not much to report

Sorry for the lag in posting, I hadn't been feeling too well. Hoping that things are all straightened out now, after a 10 day period. I start my new pills on Sunday. I really hope it doesn't make me sick. I can't handle the morning-like sickness that bcp often gives me. I have started my new meds, but haven't seen a difference yet, oh except for side effects. One of them gives me horrible acid reflux and I mean horrible, so I will likely be starting a new med for that. The other which causes constipation. I knew this had been an issue, but didn't realise why until I saw a commercial for the med today. It mentioned constipation 3 times in the ad, guessing it must be a pretty common side effect. Oh the joys of meds.

2nd appt

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!

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!