Yesterday I had my second visit at the new dr's office. They are really great. Everyone is very kind. I annoyingly had to pay my deductible at the appointment, and I was not expecting that. They did what they call PMR (pelvic muscle retraining). This is a test to see how much in spasm and how tense my pelvic muscles are. Ok, again this is TMI and I can't believe I'm sharing this, but WTHeck! So they measure this by placing 2 probes, neither of which are in the bladder, I'll let you figure it out. SO SO not fun. And the fact that I had to pay for that! EEEEK!!! I still am not over it:) But, this was a good test to have done. It gave important information. The average woman has a muscle pressure (I guess that is what you call it?) of 5 when relaxing. When I was relaxing I ranged from 12-13, in other words very tense. It makes sense. I don't even have a clue I am doing this. I have just gotten in a terrible habit of it, from years of pelvic pain and holding my urine. Honestly, I was shocked when she told me the number. I was trying to think of beaches ect, really relaxing, or so I thought. Basically, some people hold their tension in their necks, I hold mine in my crotch! What can I say:) Anyway, they do a variety of "exercises" if you will. After that, I got my pressure down to a 9. Still high, but an improvement. After that, I had my second bladder instillation. It hurt. I hope I can get used to that soon.
Then the dr came in with a bag full of estrogen. The plan was that I would take it for 4 months along with my regular bcps. Then we got to talking. He pretty much thinks that my body is terribly used to the pill and that my liver now metabolizes it faster, thus the breakthrough bleeding, all the time. We decided that it might be time that I try a new pill, a much stronger pill, with the higher dose of estrogen built in. I'm sure it will make me terribly sick! I am going to go ahead and let myself even out and have a full cycle, then not this Sunday, but the next, start the new pills. So keep me in you thoughts and prayers over the next couple of weeks as it may be rough. We also discussed, that after being on IC meds for a couple of months, perhaps I see what having a cycle each month is like. So, that is a possibility.
I went to the pharmacy today. Meds are outrageously expensive, so I will be having to mail order them. But, I went ahead and got 2 weeks worth so I can start. I will be starting the IC meds tomorrow. I also will call my local gyn and see what he says for a plan for the instillation. Hoping to be seeing some major changes soon!
Showing posts with label IC. Show all posts
Showing posts with label IC. Show all posts
Wednesday, June 10, 2009
Monday, June 8, 2009
The appointment
Today was the day. I was, of course, very nervous. Woke up with my usual anxious nausea. We had lunch at Boston's (delicious g free pizza) before the appointment, which was just what I needed. I walked in the office to read a sign that nicely said, "no children aloud." I of course had my little man (and hubby) with me. We came from 3 hours away, so it's not like I could just leave him with a friend. I asked about it, they said we could leave him with an operator (yeah right). The receptionist asked and said that they could come in after the exam.
This office caters to Spanish speaking patients as my dr was the only Spanish speaking ob in the area when he stared. He has since devoted time to providing quality care and understanding for Spanish speaking women. While I think this is wonderful, it did make it a little difficult. It is clear that Spanish is the first language for many of the office staff. The PA who I worked with a lot had a very strong accent which sometimes made it difficult to communicate. The doctor himself was very easy to understand as he has been in Texas all his life and did not have an accient. This was very much a relief.
He said I was textbook IC. He talked about the relationship between IC and endo and even gave me an article the referred to the 2 as the evil twins. He did an exam which was uber painful. He said the exam was abnormal in my inability to tolerate certain things, and typical of IC. He was very kind and knowledgeable, the most knowledgeable on IC of anyone I've ever seen. He explained how he believes it is a form of an allergy and hopes that I can pinpoint my trigger food.
The only thing he said that I didn't agree with was about infertility. He was discussing lupron and suggested that perhaps it isn't the miracle drug so many drs believe it to be (with this I agree). He then said "does endo cause infertility? points to Cooper I think not." With that I don't agree. I said, "well it certainly took some help." He replied that I told him I was anovulatory, which I was due to lupron, but without it would I have gotten pregnant. Who knows? I believe that endo most certainly can cause infertilty. It did for me. Because of endo I was on lupron, because of lupron I was anovulatory. I connect the 2, he does not. Whatever. This really isn't an issue at all. We will just agree to disagree. I still believe some of my cpp is endo, but agree that the IC is a huge contributing factor as well.
I came in with pain around a 6 on the pain scale. I was nervous, knowing I was going to have a pelvic exam, which set me into spasm, causing pain. Some people get a belly ache, I get cramps...go figure. The pain turned out to be a good thing. Since I was suffering, he wanted to go ahead and do a bladder instillation as a test of sorts. They cathed me (oh my gosh how it hurt), emptied my bladder, then injected the medicine. By the time this was over I was at a 7 or an 8, had trouble walking out of the office and made hubby drive. The dr also gave me a script for Elmeron and Vesacare. I will have 9 instillation to begin and take these meds daily. He called this evening to see if my pain had eased. It had, making the test positive, and getting me the official diagnoses. I told him that I was still at a 3-4, what felt like uterine cramping, likely due to the breakthrough that is heavier now. He said he would give me a script for estrogen (oh how I hate estrace!) that what hopefully clear that up. I go in again in the morning for another istillation and a muscle test to see what kind of spasms I am having. I'm bracing for it.
So I know have quite the med list. But, I am hoping it will give me pain free days. If it does, then it is worth it. I am so glad to have found this dr. I know that I would be no where near this kind of help anywhere else. It is truly a blessing. I told him I was sad to get another diagnoses. He said he understood, but in the over 500 cases he has treated, most get substantial relief. I will be starting an elimination diet avoiding the foods on the list. Hoping I am able to pinpoint a specific soon. I'm feeling hopeful today, and blessed. Things are good!
This office caters to Spanish speaking patients as my dr was the only Spanish speaking ob in the area when he stared. He has since devoted time to providing quality care and understanding for Spanish speaking women. While I think this is wonderful, it did make it a little difficult. It is clear that Spanish is the first language for many of the office staff. The PA who I worked with a lot had a very strong accent which sometimes made it difficult to communicate. The doctor himself was very easy to understand as he has been in Texas all his life and did not have an accient. This was very much a relief.
He said I was textbook IC. He talked about the relationship between IC and endo and even gave me an article the referred to the 2 as the evil twins. He did an exam which was uber painful. He said the exam was abnormal in my inability to tolerate certain things, and typical of IC. He was very kind and knowledgeable, the most knowledgeable on IC of anyone I've ever seen. He explained how he believes it is a form of an allergy and hopes that I can pinpoint my trigger food.
The only thing he said that I didn't agree with was about infertility. He was discussing lupron and suggested that perhaps it isn't the miracle drug so many drs believe it to be (with this I agree). He then said "does endo cause infertility? points to Cooper I think not." With that I don't agree. I said, "well it certainly took some help." He replied that I told him I was anovulatory, which I was due to lupron, but without it would I have gotten pregnant. Who knows? I believe that endo most certainly can cause infertilty. It did for me. Because of endo I was on lupron, because of lupron I was anovulatory. I connect the 2, he does not. Whatever. This really isn't an issue at all. We will just agree to disagree. I still believe some of my cpp is endo, but agree that the IC is a huge contributing factor as well.
I came in with pain around a 6 on the pain scale. I was nervous, knowing I was going to have a pelvic exam, which set me into spasm, causing pain. Some people get a belly ache, I get cramps...go figure. The pain turned out to be a good thing. Since I was suffering, he wanted to go ahead and do a bladder instillation as a test of sorts. They cathed me (oh my gosh how it hurt), emptied my bladder, then injected the medicine. By the time this was over I was at a 7 or an 8, had trouble walking out of the office and made hubby drive. The dr also gave me a script for Elmeron and Vesacare. I will have 9 instillation to begin and take these meds daily. He called this evening to see if my pain had eased. It had, making the test positive, and getting me the official diagnoses. I told him that I was still at a 3-4, what felt like uterine cramping, likely due to the breakthrough that is heavier now. He said he would give me a script for estrogen (oh how I hate estrace!) that what hopefully clear that up. I go in again in the morning for another istillation and a muscle test to see what kind of spasms I am having. I'm bracing for it.
So I know have quite the med list. But, I am hoping it will give me pain free days. If it does, then it is worth it. I am so glad to have found this dr. I know that I would be no where near this kind of help anywhere else. It is truly a blessing. I told him I was sad to get another diagnoses. He said he understood, but in the over 500 cases he has treated, most get substantial relief. I will be starting an elimination diet avoiding the foods on the list. Hoping I am able to pinpoint a specific soon. I'm feeling hopeful today, and blessed. Things are good!
Tuesday, May 12, 2009
Interesting
So my dear friend Erica shared this link with me today, and I thought it was interesting enough to share with you. It confirms it for me about the Celiac thing. I mean I just have too many symptoms for it to be anything else. Check it out if your interested
http://www.celiac.com/articles/21636/1/Gluten-Sensitivity-and-Bladder-Disease/Page1.html
Also, I have another endo friend who is in need of thoughts and prayers. Jenifer is struggling right now, so just think of her. This endo is an aweful disease. It can easily control you life and take away your spirit. She is much to precous for that! Hang in there girl. I know it sucks and sure aint easy, but I'm praying for you.
My birthday is tommorow, and my wish is for a pain free day. Will you wish it for me too?
http://www.celiac.com/articles/21636/1/Gluten-Sensitivity-and-Bladder-Disease/Page1.html
Also, I have another endo friend who is in need of thoughts and prayers. Jenifer is struggling right now, so just think of her. This endo is an aweful disease. It can easily control you life and take away your spirit. She is much to precous for that! Hang in there girl. I know it sucks and sure aint easy, but I'm praying for you.
My birthday is tommorow, and my wish is for a pain free day. Will you wish it for me too?
Friday, May 8, 2009
Where I am now
Cooper's life has been filled with trials we never could have imagined. He is one tough little boy who has been through so much, but seems that he is finally making his way over the hill and turning into a healthy, thriving boy. I thank God everyday for healing our son the way He has. I finally have some time to look at my own health now.
My cycle was suppressed while nursing Cooper; it was so nice, but I still had pain. It varied from time to time, but there was one particularly awful time when I worried I might have an ectopic pregnancy. Not sure what that was about. I got a shot of toridal and quickly recovered. I have seen my RE once since delivering. He told me he wanted for me to be either pregnant, trying to get pregnant, or completely suppressed. He never wanted my cycling, because if I am, it is inevitable, endo will grow. Of course I believe that the Lord is capable of healing me of this, but am fulling accepting if He does not. I asked about our future of conceiving and if he believed I could conceive on my own. He said, it would be fine to try a few months on our own, but would put me back on injectables in a heartbeat. As soon as I got my cycle back after weaning Cooper, I started on continuous bcp. I have only had one cycle since and it was difficult.
During my pregnancy, I had a boat load of issues. I had pre term contractions early on due to a kidney stone. It blocked my kidney at 31w, and I was forced to have a stint placed inorder to renew kidney function. It was awful. Once delivered, I had lithotripsy to break up the stone, then had the stint removed. My bladder has never been the same. I had multiple occasions with symptoms of bladder infections (blood in the urine, flank pain, ect) but no infection present. I would empty my bladder, stand up, and need to go again. I can go some time without a bathroom break, but once I go, I need to go over and over. I have pain often, with all sorts of activities. I stumbled across IC, and began to see how I fit all the symptoms. I mentioned it to my obgyn, and he kind of wrote it off at the time. He suggested I try pelvic physical therapy to retrain my muscles and bladder. I only went a few times; I think it could have helped, but it was hard to find the time with an often sick baby.
I have come to realize that I have some degree of gluten intolerance. I believe it is Celiac, but am not officially diagnosed. I am completely gluten free and vastly dairy free now, which can be helpful for endo. My pain has recently gotten increasingly worse, and I haven't had a lap since Oct 06, so I decided it was time to schedule one and see what is going on. Before I could get it scheduled, I had a bought with severe pain. They had me go for a urinalysis. It came back with lots of blood present. That explained it, I had a raging infection. But the culture came back clean. There was no explanation for the blood. I told my obgyn and asked if this could be from endo on the bladder. He said it was possible, but felt that it was more likely from irritation in the bladder, aka IC. He is wanting to find me a urogyn. I am tentatively scheduled for a lap on June 11, but have an appointment on May 22, so things could change.
That's where I am now. I'm in some sort of pain every day. I can't wait for that appointment. I am trying to learn what I can about IC, and work through my emotions here. It is hard to think of another diagnoses that doesn't have a cure. It is also hard knowing I can't just get rid of my bladder as I plan to with my uterus and ovaries. The good thing is, I far as I know, this won't further affect my fertility, but I don't know what our plans are with that anyhow. That is for another post though. I'm trying to deal, and remember that God is sovereign. That this is only for a season, even if that season last the rest of my life. I will one day be healed. I have to remember that. That is what keeps me going.
My cycle was suppressed while nursing Cooper; it was so nice, but I still had pain. It varied from time to time, but there was one particularly awful time when I worried I might have an ectopic pregnancy. Not sure what that was about. I got a shot of toridal and quickly recovered. I have seen my RE once since delivering. He told me he wanted for me to be either pregnant, trying to get pregnant, or completely suppressed. He never wanted my cycling, because if I am, it is inevitable, endo will grow. Of course I believe that the Lord is capable of healing me of this, but am fulling accepting if He does not. I asked about our future of conceiving and if he believed I could conceive on my own. He said, it would be fine to try a few months on our own, but would put me back on injectables in a heartbeat. As soon as I got my cycle back after weaning Cooper, I started on continuous bcp. I have only had one cycle since and it was difficult.
During my pregnancy, I had a boat load of issues. I had pre term contractions early on due to a kidney stone. It blocked my kidney at 31w, and I was forced to have a stint placed inorder to renew kidney function. It was awful. Once delivered, I had lithotripsy to break up the stone, then had the stint removed. My bladder has never been the same. I had multiple occasions with symptoms of bladder infections (blood in the urine, flank pain, ect) but no infection present. I would empty my bladder, stand up, and need to go again. I can go some time without a bathroom break, but once I go, I need to go over and over. I have pain often, with all sorts of activities. I stumbled across IC, and began to see how I fit all the symptoms. I mentioned it to my obgyn, and he kind of wrote it off at the time. He suggested I try pelvic physical therapy to retrain my muscles and bladder. I only went a few times; I think it could have helped, but it was hard to find the time with an often sick baby.
I have come to realize that I have some degree of gluten intolerance. I believe it is Celiac, but am not officially diagnosed. I am completely gluten free and vastly dairy free now, which can be helpful for endo. My pain has recently gotten increasingly worse, and I haven't had a lap since Oct 06, so I decided it was time to schedule one and see what is going on. Before I could get it scheduled, I had a bought with severe pain. They had me go for a urinalysis. It came back with lots of blood present. That explained it, I had a raging infection. But the culture came back clean. There was no explanation for the blood. I told my obgyn and asked if this could be from endo on the bladder. He said it was possible, but felt that it was more likely from irritation in the bladder, aka IC. He is wanting to find me a urogyn. I am tentatively scheduled for a lap on June 11, but have an appointment on May 22, so things could change.
That's where I am now. I'm in some sort of pain every day. I can't wait for that appointment. I am trying to learn what I can about IC, and work through my emotions here. It is hard to think of another diagnoses that doesn't have a cure. It is also hard knowing I can't just get rid of my bladder as I plan to with my uterus and ovaries. The good thing is, I far as I know, this won't further affect my fertility, but I don't know what our plans are with that anyhow. That is for another post though. I'm trying to deal, and remember that God is sovereign. That this is only for a season, even if that season last the rest of my life. I will one day be healed. I have to remember that. That is what keeps me going.
Subscribe to:
Posts (Atom)