Women suffering from mesh complications often have difficulty finding a doctor who will acknowledge that their pain IS being caused by the mesh. When their pain and problems are finally acknowledged as being mesh-related (often when the doctor can actually visibly see the mesh eroding into their vaginal wall and there is NO denying it), what they are usually offered as treatment is a “partial removal”, or a “revision”.
A partial, revision, can also sometimes be called a “trim”, that the doctors will do right in their office, as if it is not any big deal. Even when they do removal surgery, most doctors will not even attempt to remove all or most of the mesh. Most patients are told removing all the mesh is “impossible” or “too dangerous”. I believe they are told this because for that doctor it IS impossible. Most doctors will only offer partial removals because that is all THEY know how to do. Somehow, the fact that most docs do not know how to remove implanted mesh, does not stop them from putting it in people anyway.
Doctors who are experts on mesh removal, like Dr. Raz, have told patients that getting partial removals only makes it harder to find and remove the rest of the mesh when complications continue (as they usually do). When the mesh is “cut”, it allows the remaining mesh to fray and fall apart – eroding further, into even more areas, and cause more complications and infections. This is why many women have surgery after surgery for mesh removal, unless/until they go to one of the experts at removing mesh. And, we NEED MORE EXPERTS on FULL mesh removal, AND on NON-mesh repairs.
So, unless you ask your surgeon, they may not even tell you upfront that they are planning on only removing part of the mesh, or that this is all they can do. Apparently, even when you do ask, some will tell you one thing, and do another. Many women wake up from surgery to hear, “We could not get all the mesh”. Or worse, women who were told that all the mesh WAS removed, only to later discover it was not. Some doctors even put more mesh IN when doing the revision. It really helps to know what kind of experience they have. Getting recommendations from other women who had mesh removal is invaluable. This was a big part of why I went to Dr. Raz – he had excellent feedback from the women who actually went to him.
Initially, one local doctor told me they would remove my mesh, and didn’t blame me for wanting it removed. At first, I was so relieved. I just thought, “great! Lets get this crap out of me!“. However, when I started asking questions, they told me they would only remove the middle portion of the sling. They said, it was “impossible” to remove the parts down in my thigh/groin, which was where my pain stemmed from. I didn’t see how removing just a small piece in the middle would help me. Especially when I did not have vaginal erosion (yet) or vaginal pain. The doctor also did not sound so sure it would help, but made it sound like no big deal and we could “try it”. Well, I not only didn’t see how it would help, but I feared it could make things worse. When I told my doctor I had heard of some doctors doing full mesh removal, and mentioned Dr. Raz, the doctor said they had heard of Dr. Raz, but that THEY thought it was too dangerous, and would not recommend it. Well, there’s a big difference between “impossible”, and something they don’t personally recommend, isn’t there?
Fortunately, when I went to that local doctor, I had already been researching (a lot) on my own and did not just agree to the partial removal. I heard from other women in support groups that partial removals were not helping them. In fact, many were saying how they were only getting worse. One woman, who’s case went to court, had 18 removal surgeries. Eighteen! Luckily for me, I heard about Dr. Raz, and even though he was across the country I decided to go to him for a consult. When I met with Dr. Raz, he told me he had removed many many TOT slings, and that because I had NOT had any partial removals, removing my sling would be easier than most. Not easy, but “easier”. He told me that while full mesh removal surgery, even for the experts, is still difficult – removing it completely, or as close to that as possible, was my best bet at full recovery. Unfortunately, there are not many doctors like Dr. Raz that are experienced with mesh complications or removal surgery, so often women have to travel. While traveling for surgery is not easy, in the long run, it can help avoid further surgeries and complications.
I am not sure why most doctors will not refer patients to one of the experts that can do full removals or even mention that as an option before doing a partial removal, but most do not. If you are planning on having mesh removal – please do some research first. Ask a lot of questions.
- “Questions to ask BEFORE mesh removal” http://meshmedicaldevicenewsdesk.com/kathleen-questions-to-ask-before-mesh-removal
Perhaps even more helpful than articles, was talking to a variety of others who were suffering mesh complications, and were in various stages of treatment. You can find support groups and invaluable information at:
- Women’s POP/SUI TVMesh Complications Support (Closed Group): https://www.facebook.com/groups/317477065098820/
- Fighters and Survivors (Closed Group): https://www.facebook.com/groups/111893665491196/
- Mesh Problems (OPEN TO ALL, including doctors, etc): https://www.facebook.com/groups/meshproblems
- More resources in footer on main page of this blog!
Please remember that mesh complications vary greatly, along with unique individual circumstances and opinions. Often, there is permanent damage that even full mesh removal can not change, but at least, once removed, the mesh isn’t still eroding and causing even more complications. Yes, even with full mesh removal, further repairs are often needed, but with the mesh out, you are more likely to be able to heal rather than be fighting chronic infections, and inflammation from FBR. This is, of course, my opinion based on my own research and experience, and no, I am NOT a doctor.
I know that there is not one cookie-cutter answer that will work for everyone and while I highly recommend full mesh removal, and Dr. Raz, I also recognize that everyone is different. Perhaps, in some cases partial removal IS the best option. ?? However, unless I heard that from an expert, who also believed in and was capable of doing FULL mesh removals, I would question that opinion. You have to remember, the doctors are also being mislead by the mesh manufacturers, and they also do not have all the answers.
In the end you have to make your own (hopefully educated) decision, and go with the doctor and treatment that seems will be the best fit for you.
Finding the Right Doctor for Surgical Mesh Complications:
Searching for Docs Experienced with FULL Mesh Removal and/or NON-mesh repairs:
Mesh-Injured People: Not rare. Not going away. NOt getting support! :
Perhaps even more helpful than articles, is talking to a variety of others who are suffering from mesh complications, and are in various stages of treatment. Three of the larger support groups I found helpful are:
- Women’s POP/SUI TVMesh Complications Support (Closed Group)
- Fighters And Survivors of All Transvaginal Mesh And Hernia Mesh/Plugs (Closed Group)
- Mesh Problems (PUBLIC/OPEN TO ALL, including doctors, etc)
- More resources listed on the footer/main page of this blog!