/me.  Anyway, he referred me to the OB/Gyn who finally did my surgery and removed the cyst, but; unfortunately he damaged my Pudendal Nerve during the process.  I always suspected that the pain I had was from my surgery but I was so grateful to him and to the urologist, Dr. Grieco, that I didn't want to blame it on Dr. Mc Lean; the OB/Gyn that Dr. Grieco had referred me to.  I thought it was just a pinched nerve and I would go to the doctor a couple times and be right back to normal. Never did I imagine that I would end up w/permanent nerve damage from the waist down and end up in excrutiating pain every day.  I even called Dr. Mc Lean's office and told him that I thought something had gone wrong w/my surgery as I still had excrutiating pain in my abdomen and back over two weeks after my surgery.  The pain was soo bad that it was causing me to projectile vomit.  When I spoke w/Dr. Mc Lean's partner he told me that if I had an infection it would have come on before then and told me I just had a stomach flu.  Needless to say, I should have listened to my own instincts because not only had something gone wrong w/the surgery but I was also right about what nerve was damaged and I tried to tell this to my neurologist that I went to for three yrs. but he kept ignoring me.  I even brought in info. I had printed off the internet showing that I had all the symptoms of Pudendal Neuralgia but he wouldn't even look at it.  It took me switching to another neurologist in the same group, who actually looked at the info. I brought in because he said himself that I was a puzzle. He encouraged me to see the specialist in Minn. who finally diagnosed me w/what I had been trying to tell my other doctor all along what I thought I had.  Because of my first neurologist ignoring me the nerve damage spread from my tailbone, to my sacrum, to my hips, down my legs, to my feet, and finally to my groin area.  The injections I received in Minn. reversed the numbness in my groin area since I had only had that a short time, but the rest of the damage had been going on so long it was permanent.  Long story short, listen to instincts and don't let these doctors intimidate you.  You know your body better than anyone!!  Good Luck!!
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Avatar universal
I too have had similar pains since I had a couple of pelvic operations. First the pain was more or less in the left lower quadrant of the pelvis as well as the low back and left hip area. Then it went down my leg and now it is the entire left side of my body. I have been going through physical therapy and have seen neurologists, orthopedists, physiatrists and everyone in between. Now I'm in the process of trying to find a panel of doctors who might be able to connect the dots. It is very hard for me to sit and my left leg feels like it is dying. I firmly believe that it has something to do with nerves and the vasculature in the pelvis. My understanding is that the ilio hypogastric, ilio inguinal and pudental nerves can be damaged by any type of abdominal operations. Even though yours was a laparoscopic procedure I don't know if that could have prevented the nerves from being damaged. I have to share that several doctors have tried to put me on medication for depression. I really believe that when doctors can't find the real cause of a problem they look to take the easiest route. So, be aware of it and don't let them intimidate you into thinking that it is all in your head. I know how I feel and I know I'm in pain just like I'm sure you know how the pain affects you. Please try to go to a good University Hospital with all your papers and I suggest that you put together on one page (since even the best doctors can have a very small attention span) in a chronological order all that you have gone through and your symptoms and all your test results. At this time I'm thinking of going to a neurologist to see if they can give me some nerve blocks to see if they can identify one of the nerves that I mentioned before. I hope that you find someone who will really listen and work with you to help you. I really hope that you have better luck than me. If I find out anything else I will write back. Take care.
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