Groin and thigh pain following radical prostatectomy

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Does anyone suffer with the same severe low back, thigh and groin pain as I have been for the past seventeen months following my radical prostatectomy. I am fine for the first twenty minutes of walking or general activity before the pains starts and increases in intensity if I don't stop.  I have had M.R.I's and scans. The spinal consultant said it is caused by a lymphocele which I have had drained once, but eurology don't think this is the cause. Can anyone offer any suggestions please. The nerve pain can get unbearable.

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  • Posted

    jim82866...welcome to the forum...you can read a bit about me by clicking on my profile...

    Following my radical Prostectomy I noticed a growing dull ache in my right groin and after about 6-8months I could actually feel lumps etc begin...

    I was still having my PSA levels being watched when I brought up my concerns,...

    I was sent off to have a PSMA Scan which was resonably new...

    It detected that my cancer had spread through the nodal system etc but an MRI or CT scan wouldn't have picked it up..??

    I have pain in my lower left back and groin almost constantly...

    Walking is really something I can do but not fast or great distances...due to bladder rather than pain...:-)

    I certainly hope I'm wrong but it sounds like you could be faced with what I am presently going through...

    What was your results last...PSA... Gleeson...Age...

     

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    • Posted

      Thank you for your quick reply. I didn't mention that my P.S.A. level is now zero having had my prostate removed and I am a young 70 yr old. I have a feeling that my severe pain problem may be caused by a Lymphocele, my stomach drains should have dried up before leaving hospital, but they didn't and so were removed this caused a build up of fluid that the spinal consultant said was being pushed against a nerve by the psoas muscle after a period of walking or general activity, the eurology consultant disputed this, but then I guess he would. So really, I guess my question is, has anyone else experienced a lymphocele and if so did it cause problems.
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    • Posted

      I had a radical prostectomy done Aug 15 2016, up until a few weeks ago i have not had any issues. Now I am experiencing dull to extreme pain in my right groin area -- the area of the vacated prostate to be more accurate. At times the pain is severe enough to stop me dead in my tracks. My surgeon indicated i had positive margins and would likely require additional treatments of some form or another. He never mentioned that I would experience this tpye of pain. My first follow up is scheduled for the end of this month
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    • Posted

      Sorry I never got back to you, I would be interested to hear if your groin pain has been sorted. I had further surgery just before Christmas to drain my Lymphocele and stitch open a permament hole to allow the fluid to drain into the pelvic cavity. Four months on and three years since my Radical Prostectomy my groin pain has finaly gone and i can walk as far as I wish.
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  • Posted

    Hi,

    If you have been diagnosed with nerve pain then you unfortunately are in a bad place as nerve pain is difficult to sort out, I've had it in my legs for several years, I've found that the best medication is

    Fentanyl coupled with mindfulness meditation, I hope that info can help you out.

    Luck to you.

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  • Posted

    I'm 68. I had a prostatectomy on September 29, 2016. One month later I started having groin and upper thigh pain. I was diagnosed with having osteitis pubis and have been given narcotics for pain relief and meloxicam for inflammation. I expected,after 10 days of taking my meds, that I would be in much better shape, but I'm still suffering from the pain every time I walk. I now walk with crutches and I'm seeing a urologist tomorrow.

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  • Posted

    Jim, I am 67 years old. I had robotic surgery on 10/31/16. One month ago I started experiencing strong pain accompanied by a burning sensation in my right groin area

    Walking does not bother me but standing sets off the intense pain and burning sensation. After my surgery my urologist ordered me t o have a PSA and an abdominal ultrasound. My PSA was 0 and the ultrasound report indicated that I had 2 lymphocelles on opposite sides of my bladder. The urologist informed me that the lymphocelles would probably disappear. I just had a second ultrsound recently and the results showed that the lymphocelles were smaller than the first time. I still have the pain. I will be seeing my urologist this week and I will definitely ask him what's going on. I will share the findings with you.ll

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    • Posted

      I look forward to hearing what 

      your urologist comes up with. The lymphocele certainly appears to have been my problem, I had  full open surgery just before Christmas to drain the lymphocele and now have a hole stitched open so that any fluid would now drain into my pelvic cavity. My urologist had never come across the cause of my severe pain before caused by the lymphocele, but finaly three years after my prostate cancer I can now walk any distance.

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    • Posted

      Hi,

      I am in the same place, had radical prostatectomy 3 weeks ago, no problems.

      Only 1 week ago started having swelling of my upper left thigh near the groin and standing or walking very short distance sets off pain through to my hip and sciatic nerve.

      Doctor said it's lymphatic liquid trapped, sucked up some and said lymphatic drainage massage should solve the issue.

      I am doing it by myself but will see a professional soon. Hope it is nothing chronic. Any experiences from anyone?

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  • Posted

    Hello,

    I am happy to find this discussion on the internet about leg pain and lymphoceles.

    I have a large Lymphocele and pain in the left hip and groin that is severe after 20 minutes or so of activity that I have been enduring for years.

    My urologist thinks the pain it could be related to the Lymphocele but had me talk to hip and back orthopedic doctors to eliminate the possibility of arthritis. I have had the other hip replaced 4 years ago. The arthritic pain presented differently than this does.

    Reading this discussion, it appears that the Lymphocele could be the source of my problem.

    My plan would be to drain the Lymphocele and then immediately, walk for 20 minutes or so before the Lymphocele regenerates to see if the pain returns.

    My urologist says it is a simple procedure to open a perineal window to provide a permanent drain.

    I would be curious to find out about anyone else's similar experiences of has any sources for more information.

    Thank you.

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    • Posted

      Hello Mark,

      I had a lymphocele as I mentioned above.

      Shortly after, I had a severe infection, possibly caused by the lymphocele.

      At any rate, doctor told me lymphocele are not a chronic thing, should be drained out with a catheter, and should not return.

      That's exactly what he did. Only in my case it was more painful due to the infection. I had it in May and the lymphocele is gone. I walk now as much as I like and the pain is gone.

      My guess is your pain is caused by the lymphocele. You shouldn't need to live with it and doctors (good ones) should know better.

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  • Posted

    Thanks for your reply.

    My Lymphocele never got infected but I have not been able to get rid of it. We did try draining with a catheter but it came back. He wants to do something laparoscopically now which he refers to as a perineal window.

    The one factor in all of this which has created so much mystery is the fact that my pain only comes after 20 minutes of so of being my feet; walking, playing tennis, working in the yard, etc..when it comes it can be severe. The pain can be totally relieved by sitting or laying down.

    Since most of the pain is in the hip and groin it could be coming from the hip joint itself which would mean a probable hip replacement. Before I do that however, I want to make sure it is not being caused by my Lymphocele. I guess it is possible that somehow after a time on my feet, the Lymphocele presses on a nerve.

    Thanks

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    • Posted

      Hello Mark,

      My pain was exactly of that same nature, hip pain that spread to the siatic nerve, after 20 min or so of walk, relieved by sitting or laying down, and was gone as soon as my lymphocele was gone.

      This is why I am suspecting it's the lymphocele causing your pain.

      How long was it before the lymphocele came back?

      Best

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  • Posted

    Thank you again for your response.

    Not sure how long it took for the Lymphocele to return. It was within a few days max.

    This forum is the only place I have heard of anyone with the same symptoms as mine after radical prostetectomy. I am definately going to narrow my focus now on the Lymphocele as the source of my pain.

     

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    • Posted

      Mark.

      As I mentioned in my message 4 months ago, following my radical prostectomy I had severe groin and hip pain after walking for 15-20 minutes or working in garden, the pain became horrendous if I didn't stop. A lymphocele was detected and draines by keyhole, this lasted for three  months but then the pain came back and further tests showed that the lymphocele had returned, this lymphocele was being pressed against a nerve by the psoras muscle. I was then given full open surgery to make a hole and had it stitched open so that it wouldn't close, to drain any fluids into the pelvic cavity. Nine months down the line I am still pain free and actually able to go jogging again. My urologist admitted that he had never come across it before and was sceptical at first and was putting it down to a spinal problem, it was the spinal clinic that did the M.R.I. and who noticed the lymphocele. Go for it, insist that they remove the lymphocele for good as they did mine.

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    • Posted

      Hello Jim,

      I am a little confused as to the different procedures to remove the lymphocele.

      My first doctor removed lymphatic liquid from the pelvic area by means of a seringue and just asked me to do some lymphatic massage - lousy advice that was.

      My second doctor, under general anesthesia (due to the bad infection I had) made an opening (a couple of stiches) in the pelvic area, inserted a tube to drain all the liquid in the pelvic area. I had the tube in for 12 days until no liquid was coming out, then he removed it and said "we got it out".

      He checked 10 days later and their was no liquid trapped or "built-up" in the pelvic area anymore.

      Is this the operation you had?

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    • Posted

      My first lymphocele was drained (100ml)  by keyhole surgery and a hole was made so that any further fluid would drain into pelvic cavity, this was O.K. for four months then the severe pain in the groin came back and a further M.R.I. found that the lymphocele had returned, I then had open surgery to drain the lymphocele again but this time they made a larger hole into my pelvic cavity and stitched around the neck of the hole so as it wouldn't heal up again. Nine months down the line and the pain has all gone.

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    • Posted

      Hi Jim

      57 yrs old,Radical Prostectomy 11/28/2017, recovery normal , 12/10/2017 severe increasing hip pain. Followed up on this blog , everyones descriptions were exactly what I was experiencing. I week of  iibuprofen, pain was still severe, getting worse. I found this blog and spoke with my Doc's, the Urologist said it was unlikely as he had only one in 20 years.CT Scan confirmed a 10+ cm lump of fluid in hip on my psosis nerve. Anyway , my Doc called me up after the CT findings and called me DR John because I had diagnosed my condition. The pain was so bad that I had to sit, no moving and  Ice it. 12/21/2017 We proceeded to get a Radiologist Intervention MD ( RIMD) who placed a drain catherter into my hip. I drained 1800ml in a day and a half , then it stopped.  I ended up in the ER on 12/23/2017 with Septis, morphin etc.,the drain had blocked up,  .New RIMD placed a new gravity  drain in me, the previous RIMD had used a vacuum bag to extract fluid, big mistake.Admitted me for 2 days, pumped me with Antibiotics and finally got my white blood cells down  to normal. Draining at a rate of 300ml to 600ml a day. Realize if you have this it can last from 3 days to 79 days with the average being 22days. The DR's are starting me on a no fat diet which I think is ridiculous, as I am a skinny s**t. They say the fluid carries your fat . The cause is probably a unclamped lymph nod that is leaking from a micro hole. Usually the body absorbes this fluid, If it slows to just a 5ml or under for a few days it will come out. If not the RIMD can perform some procedure that can identify the holes . In the mean time I take pain pills to sleep . It is a pain in the ass but not life threatening.

      If anyone knows of some magic procedure that worked to stop this please respond.

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    • Posted

      I live in Los Angeles and UCLA Urologist Dr Robert Reiter is in the top 5 surgeons in USA. This complication is extremely rare. So I will keep you updated to what they do for me. I do not want anyone to be in the pain I went through. 
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    • Posted

      I also went to a top surgeon for my radical prostectomy but also ended up with a complicated lymphocele that we could not get rid of which ended up causing a great deal of leg pain (see my previous posts).

      As an update, we attempted to eliminate the lymphocele again 6 months ago by using a drain combined with a sclerosing technique which involves injecting an agent such as alcohol into the lymphocele in an attempt to shrink it so small that it will no longer contain lymph fluid.

      The good news is that immediately after draining the lymphocele, my leg pain went away. Six months into it, the leg pain is still gone. The bad news is I also ended up in the hospital with a bad infection due to the drain. After mostly recovering from the infection, I have experienced several urinary related painful symptoms. An additional ct scan revealed that the lymphocele has come back, is causing inflammation by pressing on my bladder.

      My recent urinary symptoms have mostly cleared up (I take anti inflammatory pills daily) and my original leg pain has not yet reoccurred. I am told that there is no surgery for this and that the only thing we can do going forward is to continue to keep draining it and that it can take several repeats of the procedure to be effective.

      Apparently these complications with lymphoceles are rare and there are different opinions on how to deal with them. My gut feeling is that my lymphocele will return to a point where is will have to be dealt with again. If anyone can direct me to someone who has a lot of expertise in this area (ie surgery, etc...) please also let me know.

       

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    • Posted

      Mark. I am wondering how you are progressing with your lymphocele. As I have mentioned in my earlier messages, getting my urologist to do something about my lymphocele took three years as he did not consider that the lyphocele was the reason that I was getting such severe groin pain, it was a spinal consultant that suggested it to be the problem, that a muscle was pushing the lymphocele against a nerve in the groin, and this turned out to be the case, firstly they made a hole in my pelvic cavity for the fluid to drain away, this was done by keyhole but it wasn't successful, I later had a full open surgery where they made a hole and stitched all around the neck of this hole so that it wouldn't heal up, and here I am a year on still pain clear, so much so that I am taking part in this years Great North Run at the age of 74 to collect money for Prostate Cancer Research. So if anyone out there would care to donate to this worthy cause it can be done via my 'JustGiving' page...

      Moderator comment: I have removed the link(s) directing to site(s) unsuitable for inclusion in the forums. If users want this information please use the Private Message service to request the details.

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    • Posted

      Jim,

      Great to hear about your lymphocele success and your upcoming run. I believe mine is finally gone also or least it is small enough that it is not an issue for me at the present.

      Mark

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