Basically I have to decide if I want to live with this bleeding or go through a pretty major surgery with a 25% chance of being worse off (like loosing the function of my legs), or a 75% chance that he can find out where I am really bleeding from and can actually stop it.
He does not want me to make any decisions right now, said he would not consider doing the surgery for 3/4 months at this point anyway because he wants to see if the bleeding will decrease some more.
Oh Melinda,, my heart goes out to you… wow that is really something to think about, I am sure you have thought about getting a second opinion. I will pray for you. hugs Sabina:)
What did he see on the CT scan? How do you feel about your doctor’s diagnosis? How is your blood count? Are you in any pain? Maybe, it will slow down and go away. I know I asked a lot of questions, so only answer them if you feel like it. I will be praying for you. Love, Jenny
Doc still could not see anything of significance which is why he is so frustrated. My blood count ironically is holding at about an 10/11 and they feel it will maintain since it has for the last 5 weeks.
Pain: Yes I am in a lot of pain that cannot be controlled which I am extremely frustrated about as that has not been addressed or I may not have voiced it enough knowing me:) I deal with chronic pain all of the time and especially in this particular area.
Diagnosis: I understand him feeling at a loss, he did not do my initial surgery so it is hard for him to really know what and how things were done.
2nd opinion: Yes if the bleeding does not go down anymore than where I am at which is more bleeding than is normal for me, then we are going to contact my original gyn onco as she knows what was done and had even originally told us that she would not be surprised if I would need surgery in 3 to 4 years due to what she and the plastic surgeon had to do because they were the last two to work on me and I had been under for so long that they really rushed…
I believe the Insurance plan I am on with Medicare actually allows me to go anywhere as long as the doctor accepts my supplement plan for medicare which is Humana, and I know my sister would help pay for seeing my original gyn onco as well as the trip to Memphis, TN.
Thank you for your prayers Jenny as we have sent out prayer requests for the bleeding to stop and for God to intervene and heal whatever is going on.
Loves and Hugs,
Melinda, I am glad your bloodwork is staying at a level rate, but I am so sorry you are in pain. I know you probably have pain med, but that doesn’t always help. I am also so glad you have your sister to help you pay for the transportation if you need to fly to Memphis for the second surgery. My taxotere is starting to kick in today, so I don’t feel so great. I have been thinking about you. Love, Jenny
How frustrating and scary for you!
Oh Melinda, I am soooo sorry that you are having such pain and frustration about your bleeding. (Its got to be awful having that to deal with all the time). It is really odd that they cannot pin point where its coming from. Praise the Lord your blood counts are holding steady (a small blessing). I am praying for you daily and also asking God to help you be strong and just cover you with his love and peace. I love you and know many others do and we will be there to help you get through this!
Melinda, my family and I will be praying for you. I know how frustrating it can be to be in constant pain. Do you have a pain management specialist? There is no reason for you to be going thru pain on top of this very stressful situation with your uncontrolled bleeding. Please get yourself some relief in the pain area. I too was not one to vocal how truly bad I was feeling. Not sure why we do that? Shame? Stigma that goes with pain meds? Whatever the reason…..you have gone thru hell and back and if anyone is deserving of some type of relief, it’s you. All my love and prayers. Keep fighting! xoxo
Wow. Seconding the comments about getting a second opinion and it sounds like a visit to Tennessee should be on your list as soon as possible. Maybe you could just get in the car and start driving! Whatever it takes to end this nightmare…
Melinda…all I can do is offer my prayers and hope the bleeding goes away on its own so you don’t have to make such a difficult decision.
Melinda; I know you must be so frustrated with everything that presents to you each and every day. I don’t know anyone who could deal with constant bleeding without be scared and feeling a little helpless. I guess when one changes surgeons the problem is, does each surgeon communicate with one another. I think in your case you should encourage it so that they can come up with an answer before 3/4 months is up. I think it is abomnibal that you are in a NO ZONE situation. This is not how a person who is constantly bleeding should be treated, pain or no pain. About that pain, ever consider, medical marijuana? I’m not sure if you have that in the USA but it is legal up here in Canada if you get a Dr. to approve it. I have heard it is the best pain med on the market. Just a thought.
Dear Melinda,I am sorry to hear about your situation.I think that your doctor should not wait 3/4 moths to do something.They sholud start calling your previous doctor who warned you that this might happen in 4-5 years and ask their opinion why they said that.That way they can have a plan of care that is appropriate to the situation.I remember that i have vaginal bleeding and they trated it as dryness due to radiation.it turned out to be vaginal ca after 3 monthe of hormone therapy which made it more alive.I end up with a big operation,I have neo-bladder/repair of vagina which is very uncomfortable.The problem is if the bleeding stopped they will continue to obseve you but still not knowing what cause it in the first place.If your old team can help and give you the correct answer I think it is a great load off your mind.I’m praying that your team will find a solution soon and that your pain will be addressed the way it should be. Hugs and prayers
Sometimes the “wait and see” approach is the best one. A decision that comes slowly and persistently is often one we can trust, too. This is a big one, I can certainly appreciate it.
May you be blessed and find peace in this process.
Melinda, I cannot begin to know how you are feeling. To make this type of decision has to be the hardest thing. The only thing I can say is put faith in your doctors, and do what you feel is right. Sit and reach down deep, you will answer your own question.
I am thinking of you and praying for you.
You are an inspiration and though I don’t know you well think you are the loveliest person.
I send you hugs and prayers.
God Bless You, Melinda! I’m so sorry you are dealing with all of this. Hugs to you, my friend.
Happy Born Day to you!
I hope you have a very Happy Birthday. I know it is early but I did not want to forget! This WEdnesday is a very hectic day for me.
Hugs and good wishes, Sandyjo