I had a hysterectomy and a bladder repair mesh sling done in 2008. I have had hip and leg pain ever since, very painful. Now my bladder is prolapsed, my doctor said that the sling is in place, but why is my bladder prolapsed??why?? I have a hard time peeing, no water pressure and I feel like after I pee, I can still feel that there is still urine in my tube. I leak and have Painful sex, I'm so frustrated!! I don't seem to have a doctor that wants to listen, went today and he wanted to fit me next week with a bladder pessary. I just cried!!! I'm to young for this:( Fill like this chronic pain is killing me. Can anybody help me??
Hello and welcome to the Urogynecology forum. I am sorry to hear of your distress. Did you have second opinions after your op in 2008. I see you have had problems from straight after the operation and this together with the problems you have having now need to be assessed by an experienced Urogynecologist.
Your Dr has a duty of care...however, simply being told you need a bladder pessary with no explaination as to why this is happening is not that informative. Get a copy of your operation notes from you Dr. You may be able to get a copy from the hospital as well if needs be but your Dr will give you a copy if you request them. I would put this in writing and be clear with the Dr that you want to know in his opinion why you have had leg and hip pain since straight after the op as well as what your problems are right now. How many mesh operations had the Dr done when they operated on you?
There are many questions to ask in order for you to know what has been going on from the beginning as well as right now.
I wonder about the positioning and tension of your mesh and would want to get a second opinion about this as well as all of your symptoms right from the beginning of the problems you have been having up to present day.
Keep a clear mind and take someone with you to the appt if you can. Write down you questions as well and stay calm. I know it is difficult when in pain and distress but let your goal be to get all the information about what is wrong in prolapse and mesh terms and then consider your options offered by this Dr and also at least one other Urogynecologist. If this Dr can give you a pessary you can tolerate for now, it may buy you time to find out what to do.
I hope this helps.
I dont have a list of Drs no but the Urogynecologist on this site tends to recommend fellowship trained Urogynecologists if living in the USA. Find out how many operations they have done like the one you had and ask them their own success rate. Your General Practitioner may be able to help you to find one as well.
Let us know how you get on.
Hi, you might want to contact teaching universities near you. Sometimes you can find wonderful surgeons that way. Also if you do not get anywhere on the phone with whomever you check out ask them for a referral. You need a urogyne that specializes in repair of previous surgeries. That might take you a little longer to find and you might even have to travel. Start digging on the internet and go from there. Talk to whomever you can about your quest to find the right doctor. I live in Florida and was willing to travel in my state for the best surgeon. I checked all the big universities and that is how I found my surgeon.
Thank you! I have done just that. I called Duke medical and have an appointment for 4/25. Have to drive 3 hours but they are an awesome hospital! I'm so ready for some help! Thank you for your comments! Have a great weekend!
Great, we wish you the best of luck. Be sure to write down your questions and try not to be intimidated. Conduct it as a business interview, and interview the doctor as you would an employee. Hopefully this doctor will get the job!
Hi Summer. I wish you luck with Duke. I know it wasn't easy for me when I was having problems to find help. I had a TOT mesh implant for SUI in Feb 2012 and wound up having some pretty severe complications... mostly chronic pain in pelvic/hip/groin that wound up progressing until I needed to use a crutch and pain meds just to walk at all. When I looked for help, I very much got the run around, and at one point was told I might need hip surgery by orthopedic doc. The more I researched things, though, the more I thought it must be the mesh. Finally a local UroGyn told me it very well could be the mesh, and they would remove it. I was thrilled at first, but soon learned they meant they would only do a partial removal - snipping the middle behind my vaginal wall. I didn't see how that would help with the type of pain I was having, and actually I heard so many horror stories of partial removals leading to more problems that I was afraid to try that. This local UroGYN told me it was impossible to remove the whole sling, especially the part in my groin/obturator where my pain stemmed from, but I had been researching and heard of a few specialists who could/would remove the whole sling. Unfortunately, I had to travel all the way to UCLA (I'm from NY) to get this kind of help, but I feel like it was worth it. Dr. Raz was amazing (at UCLA) and was able to remove the entire sling. That was pretty tough surgery, but I am glad to get the mesh out. It did relieve the constant stabbing pain that I had and I am a little better now, however, I am still very much in recovery mode. It is a slow process and I am still having difficulty walking and with general pain. I just started myofascial release therapy and will also go to chiro this week. I'm hoping that now that mesh is out, these therapies will help and that I don't have permanent damage from all this. Best of luck to you.
Hi Deb. I am so glad you have had success in removal of your TOT Deb and wish you luck with your therapies as well. We are very grateful that you have shared your story and given such important information that I have no doubt will help other ladies in similar positions.
I have also heard of ladies in the UK who have had successful removal of mesh for TVT operations. It can be done and yes it is very important to find the right Urogyne.
Keep us informed of how things go for you Shelia. Good luck and best wishes.
What are scars like - does he go through stomach to remove it? I am thinking of traveling out there as well to have him remove it, as it seems he is one of few who remove entire sling w/anchors. What is involved in terms of surgery and did you have hard time getting insurance to pay?
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