My journey to diagnosis. A novel, pretty much.

[meResque]

I got sick in July. Prior to that, I had been fine, I thought. I have always gone to the bathroom more than other people, but it never bothered me, and my mom did too. Our "small bladders" were a family joke. I have also had sex-related UTI's since I became sexually active at 16. I had a running prescription for Macrobid, and would pop one after I had sex... I never got a UTI after I started doing this. I have had probably about 5-6 UTI'S in my life, and all were tested and came back positive. They were all excruciating immediately.

I was so excited about my life in July. My fiancee and I were planning our wedding, we had a summer full of fun planned, things had never been better for me. We talked about starting a family soon after our marriage. In mid July, I went to my primary care doctor to have my yearly pap exam and to get on birth control... I've always charted, and got my period every 26 days, and I knew I was going to get my period on our honeymoon. I didn't want that to happen, and figured I could "tweak" my schedule a little bit with the pill. I feel like the day I got that pap was the last happy day I've had.

I got the pap, and got put on the pill... my doctor told me to take 3 a day for the first 3 days to change my schedule, and then take them as usual. After the first 3 days, in which I took 9 pills, I was getting massive joint pain, and decided that it wasn't worth it. I stopped taking the pill, and the joint pain went away. I started getting a light period. Then the doctor called with the news of my pap. I was showing signs of cervical changes, and they wanted me to come in for a colposcopy/biopsy. I wasn't that shocked; I'd had the same thing happen a few years ago, and did the colpo/biopsy, and was determined to have HPV. Wait and watch was recommended, and the next time I went for another pap, I was fine. I figured the same thing would happen this time. In the days leading up to the procedure, I had been having some strange pain I hadn't been having before. An aching inside me that came and went. Sometimes it felt centered around my butt, sometimes around my vagina. I chalked it up to the effects of the massive dose of birth control. I was still spotting when I went in for the colposcopy, but they did it anyway. It hurt much worse than the time I had had it done before, but I made it through... although my fiancee, who had gone with me, almost passed out from seeing me in pain, and had to wait outside.

In the days I was waiting for the results, I was still having pain from the procedure. I also had a very traumatic incident because the medicine they use in the vagina and cervix to stop the bleeding from the biopsy all collected inside of me. It didn't come out little by little like it had the last time. Instead, I had to push it out in one huge clump in the bathtub one night. My vagina was very irritated after this, and I started having pain and discharge. When I went in to get my results, I was told I had cervical displaysia, stage I, and the cancer-causing kind of HPV. My doctor examined me, gave me antibiotics for bacterial vaginosis, and recommended I get the LEEP procedure done immediately. I took the meds, which made me very sick, and started researching the LEEP. I came to the conclusion that my health care was being mismanaged by my primary care physician, and decided to go to a gyno... the gyno that would eventually diagnose me with IC two months later.

My gyno examined me, I still had the BV. He gave me more antibiotics. He told me he thought a LEEP was going too far for CIN-I cervical displaysia, and recommended I come back for a follow-up pap in six months. I was thrilled... but still in pain. Over the course of the next few weeks, I was in and out of his office, and the office of the new primary care doctor I had switched to. It was round after round of BV that would go away and return. I also had not gotten a period again after the spotting I had coming off the pill in July. The gyno put me on 10 days of Prometrium to start a period and it didn't work. I started getting really scared. I could no longer focus on planning the wedding; my fiancee had to step in and take over. My pain was mainly focused on my rectal area at this point, although the BV was certainly uncomfortable. I called my gyno's office one day and DEMANDED an ultrasound. When they got me in for one, they found a cyst on each ovary. Simple, fluid-filled ones, one 2cm, and the other 4cm. My doctor said this COULD be causing my pain, and that he thought going on the pill would help. I was still attributing all of my pain to the massive doses of the pill I had had in July, but went back on it warily. I was willing to do anything to make the pain stop. He put me on the pill, and scheduled me for another ultrasound on October 19, six weeks later, to see how the cysts were doing. My new primary care doctor put me on Vicoden to help with the pain. She has been amazing through all of this, so caring and wanting me out of pain. She told me to call her if I needed more pain meds, and also gave me metrogel for the latest round of BV, as well as an antibiotic for a UTI I had... felt no symptoms, and was really shocked I had one... I had been in so much pain that my fiancee and I hadn't had sex in weeks.

I got married. What I mostly remember from the wedding is the pain. It hurt to sit, it hurt to stand, it hurt to dance. I took Vicoden every 6 hours that day. I was terrified of leaving town to go to Mexico for the honeymoon. At this point, I hadn't gone longer than a week between doctor's visits in almost two months. What would I do when I was in Mexico for 10 days? What if I needed medical attention? It was pretty much a disaster. The two plane rides left me in agony, but we made it. We managed to have good mornings, where I didn't hurt as much. I discovered a Vicoden and a mimosa really took the edge off! As did being in water. The pool, the ocean, being weightless took almost all of the pain away. I started spotting... strange bleeding I had never seen before, as well as other strange discharge. I was terrified. I still had a week on the pill before I was supposed to bleed. I cried, and cried, and hurt. My husband was amazing. He was constantly telling me to just say the word, and we could get a flight out. He pretended like all HE wanted to do was lay in bed and watch movies with me. Like HE only wanted room service, and had no desire to go to any of the restaurants. I was so relieved the day it was time to go home. The plane ride from Cozumel to Dallas was excruciating. I was out of Vicoden, and sitting and not being able to move left my butt/tailbone area feeling HORRIBLE. My husband suggested we skip the flight back to Kansas City, and rent a car. He thought being able to move around would decrease my pain. We made the 8 hour drive back to KC, and I did feel much better. I curled up in the backseat for a few hours.

When we got back, I started my period. The first one I had had since July. It was right on time, and pretty normal. I had a largish clot, which I had never had before, but I chalked it up to not having had a period in months. I was so hopeful that my pain would end with the period. It didn't. I called and told my gyno that I needed another ultrasound right away. I was thinking I most likely had cancer at this point. I wasn't going to wait until October 19th to be seen. When I got the ultrasound, everything looked the same. The cysts were still there, and hadn't changed at all. My gyno looked at me, and he was sad, too. He felt really bad. He said it was probably time to do a laparoscopy, to see if he could figure out why I was having so much pain still. He scheduled the procedure for later in the week, and gave me a prescription for Percocet. All I could do was cry in his office. I was so scared.

The laparoscopy went fine. He found I did have some endomitriosis, and cauterized it. I didn't get to talk to him after the surgery, but he told my husband that he didn't think the small amount of endo he had found could be causing this level of pain. He left the cysts. After the surgery... I felt AMAZING. For a day and a half, I was giddy... I had no pain, other than the incisions and some gas from the procedure. I KNEW the endo was the cause of all my pain, and I was SO EXCITED that I could get on with my life. Then the pain came back. Just like it was before. By this point, I had found a few things that brought me relief... showers and squatting. I hadn't been anywhere without my heating pad in months. I looked forward to the end of every day... I have taken Ambien to sleep for the past few years, and about 10 minutes after I take it... without fail... my pain would disappear.

I went back to the gyno, and told him it hadn't worked. He was almost as upset as I was. He told me my pain had likely been masked that first day and a half by risidual effects of the general anesthesia. He brought up my PCOS. I was shocked, because he hadn't mentioned that I had PCOS to my husband after the surgery. He said it would make it a lot harder for me to have kids. I sobbed. All I've ever wanted was to be a mother. He told me since the pill didn't seem to be helping, that I could go off of it at the end of this cycle and start trying to conceive. All I could do was laugh. We haven't had sex in months, and I couldn't comprehend trying. He scheduled me for a CT scan of my abdomen and pelvis... as well as a potassium sensitivity test. My mother had previously suggested that she thought my doctor should look into IC... one of her friends had it, and she thought it might have been the cause of everything. I dismissed it... I pee a lot, but I hadn't had any bladder pain, just lower back, and what seemed to be pain near my rectum. My gyno brought it up and said it was worth looking into. That if my CT came back normal, he truly had no idea what else to look into. My CT was normal, and we did the potassium test later that day.

I have always hated being catheterized. I had surgery for scoliosis when I was 15, and the catheterization was awful for me. I was dreading the test. The water didn't hurt, and it didn't make me feel like I had to pee. The potassium didn't make me feel like I had to pee either... but the pain was sudden, and pretty bad. I sobbed, and asked him to take it out. He told me he couldn't, that he had to take the potassium out first, and put lidocain and heparin in, or I would be in agony. I laid there while he did it with tears running down my face. From reading here in the last few days, I'm so glad he wouldn't take it out when I asked. He was confused by the test results. He said I had a definite positive because of the pain, but didn't know what to think because the test didn't make me feel like I had to pee, and the pain was NOT in the same place that I had been having pain all along. The lidocain did nothing to diminish the pain I had been having. He wrote me prescriptions for Elmiron, and a musle relaxer. He thought maybe Ambien was causing a musle relaxing effect, and that's why it didn't hurt after I took it. He scheduled me a follow appointment for the following Tuesday (two days from now) to see how I felt after the muscle relaxer and to talk about beginning weekly instillations into my bladder for 6 weeks. He didn't, for the record, mention anything about the IC diet. He did mention that PT might be a good idea.

The first time after I took the muscle relaxer... instant relief. The pain was gone. I couldn't stay awake, because it made me so tired... but I didn't care. Then, of course, what had always happened, happened again. The pain came back. A LOT less this time, but I am still in pain. I describe it almost like a toothache in my butt. Plus, I of course have BV again.

That's where I'm at right now. I haven't started the Elmiron yet. I would really like to transfer my care to a urogynecology center that is recommended on this site. I tried to call Friday, but no one ever answered, and I was on a conference call when they called back. Thank God my boss has been so understanding. She suggested I take a medical leave, but we can't afford that. She then told me all we needed to do was file with HR and she would allow me to work full-time from home for as long as I need to. I'm going to try to work from the office as much as I can (40 minute drive from my house, which is awful), but use working from home as a backup. I've been on the diet, eating only from the okay column, for two days. Evian is freaking expensive! I will start the Elmiron after I talk to the uro.

Here are my questions, although I'm sure no one made it this far.

Why am I having no bladder pain, but instead butt and lower back pain? I'm thinking maybe my pelvic floor is messed up as well? I'm guessing my gyno also suspects that, hence the PT recommendation. I'm also having issues with my stream stopping and having to restart it, which also sounds like PFD?

How mild/severe does it sound like my IC is? I pee about 10 times a day, not at all at night. I am able to sleep 8-10 hours without waking up to pee. I do feel some urgency, but not a ton. I generally can go 3-5 hours without having to pee if I haven't been drinking a ton. If I've been drinking a lot though... that does increase a lot. Maybe 1 or 2 times an hour. I don't have, as far as I can tell, any actual BLADDER pain. My urethra doesn't hurt either. I just have the damn butt pain. It's a pain in the butt... ha. Sorry!

How do I get rid of this BV?? LOL. I'm sure no one has the answer to that, just thought I'd throw it out there.

I see quite a few people have gone on to have children after diagnosis. I know that the endomitriosis and PCOS will very much complicate things. I'm so devastated. I guess I don't really have a question here. I just feel... broken. Mentally and physically. I think the low probability of me getting to be a mother is worse than all of this put together. I have a lovely 7 year old stepdaughter now... but it's just not the same.

Thank you so much for reading some of or all of this. I've already gained so much knowledge and hope from reading this board. It's so nice to know that I'm not alone... and I feel so lucky that this has been handled so well by my gyno... 3 months after symptoms seems to be pretty good compared to some. "Nice" to meet you all.

Sara (28 yrs old)

[ICNDonna]

to the IC Network. I'm glad you found us.

It sounds like you have really been living in a nightmare. It does sound like you could have pelvic floor dysfunction (PFD) --- hopefully the physical therapist will be able to help.

It's still very possible you will have children --- lots of our members have babies in spite of having IC. Once you get your symptoms under control, you will be able to get back to a more normal life.

Sending healing thoughts,
Donna

[meResque]

Here's an update on how I'm doing... what a difference a month can make!

I've now been on Elmiron for about 3 weeks... not enough time to know if it's going to help or not, obviously. I'm so thankful that it costs only $15 a month copay for me to take. I've read that it costs other people much more.

I've been on the diet for a month.

I've been to 4 PT sessions for my pelvic floor.

And... I feel amazing.

It's really been in the last week that I've noticed a huge change. Last Monday, I sat at my desk at work after PT crying I was in so much pain. Tuesday... I woke up a whole new person. I've been sticking to the diet religiously, doing every exercise my physical therapist has told me to do several times a day... and I haven't needed a Vicoden since last Monday. I haven't even gotten out my heating pad to sit on today, because I haven't needed it. I HAVEN'T NOT NEEDED MY HEATING PAD SINCE JULY.

So, so far, so good. I still haven't gotten in to see a uro, but my gynecologist seems to have a handle on how to manage IC. I'm still keeping my uro appointment on Dec 15th, because I hear he's great, and I want an established relationship just in case things change.

I feel happy for the first time in 4 months.