New Here--An Introduction with Questions...

Hi. My name is Ayah. I am 28 and live near St. Louis. To be honest, I'm not sure if I belong here, but I knew that the people here would understand what I am going through right now and no one I know would.

I guess my story starts when I was 13. My period has always been weird. My cycle ranges from 20 to 60 days with very severe pain at the onset of menses. At first my mother blew it off because she thought it was a question of growing up and/or getting used to the pain. When I was 15 she decided that it had been too long and the doctor visits started. Eventually it was discovered that I had compound cysts which were growing and rupturing every month. We were told to consider oophorectomy at that time, but because I was so young we decided to opt for pain meds and birth control.

I was never really great at keeping up with annual appointments and would often skip a year, but my paps always came back just fine. Until 2 weeks ago, my last pap was 2 years ago. About 1 year ago I started having cramping between my periods, but because of the problems in the past I attributed it to ovulation or that "about to start" feeling and never really gave it much thought. 2 weeks ago, I had to get started with a new primary care doctor because of new insurance. I went in unaware that I was going to have a pap, but when the CMA asked if I was having one I figured I may as well and said yes. I also had a lot of blood work done for various things.

I knew the blood work would come back with a few positives and would require follow-up, but I wasn't concerned about the pap at all. Nevertheless, I started having nightmares about fighting cancer and having a hysterectomy. Last Tuesday my doctor called. Apparently, my pap came back HSIL. They said I needed a biopsy right away and scheduled me for an appointment which is taking place in 2 days.

It might sound stupid, but something inside of me is saying that this biopsy isn't going to go well. I don't know if it is just that I'm scared or if it is my body preparing me for what it knows that I don't yet. My dad said that he knew before his biopsy came back that it was positive and he was basically symptom free. I know that only 2% of women who have an HSIL pap actually have cervical cancer. Logically I know that it is highly unlikely that I have it... but I have a feeling. On top of which, I think that my history of ovarian cysts combined with this test result will result in a recommendation for surgery even without a positive biopsy. My mom and husband both think that that would be the smart thing for me to do if it is one of my options.

I am 2 days pre-biopsy and every little pain--the ones that I used to think are normal--makes me want to cry. I know that I don't actually know anything yet and I hope that I am not being horrible and insensitive by coming here right now, but I am so afraid.

I promised questions and here they are:

1. How long does it take to get biopsy results?
2. Do doctors do hysterectomies on patients who do not have cancer but do have a history of other problems?
3. If my biopsy is positive, what happens then?

~Ayah

Hi, Ayah. I used to live near St. Louis, too, and it's nice to hear from someone there.

Biopsies are really scary, and I'm always trying to prepare myself for the worst possible news, too. I had an abnormal pap last year, with some cells suspicious of HSIL. It took about a week for the biopsy results, and it turned out to be LSIL instead. At my 6-month follow-up pap, it was completely normal. Sometimes these things can regress on their own.

If it turns out that your biopsy is positive, remember that cervical cancer is one of the most treatable cancers for women (that's what my doctor told me, anyway). A good friend of mine was diagnosed with cervical cancer in situ two years ago and had a hysterectomy--and she's completely fine now. There's an email group on Yahoo called gyn-gals that is for women with gynecological cancers that you could look into. It's an amazing group of women, with lots of experience to share. It's an email list rather than a website like hystersisters. If you'd like more information, let me know.

It's hard to tell whether your doctor will recommend a hysterectomy without the presence of cancer. I would advise that you be completely honest with your doctor so his/her recommendation is truly what's best for you.

Meanwhile, cry as much as you want. My time waiting to have the biopsy and then waiting for results was much more frightening and emotional for me than my upcoming hysterectomy.

I hope everything goes well with your biopsy, and feel free to cry as much as you want.

I had a cervical leision a few years back and had a biopsy but it all turned out fine. However it is very scary the whole situation. Chris is right in that cervical cancer is very treatable.
Good luck with your biopsy and try to take it one step at a time at this stage. Please let us know how you go

Thanks for your kind words.

I have an update:

I went to the doctor on Wednesday. She did not do a biopsy. I was poked and prodded and she came to the conclusion that I should have a hysterectomy. First I am having a LEEP procedure on the 17th because if I have cancer the steps are different than if I don't. She laid out the steps we need to take to get to a hysterectomy. The first is to take birth control and see if the pain goes away, but I can't take birth control because of a family history of blood clots. Next will be a laparoscopy to check for endometriosis or a number of other things. Then, if the problem is something we can't handle easily I will have a hysterectomy. My doctor believes that in my situation a hysterectomy is a reasonable choice, but we have to do a few things to make it acceptable to the insurance company.

Has anyone here had a LEEP? Can you tell me about it.

~Ayah

I had a LEEP procedure done...but it was about 10 years ago. I had it done in the office, and if I recall, although I was a nervous wreck, it was more like a pap than anything else. I was given a local anesthetic. Afterwards there was minor cramping and some discharge for a week or so. Everything came back fine...keeping fingers crossed it does for you too!