Posted by: thedianestory | July 15, 2011

My Appt Update July 2011

Doctor Appointments – An Update

Hello friends. Some of you know that I was in the Bay Area this week, seeing my doctors to follow-up on my treatments. My first appointment was with my GI specialist to continue addressing my stomch issue – pain and difficulty eating without being sick.

When I had seen him at the end of May, he had put me on a medication to help my nerves, as he thinks there is severe neaurological damage caused from my multiple surgeries. He had said that the medication may take a full year in my system before I would notice any difference. However, after being on it for a week I was already noticing some improvement. But then right around the two week mark of taking the medicine, I had a severe reaction from the drug – to the point I couldn’t breathe. So, I had to abandon that medication. There are only three drugs in this specific “class” of meds and I’ve already been tried on the other two before. But toward the end of June my GI doctor decided to start me back one of them in the hopes that my body would accept it and benefit from it this time. Well it has been about three weeks and while I am having no major side effects from the medicine, I haven’t noticed any benefit either. So at my appointment this week he decided to double the dose of the medicine to see if I will get any benefit from a higher dose. We will wait and see but we also have to pray that a higher dose doesn’t bring on any major side effects like the first drug did.

My second appointment was with my GYN doctor who did my sugery in April. He was basically just following up to see how I’m feeling and decide where we go from here. I told him that I just now feel like I’m starting to turn a corner; the pain is less, I’m able to take less pain medication and I’m “cautiously optimistic” for the healing to continue to progress. He said he completely understood and that every woman is different and being that I’ve had such a struggle with this awful disease, he doesn’t doubt that my body may take awhile to really be calm after surgery and really feel better and benefited from the surgery. Some women, he says, have taken a full year after surgery to feel better – and that is just part of the journey of endometriosis.

I told him some days I still need my meds but I have had moments where I can say that my pain level is really at like a “1” on the 1-10 pain scale. I haven’t been able to say that in years! I also voiced my concern of not wanting to overshoot my optimism for fear that I may not get completely pain free or rid of this disease; therefore I have to be careful how high I get my hopes – and he completely agreed and understood with my line of thinking.

I asked if he thought after this last surgery if the endo would return this time or if he thinks he was able to actually rid me of this disease. He said he will “never say never” with me, given my history, but that he would be very surprised to see endo return. He said he’d expect me to have issues with adhesions more than he would a recurrence of endo, but that I would have to watch my pelvic pain carefully and keep him updated on how I’m doing so we continue to move forward in the right direction.

Right now we are running some lab work to check on hormone levels in my body so we can make sure I’m balanced properly. I’ve been having horrible headaches again recently and generally when they develop in this pattern it is because my estrogen levels are way low. He said I’m on a “pretty hefty dose” of estrogen so he would be surprised if they were low but that we would run some labs and see what was going on. We are also rechecking my Vitamin D levels because his Nurse Practitioner had lowered my dose at the end of April, down to 2,000 I.U.’S instead of 5,000 and he didn’t seem too happy about it, concerned that the level wasn’t going to stay stable. So we will see – he may increase the dosage again.

Dr. Cook also followed up with me about what the GI doctor said (he referred me to him) and when I told him what was happening and that I’m not getting any better he asked if I felt like I was just “going through the motions again” repeating what I’ve already been through. I confirmed that those were my feelings. He isn’t too happy with this GI doctor’s “plan of attack” if you will, so he is going to do some research and try to find another doctor to get me in to see. I signed a medical release form and he will send over whatever records he has that they need.

So now we wait for that appointment, get labwork done and await those results; and I continue physical therapy for pelvic floor treatments and continue to follow doctors orders to take “baby steps” and listen to my body.

I appreciate all the love, prayer and support that you all have offered. I am grateful for everything. Hope you all are having a great summer and I will continue to keep you updated!

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Responses

  1. I hope there will be more improvement in the future as you move forward. We will see what happens. Love ya Mom


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