Because I struggled before each surgery and had to find a way through fear, I did a lot of research to find help. But the truth is there really isn’t help and you have to find a way to get through it the best you can.
There are many reasons women say they can’t go far from home for surgery and all are valid. I completely understand every reason because I lived through this and had to find a way to face my own fears and put myself first to do something about the mess I was in because of a mesh bladder sling. However mothers do not find it easy to do things for themselves, including spending money to travel far from home for a surgery.
I constantly see women wait far too long to get their mesh removed and by the time they do, they are in a desperate situation. I do know why of course. Some have no clue that mesh has caused their health issues and have gone through many years having all kinds of tests and they are left with no real answers. Other’s figured it out but they have so many commitments they put themselves last. Believe me if I had had a way to get mine removed far sooner than I was able to, I would have jumped at the chance and I know other women are in the same position and they don’t have a choice but to wait.
I also know that often the easy way is to go to a doctor as close to home as possible and yet it can be a huge mistake with long term consequences. To remove mesh from the bladder takes a lot of skill and someone who is practicing doing this can damage the bladder forever. That can mean living with another implant called an Interstem, or having regular botox injections to calm the bladder so that the woman can cope and try to continue living life.
If you want to know how I have learned so much it is because I spent hundreds of hours listening to women while I waited to get Medicare and I could go at last to have mine removed. I was out of money and options after my implant and it took over two years before I could find a way to have it removed. By the time I could go I knew where I stood the best chance of having it removed but I was scared and wondered if life could get much worse after removal. I went through a lot, but now I can say I am thankful I faced all my fears and I had it all removed and at least now I am not as bad as I once was and it can’t get worse now it is all gone
I know there is so much fear in having these surgeries. Fear about how we will fair after surgery is something we can’t do anything about because no one knows what the end results will be. Up until the day of surgery we live in a state of panic or we have accepted we have no choice because the complications we live with are so hard to deal with on a day to day basis. In the end, we succumb to surgery and just hope we will survive it. I am not the only one who worked through my fear by making sure my Will was in order and I gave my daughter instructions to try to make her life easier, if anything happened to me. That was MY coping mechanism.
Today I am going to tackle a few of our fears. Fear of surgery, family commitments and money are the top fears we have to deal with when making decisions to fly far from home. So let’s think about those.
I am so grateful that there were not so many Facebook support groups at the time I was going through this because they seem to be where women hang out, describe their pain and do little to work on a future. There is little information you can use and most is more confusing, so honestly you are better off avoiding them and work on your own life. It seems to me there seems to be far too many agendas on support groups that have nothing at all to do with support. You are truly better off making your own decisions and avoid receiving personal messages from others in these groups, telling you who to trust or not to trust and then pushing a particular doctor on other women, while doing it all behind the scenes in secret. That is very suspicious of the person who does this and you don’t know what their true motives are. Anyone can pretend to be someone else on Facebook and this should be a word to the wise not to get involved with these people. I post publically how I feel and I am not going to control what a woman should do or who she should choose for her surgery. I can give my opinion but it is her choice what she does. Women also know me and many have met me when I was going out to UCLA, so I don’t hide who I am or what I have gone through.
I know what it feels like to be desperate. To want to reach in and cut out something from inside my leg, was often on my mind during the first two and a half years. By the time it was removed, I also felt like I was on fire, inside my vagina. I knew something else was going on but did not know what it was. I found out that that the mesh working its way through my urethra and that caused even more damage. Other women I know have erosion in the bladder and they are in terrible pain and don’t know where to turn. I also know women who are having a very bad immune response to the chemicals used to cover the mesh during manufacturing. It takes years of tests and wrongful diagnosis before they see a light at the end of the tunnel. Once they do face it they feel so much anger and frustration as to why doctors either did not know what was going on, or don’t want to know about their complications.
Even after six years it is amazing to me that rather than admit mesh causes these issues, doctors walk away knowing their patients are in terrible pain and will deny the truth. They either try to convince a woman that it isn’t the mesh and she has other problems and that is why she is in pain, or they walk away and never want to see her again. This way they can keep doing this with a clear conscience and ignore the bad results. I will honestly never understand how doctors can be so hard and non-compassionate when the whole career of being a doctor is to help people and lessen their pain.
So first what about family? Over all the years of doing this I have learned that women who ASK for help from their families and community, fair the best and actually have far more support with their surgery fears. This means talking to husbands and children or going to church and opening up to others, whichever way she finds a way to share and cope. Asking family for help with young children and financial help isn’t easy, but women would do anything for their husband and children without being asked and yet they don’t ask for the same for themselves. You cannot possibly be there for your family if you let your health get so bad and put everyone else first. So TALK to them. ASK for help. Allow them to go through this journey with you and tell them of your fears and I am sure they will come back with the support you need. Don’t cover up your fears because family are not blind. By you not explaining what you are going through, you could be causing them anxiety and fear because they are seeing your decline in health.
I know women who did open up to friends and family and they began doing fundraisers while the woman waited to go for surgery. I know some who did it by asking those who they know to do a lunch plate sale and asking a restaurant to cook the food and get a decent price so they could sell and make a profit for the expenses. There are many, many ways women managed to get financial aid from friends and family once they spoke out to tell them what they are going through. When they did this they actually found relief from the financial fears they had.
If you want this to stay completely private you definitely are not going to get help from anyone nor will you be doing other women a service by remaining quiet. They deserve to know about mesh and what it can do to a woman’s body and YOUR plight is a perfect example to share that you do not want any other woman to suffer the way you do. In fact by speaking out you will find stronger ties with women who are also having problems and did not want to think mesh was the cause. Believe me if a group of women are in a room together and someone begins talking about this, others in the room will understand and already had suspicions that mesh was always the cause of the health issues. So by sharing you opened a door and can then help others while you go through the removal process and by doing it you put some of your own surgery fears to rest.
Most of us fear dying during surgery and yet I don’t know any woman who has. Perhaps the fear is unreasonable but it’s still there. Getting our affairs in order can be of huge help in dealing with this fear. Talking to our loved ones is another way and you may help them through their fears of losing you as well as helping yourself. If you still have a problem thinking about the surgery, you may need to find a counselor but it is good to know none of us are alone in this fear. You can read this taken from something a man wrote about his impending surgery and then you will understand what I mean.
“Very recently, I faced the need for surgery on my left shoulder, because I suffered a rotator cuff injury. While the diagnosis was not a serious, as one that is life-threatening, I nevertheless experienced a lot of anxiety leading up to the operation.
What were the reasons for my anxiety? I knew that this was not a life endangering procedure. I had full confidence in my surgeon. I saw my MRI pictures and clearly viewed the injury. I also had a lot of pain and reduction in motion of my left arm and shoulder as a result of the injury. Therefore, I was very confident in the fact that I needed arthroscopic surgery for this problem.
I let my feelings be known to my family and closest friends. Working in mental health all of these years. I knew it would be better for me to talk about my feelings rather than suppress them. Each time I brought this up with my wife, adult children, and very good friends, I was left with a feeling of dissatisfaction with their sincere responses. These are people I know and trust. All of them assured me that I would get through the surgery and be fine. So why was I bothered by this response?
I came to realize that it wasn’t worried about getting through the surgery, and I wasn’t worried about whether or not the procedure would be successful. Instead, I came to understand that it was the anticipation of the pain after surgery was all for that I was distraught about. This was especially true because I was told that I would need 6 to 8 weeks of physical therapy in order to regain full functioning in my arm.” You can read more here
If you really needs someone who understand what you are going through, rather than stay on support groups continuously, seek out a ‘fear buddy’ close to home. Don’t just trust and open up until you really get to know them but take your time while you wait for surgery and watch and see what they post on these groups. If you contact someone, let them do all the talking before you give them out personal information. Believe me if someone is pretending they have complications, it won’t take too long before you can see they don’t.
For women going through pelvic surgeries it is far harder because our fears are also about how we can do what needs to be done to keep our homes in order. But that is where asking for help comes in. None of us are Wonder Woman. After surgery there will be some pain and you have to rest to get better. You won’t be able to lift anything over 6 lbs. for a few weeks. You will have to stay in bed a few days and then lay around on the couch. This means asking for your family to step up and help. It also means the house may have to be in disarray for a few weeks and everything won’t run the way you like it to. But honestly who cares? You have to learn to let it go and ignore it, otherwise, you will be right back where you began within a few months.
Fear should not be about if all the dishes get washed on time. Fear should not be about trying to get back to work in a short period of time. Ask your doctor to extend your time off by filling out the necessary paperwork. Fear should not be how you will get to the grocery store. If you can, get a grocery store to deliver to your home. Or ask your family to do it, a friend to pick up what you need or even someone from church. Get rid of those fears by asking for help.
There are many fears we have to put into perspective and not blow them out of all proportion. We all have more fear at night when we don’t sleep so understand those fears will not seem as bad when daylight comes. Lack of sleep promotes fears that have no bearing on the future. The one way I got through some of my silly fears was to tell myself not to fear because it probably wouldn’t happen and in the end, none of my fears ever happened and I realized I wasted a huge amount of energy and time when I could have spent it with those I loved. This is truly the best medicine for fear.
Just remember, facing fear is also about learning the best way to move forward and surviving your complications. Life truly does get better after removal although it can take up to two years to heal completely from surgery. Just lay back and let someone help you through your ordeal and then you will be there to help them when they need it.