I have had numerous problems since my tvt sling almost four years ago and have been passed from doctor to doctor. Finally this year I have had the mesh dissection, which helped the slow urination, but no other problems have been helped such as yellow thick odoress mucous formation, tingling in left inner calf and foot, feeling a poking on anterior vaginal wall around "G" spot area, pulling downward feeling on both sides on mesh insertion area...mainly left side which now abdomen sticks out further on this side, not able to tell when I have to urinate very well except when I feel the sensation suprapublically...then when I do urinate--pain sensation along sides of bladder and then goes directly to that anterior vaginal "G" spot until it subsides. Get cold,wet feeling in abdomen above insertion of mesh site often. Right side keep feeling a blurp , blurp like tendons crossing eachother as I bend over. Swelling of abdomen and ankles, even all over bodily, upon movement like doing laundry or loading dishes(bending)...left side of abdomen distending out the most...this being the same side that was said to have scar tissue forming days after my surgery. Overdisstention of my bladder at hospital and home due to not being able to urinate after tvt surgery. Only thing to help me is ephedrine, caffiene ,diuretics for swelling and laxatives(which may be relaxing muscles) Understand that obterator internus muscle may be causing some of my problems which physical therapy will tell.........but how do they know that this tvt sling is not causing the obterator internus muscle to tighten.......seems like doctors are always trying to place the problem on the patient and not the procedure gone wrong or the mesh not being compatible to my system. I am tired most of the time by mid day...probably because movement starts the swelling all over again after a nights rest....if I did not take the diurectics I become so stiff that I can hardly bend over and then begin to sort of limp with my left leg becoming weakened.
I hear women say they are having mesh removal or have had mesh removal.....yet, all of my doctors are saying that it cannot be removed due to mesh being embedded into muscle tissue. Would really and truly like some imput on this or email me. Thank you for reading and listening. I am becoming very weary of no relations with husband...can you imagine his side of this even though he is such a rock....I have pain and abdominal swelling for days afterward if we do. Asking for anyone to help with similar situation.
You poor dear! I feel SO for you! I had a prolapse repair and tvt sling done in sept 07. I too have similar problems. I am also at a loss as what to do. My gyn told me it would loosen up over time after I told her it felt too tight. I am so miserable most of the time. The Urologist that inserted the sling left the practice 6 weeks after my surgery. The Urologist that is still in the office looked in there with a camera aout three months or so after surgery and said all looked fine...and gave me Flomax...no help...the next visit he added Detrol LA...no help...the next visit last week was..."oh my...you have another cystocele and need to see your GYN and have it repaired the old fashion way. I am SO afraid to let them touch me again! I can hardly stand to sit in a chair....feels like something is inside that shouldn't be there and I feel a "binding" inside that runs down the inside of my leg...wearing my pants really loose does not help! I too can't bear having sex. I hurt for days!! It also have slight pain when bending over..but not major. I have bad swelling in my stomach and addomen also. I am 55 years old and have considered having it sewn up I am so miserable! I wish I had never had this horrible thing put in place. I think the incontinence would have been better. I didn't have a problem with it before the surgery...but was told with the prolapse repair I would if I didn't let them install this sling. I had the gynacare tvt sling (tension free)...which kind did you have? My Urologist says he doesn't think my problems are sling related!! So why are so many of us having the same problems after having one?!! I feel so much better over the weekend when I am not sitting as much....don't know what I am going to do for another 11 years before retirement. I also ride a motorcycle...and have only ridden once since the surgery...it has just so changed my life. I sure wish I had anwers or help for you
My advise would be to seek out a specialist that specializes in Pelvic support disorders. I was lucky enought to find one and a Urologist who is top notch here in the midwest, they will be fixing my mesh issue with removal in two weeks. As was explained to me they can remove the bottom part of the mesh (the amount depending on how much disection they need to do) but the ends of the sling is very difficult to take out and will probably be left due to being burried deep into muscle and nerves.
It took a couple phone calls to the teaching hospital I will be going to and was confirmed by a good referal. I am sure if you ask around someone could email you some info.
Ok,(wildpiglet), without going on forever, I can tell you a few things that I know only from my experience of suffering which has lead me to where I am today. First, I would run, not walk to a "urogynecologist"....and I do not mean one that is a gynecologist dabbling in urology..I mean one that is a board certified urogynecologist. Their exam should be one like none you have ever experienced. They will check the internal muscles as well and also run testing for pudendal nerve problems.
Now, as I mentioned , the obturator internus muscle is one that always holds tension in the pelvic area, naturally, since you need to have control of things coming out down there. Due to many reasons (one, being placed in the lithotomy position for a long period of time during surgery or child birth or nerve damage-many reasons) this ob.int. muscle can tighten like a rod... this muscle does not have the capability of relaxing on its own so it will just continue tightening once the nerve memory tells it to do so...this cycle has to be broken with internal physically therapy or botox or other intervention. Doing Kegel excercises will only make this muscle and the symptoms worse. (By the way, look up the side effects of Detrol ...I think it says that one shouldn't be using this if you are having trouble urinating) Look up "obturator internus muscle tightening" on the internet and it will give you the symptoms it can cause which include anterior leg and groin pain and suprapubic(above pubic bone) pain, vaginal fullness,etc. This muscle is an adductor.. being that it helps pull your leg laterally inward.
Lie on your back with your heels on the floor pulled up toward your buttocks, then do a frog leg outward on each side and pull leg back toward your body...see if you can do this with ease or not...the leg that is harder to adduct is probably the more tightened obturator internus. This muscle can be exacerbated by sitting for prolonged periods(ex,riding in car), standing for long periods, etc.
Now, question is, what comes first, the chicken or the egg....is this muscle causing all of the problems or is the mesh tape being inserted or perhaps even slightly being meshed to this muscle that is the cause? Seems like the doctors I talk to all think that this is a separate problem....but as you stated, how can so many have the same problem after having the tvt mesh placed...I never had these symptoms after having any of my children. It is easier to place the problem on the patient rather than the mesh, in my opinion. Or, should they be determining ahead of time if women have this tightened obturator int. muscle and treat it before they have tvt sling surgery?
However, if physical therapy cures the problem, that will be great. I am scheduled for this to start in December............but that leads me to my next problem....all the doctors I have spoken with say that this muscle tightening will not cause the abdominal swelling and foot and ankle swelling that I experience on a daily basis with extensive activity.....so now what.....not to mention all the other symptoms. My pain consultant doctor says that his nerve injections say otherwise...he feels that his nerve blocks and treatments with the results do not support just the obturator internus being the only thing involved. He did inguinal injections (look up inguinal entrapment) which completely took my swelling down so much so that people thought I had lost weight overnight and I had my waist back. Only this did not last long since my movement started irritation again.
Now, can this mesh be removed? I do not know, I have heard so many people say that it is embedded into the muscle now and doing so would place one at risk for other problems and possible nerve damage. Yet, I have read where people say they have had their's removed. I just wish I had done my research before I had this tvt sling surgery...I would have opted for what my Mom had years ago...'open me up and tie up the bladder', as she says...with no problems since...who cares about the recovery time.
Oh, by the way, I had the Caldera sling placed...and I have had trouble finding any info on this and my urologist had never heard of it. I do know that there is a class action lawsuit going on over the internet regarding the Gynecare mesh company. Do your research, I have had years of this and still am not that far. Forums like this, where people like me can speak will save someone from all the years I have spent just to find out what little I know.
Another question: How can the doctors that are placing these meshes into women say that the meshes are causing the problem? That would be a conflict of interests wouldn't it? I have read so many forums where women are describing so many "like" symptoms after the same type of procedure and yet the FDA does not step in...when do they feel this would be necessary?!
You stated you had a cystoscopy. Just because the mesh has not migrated into your bladder or urethra does not mean it is not irritating the outside of it. Also, I went for almost three years of complaining when I finally had a doctor do the mesh dissection in the middle and got relief of "trickle" flow where I had to move all around to get the urine out...the flow is much better...thank you for at least that.
Well, I am sorry to hear about your discomfort and more sorry that we as women are being subjected to this. I am not saying that this procedure does not work for many woman(my sister for example)....but, again, every body is different and nothing is across the board. I think better protocols need to be set in place before anyone has this surgery and doctors need to be better trained to know how to handle problems that arise after surgery.
I am long winded here, but four years of the same problem tend to make you that way. I hope this information helps.
I had a posterior mesh removed (prolift) by a urogyne that works at the Mayo Clinic in MN. I had to go to four urogynes before I found one who was willing to take it out. They were not able to take all of it out, because the ends were inbedded in areas that were dangerous to go into. All of these mesh surgeries seem to have that in common.
The first step is to find urogynecolgists in your area and go in and see what they have to say. I had some tell me to go back to the urologist (quack!) who put the mesh in--no way I was going to do that!, one had done research on this mesh and could not believe it was a problem--he wanted to put more mesh in me, another told me it wasn't dangerous to live with it eroding--even though sex was painful and I had this yukky discharge. Finally I found a doctor who had done removals and was willing to help me. I am so grateful for that. I was starting to think that all of the doctors thought I was a crazy person and didn't want to deal with me. In retrospect, I think they didn't want to deal with the mesh removal.
Anyway, be strong and keep seeking a doctor that is willing to help you. My removal was for mesh that is not in the same area as yours, so I'm not sure what the outcome for you would be, but I am doing great now. The urogyne who removed the mesh also put in a sling for my stress incontinence, made from my own fascia. It worked great.
E-mail me privately if you want the name of the urogyne who removed my mesh. He told me that he saw the urologist that put the mesh in at a doctor convention and tried to tell her about the complications from mesh he is seeing. She blew him off, and told him none of her patients have had complications. What about me?
Thank you. my email is <oops! removed for your safety and security ~ please use the private message/email facilities within the user's profile> if you could send the name of the doctor. I am in Atlanta Ga but maybe they could refer me to someone that is trustworthy in this area. How long has it been since your last surgery?
I am in the grandrapids, Mi area. My email is <oops! removed for your safety and security ~ please use the private message/email facilities within the user's profile>. I have been to see a dr. <admin> in Ohio Urogyn who said it was only my obturator internus muscle tightening that is causing the problem. Again, with what I am hearing of "like" symptoms, my suspicion is that this mesh tape is causing these pelvic muscles to go into spasm. Anyway, she would not even aknowledge the swelling I was telling her about with bending motion.
I am seeing a urologist now whose name is <admin> , but she just told me it cannot come out...so I brought some internet papers to her where Dr. <admin> and <admin> in Atlanta ,GA are taking out mesh laparoscopically. She said she was going to call Cleveland clinic for me and inquire on how many mesh removals they are doing....so far I haven't heard from her.
I too have been suffering since May 15th 2007. Had a rectocele repair with complete vaginal hyst but worst part was the insertion of the GYNECARE TVT TAPE that gyno used. It began to erode from my vaginal wall about nine weeks after my surgery on the right side about 2 mm. I could not sit for any amount of time without being in the most excruciating pain. I went back to my gyno at least ten times over the last year with a bad discharge and the worst bladder, pelvic pain. He would just look at me with a non caring stare with no empathy and stated his surgeries do not fail and that the erosion was only 2mm and that i should just deal with it. OMG i could not believe what he was saying. The pain and discomfort that i feel every moment of every day is affecting my life so that i can not enjoy time with my daughters and granddaughter. I am also having pain and swelling in my legs. My legs have a burning, tingling sensation since my surgery. I finally went to a female gyno July 14th 2008 and she said that the tape was way to tight and that she could cut down the middle to loosen the tape and removed as much a she could on both sides. This has greatly reduced the tightness that was making me insane with every movement. I continue to have flare ups of vaginal discharge and feeling like there is something bulging around my urethra and the worst burning in my lower abdomen and pelvis that is so painful. I am waiting to call her on Tuesday when she returns to have her take a look down there and see why i am having so much pelvic, bladder and urethra pain. I feel like i have another raging infection in my pelvis and i am scared that this is how i am going to have to live for the rest of my life. I feel so strongly that that my body is rejecting the TVT Tape. There has got to be a light at the end of the tunnel as i have always been a very positive person and a problem solver but this is really getting me down not to mention how this is affecting my relatonship with my husband.
What can I say....I have to tell you that I feel like I just cannot tell anyone any more about my symptoms and problems....I am so very very tired of telling my story from doctor to doctor and trying to remember everything only to have the doctor pull just "one" symptom and try to address it as though it is your physical problem...not the fact that this all started days after I had this tvt Caldera sling placed. I have not had relief since, and like you stated, it is affecting the way I treat myself , how I react emotionally , how I interact with people, how I tend to not want to go out anymore, how I cannot play with my 4 year old outside like I normally would, how my relationship with my husband is next to nothing.
I do not know what to do and I am very tired. Tired of fighting. I have yet another doctor that my new urologist wants me to see here in Grand Rapids. Then a patient of my husbands had tvt erosion and she went down to Mayo and the Dr.k removed only parts of it....I feel I have to have all of it removed since I feel my body has been rejecting this since it was placed. Like you, I have the odoress discharge, and as I read over the internet....this is a sign of rejection, not to mention all the abdominal swelling and ankle swelling I have and tingling down left leg and the bottom of my foot, which is most likely due to inguinal entrapment of the inguinal nerve from the mesh being placed too far out.
So much, and no one who cares about what happens to you....my gyno just sits there and listens and attends to only the complaints she can understand...the others she just looks at you glassy eyed and says "I have done all I can do"...and shakes her head and shrugs her shoulders....she does not offer finding any doctors for you to see or anything...she is clearing leaving that up to me..since due to other matters as well , she must realize that there are potentials here for a hearing....I was given a Gynecare Tvt pamphet and then had a Caldera sling placed in the surgery....my urologist had never heard of this type.
There is so much more. Anyway, I am not sure how you can get my email from this site since they do not let you put it on here like other sites do. It would be so nice to be in contact with those who are in your area or who have had success with help from a doctor. I know there is a way, but I am not sure how to do that right now without looking.
I am so saddened by your care and I let my husband read your note and he said it sounded so much like me. I told him, "this is all over the internet"...tell me that those doctors who specialize in placing these tvts do not know this....they do I am sure...but do not know how to address it and many of them scratch eachothers backs...so they just keep stringing you along in hopes that you will go away.
Let me know if you find anything other out. Lidia