What a week...

Once again another crazy week in our household... yes, it was nice to have a long weekend over Labor Day, but it made things at work even more crazy than usual....

Becca has had a pretty crappy time of it lately healthwise.... She complained last week of having pain in her lower back, and we were afraid that it was her kidneys because she's on a pretty high does of motrin for her abdominal pain. Luckily, it wasn't that.... but it was a lower lumbar strain. Our pediatrician referred her to a massage therapist and she felt that that might help. So, we made an appointment with a woman that a friend recommended. She went on Wednesday. She spent over an hour working on her back and her head.

We gave her Becca's whole medical history (boy did that take some time!) from her daily Headaches which are going on almost 3 years now, to her abdominal pain since last October, to them finding her bladder cancer in November, being diagnosed with PCOS in January, to the continued abdominal pain.... anyway, she tried several types of deep massage that she hopes may help her. She worked on her back, abdomen (because there are back muscles that actually can cause pain in the abdomen) and her neck and head.

She warned us that she'd feel like she got hit by a Mack truck 24-48 hours after she worked on her, and she was right.... Becca came to my office after work Thursday in tears. Her head pain was about 8 and she couldn't even think straight. She was supposed to go to work, but she called in sick and went home... she couldn't make it to school the next day either because the head pain was so bad. She also could barely move her neck. Luckily by Friday afternoon, things started to ease up and she started feeling better.

This morning, she said her head is pretty much back to normal (normal meaning pain but tolerable) but that her abdominal pain was actually a bit better and the back pain was gone! So I guess it was worth it, besides the two days of hell she went through.....

Unfortunately, her therapist had emergency gall bladder surgery Saturday morning! Can you believe it??? Not sure what we are going to do now.... We were supposed to call her Monday and let her know how things were going.

Please keep Becca in your prayers on Tuesday as we head to the Urological Oncologist for Becca's second bladder scope since her surgery. We needs lots of prayers that there is no sign of the cancer returning!!!!

Hope you all have a great week!

Frustration...

I took Becca back to Magee last night, to the ER....The CT scan she had last week showed 2 - 2 cm cysts on each ovary, so we are assuming that is what is causing the pain. My Pediatrician seemed to think these cysts were something that needed to be taken care of (removed ?) since she's still in so much pain. So, after a long weekend of her suffering and being in pain, I left a message for her gyne at Magee first thing Monday morning. They finally called me back at 2:30 to tell me the gyne was out of town for 3 weeks and that I really needed to call her Endocrinologist about the cysts anyway! So... I called that office and had to leave a message. They finally called me back about 3:00 to tell me that the doctor was out of town until Friday!

The nurse was very supportive and understood Becca's situation and she said that if it were her daughter, she would take her to the ER at Magee and tell them that she has severe abdominal pain and that they would be able to help us.... So I call my Ped back, just to see if he thinks it's a good idea (I have a very good relationship with him) and he said that definitely, that is what I should do, he backs me on it 100%. So, at 4:00, we're heading to Magee with bags packed thinking we may have to stay...

We get there, and after a 2 hour wait (even though there were only two women in the ER waiting room!!!), we get in to see a doctor. She pretty much tells us that abdominal pain is to be expected with PCOS and Becca just has to get used to it. She said she will continue to have more cysts come and go, it's just normal with her condition.

WHAT???? There's nothing you can do??? She says just give her 800 mg of ibeprofin every 4-6 hours and she gave us a script for Vicoden. Tells us to get back in touch with our Endocrinologist and fill him in when he gets back.

I realize she's not an Endocrinologist and just an ER doctor, but this is at a woman's hospital! We were hoping they could do something for her besides give her even more drugs and send us home....

So.... is this truly what we can expect with PCOS??? Will she just have to learn to live with the pain of cysts until she gets her PCOS under control with her Metformin (which they say could take from 6 months to a year to get her levels worked out) and weight loss? or will it EVER be under control?

I don't know the answers, but these are the questions I'll be asking her Endocrinologist when we see him.... I just can't believe she has to learn to live with this pain....

Why does this concern me?

In November of 2006, my 16 year old daughter, Becca, began complaining of lower abdominal pain. She very rarely had a period, and never had cramps, and this occurred during a period, so we assumed that she was having cramps for the first time with her period. After a week of the pain not letting up, we went to our Pediatrician, who did a pelvic x-ray, which came back fine. He then scheduled us for a sonogram of her ovaries. The earliest appointment was weeks away, and the pain was continuing, so we went to the ER about the abdominal pain.

They did a sonogram, and while her ovaries were enlarged, their real concern was that they had found a tumor in her bladder, that ended up being cancer. That's a whole other story that I won't get into here, but the tumor was removed and had not spread, and she is now doing well in that area.

However, after recovering from that surgery, she still had this lower abdominal pain, and had not had another period. We went from one doctor to another, trying to figure out the cause, till we finally saw a Urologist/Gynecologist at Magee Hospital in Pittsburgh.

When we described all of Becca's symptoms, she immediately told us that she believed Becca had PCOS. She had a vaginal ultrasound immediately and they ran lots of blood tests. She then referred us to an Endocrinologist, also at Magee, and wanted us to see him right away. We got in two days later, and after reviewing her blood work and the ultrasound, he diagnosed her with PCOS.

So this blog will be a bit of information about Becca and her experiences with PCOS, and an information site to help get the word about about this syndrome. There isn't enough information out there, and I want more doctors and women to understand this condition.