TVT mesh and urethral pain? HELP!

PLEASE HELP ME !!!
I had TVT surgery for stress incontinence in 2009. Within a few weeks, I began having occassional burning/irritation of the urethra and vaginal opening. This has become more and more frequent and is now constant. It is very difficult to urinate when it is flared up. Not because of burning. but I just can't go much at all. At first, prosed worked but now that it is constant, only flagyl works. Lidocaine burns horribly. The odor is terrible when  not taking the flagyl. I tried mold vinegar and water douche once and it burned so much and didn't help the odor. MD originally said that it might be a bit of irritation because of the way my bladder sits and possible stretching of the urethra. No that it is constant, he has diagnosed it first as a pinched nerve and now as possible interstitial cystitis and 2 compounded creams have been tried but burn intensely and do not help the problem or the odor. He says that the mesh is fine. He also mentioned once in passing that the mesh felt a little tight. I am at a loss. Could the mesh have eroded into the urethra? Do I need to seek an opinion from a urologist rather than my urogynecologist ? It it like sitting on a sandspur. The only relief I get when not taking flagyl (amoxicillin works, too) is ice packs applied directly to the urethral/vaginal area.

[UKlady1001]

I am so sorry to hear of your distress.  I am very glad you are considering a second opinion.  I feel a Urogynecologist is your best bet for a second opinion at least to begin.  There is deffinately a problem here you need to sort out.  Although I have not had mesh myself my instinct says you could have mesh errosion or that it is too tight and it is interesting that your urogyne has said the mesh feels a little tight, however there is lot going on here and you need a good Urogyne to look at what is happening now.  Get all your notes on the operation from your Urogyne and set up an appt asap.  The Urogyne on this site recommends a fellowship trained Urogyne ( I am guessing you are in USA).  There are sites to help you find Drs in your area or you could go to your general practitioner to ask for their help in finding a good one as well as getting you the referal as well.

If you have a bad smell then this is usually an infection and the fact that you get relief from antibiotics backs this up.  I personally am not keen on douching as it tends to make me sore and wipes out all the natural good bacteria etc.  I see you have not had relief either from this so you may wish to stop this at least until you have seen a new urogyne for a second opinion.

Write down all your questions and take someone with you if you can for support for your new appt.  This is going to be the next step you take to find out what is wrong and how you can get it sorted out.

Lots of luck and best wishes.  Let us know how you get on.

[UKlady1001]

I am so sorry to hear of your distress.  I am very glad you are considering a second opinion.  I feel a Urogynecologist is your best bet for a second opinion at least to begin.  There is deffinately a problem here you need to sort out.  Although I have not had mesh myself my instinct says you could have mesh errosion or that it is too tight and it is interesting that your urogyne has said the mesh feels a little tight, however there is lot going on here and you need a good Urogyne to look at what is happening now.  Get all your notes on the operation from your Urogyne and set up an appt asap.  The Urogyne on this site recommends a fellowship trained Urogyne ( I am guessing you are in USA).  There are sites to help you find Drs in your area or you could go to your general practitioner to ask for their help in finding a good one as well as getting you the referal as well.

If you have a bad smell then this is usually an infection and the fact that you get relief from antibiotics backs this up.  I personally am not keen on douching as it tends to make me sore and wipes out all the natural good bacteria etc.  I see you have not had relief either from this so you may wish to stop this at least until you have seen a new urogyne for a second opinion.

Write down all your questions and take someone with you if you can for support for your new appt.  This is going to be the next step you take to find out what is wrong and how you can get it sorted out.

Lots of luck and best wishes.  Let us know how you get on.

[summer59]

A good urologist should be able to give you some answers. There are several diagnostic tests to examine the urethra and bladder. A cystoscope (catheter  with camera) can see in your bladder and urethra which may diagnose ic or urethral diverticulitis.  Don't worry they numb your urethra first!  It is not un common to have problems with mesh and tightness issues.  If the urologist thinks your problem is related to your past surgery I would then get a second opinion from  a urogyne.  I am ten weeks post prolapse surgery.  Every time that I sat in the waiting room for my urologist or urogyne there was someone there with mesh problems. In fact last week at my urologist office there was a man waiting for his wife who had mesh removal. I say this to you not to worry but know that you are not alone.  I wish you best of luck.

[MSM35]

Thanks much for your replies. Current doc has me using a gel compound of ketamine, diazepam, and baclofen. Nothing for possible infection. It worked for two days and I had to start the Flagyl again this morning. I think he just doesn't want to consider the mesh and doesn't want to do the obvious which would be to look for infection and examine at the urethra and bladder as suggested by "summer59". If he's afraid of litigation, I might not sue him for implanting the mesh, but I might consider it if he continues to let me suffer. Couldn't sleep until 4am and then back up at 6. Miserable. Thanks again.

As I was typing this, the nurse from the medical university called me with an appointment. This doc is supposed to be very knowledgeable about mesh problems. It is a 2 hr. drive but it will be worth. It's not until the middle of January but it's something to hold onto.

[UKlady1001]

Glad you are forming a plan of action and hope you are feeling more in control.  Sorry you are having so many problems.  Remember to take all the notes from your operation with you as well as any test results on your infections to your appt in January.  
We are here for you if you need us as well.

[summer59]

You can request a copy of your surgery.  My surgeon gave me a copy at my first post op.  It is a detailed report of your surgery.  When I read mine I didn't understand a lot of the medical terminology but a doctor surely can!  I would show that to any new doctor you see for this problem.  You can also request  the notes of all your visits with your surgeon. Please let us know how your appt in January goes, best of luck to you.

[MSM35]

Thanks much! Will do.

[MSM35]

Just to update my situation:
I saw a urogyn at the medical university this morning. He very quickly determined that a portion of the mesh was exposed and infected. I am scheduled for surgery in a few weeks to remove a portion of the mesh.

Thanks again for your help.

[UKlady1001]

Very glad you have managed to clarify your condition and determine a solution to your problem.  I hope you are not in too much pain.  
At least now you know what is causing the infections you have been having and you can look forward to getting the that portion of the mesh removed.

Great news and thank you for getting back to us.  
Let us know how you get on.

[summer59]

So glad that you persisted with your gut feelings about the mesh and infection.  It must be a relief to have answers now.  I hope you have a successful surgery and complete healing.  Good luck to you