I'm Confused, I Could Use Some Help

So, I'm new - but I wanted to jump right in, because I'm not sure what to do and I could use some advice. I apologize in advance for the length

I went to the Gyno a couple of weeks ago. I saw the PA, because I would have had to wait three months to see the Doc.

She was nice, but I just didn't feel comfortable with her, so when she ordered additional testing, I asked to have the follow up appointment with the Doc (supposedly easier to do than a first time patient visit)

They agreed and set that appointment for this past Tuesday.

I get there, it's the PA again - but I'm anxious to find out what's going on - so I go ahead.

They do a vag US and tell me I have intramural fibroids and will need 'another test' before they can tell me what my options are.

They called me later in the day to tell me the cost involved for a Hysteroscopy and to set up the appointment (I have pretty bad insurance).

Again, at this point - I'm still not sure what my 'options' are - only that I need this additional test, so I asked the caller if she could find out what the purpose of this test is and why I must have it (it's expensive...I'm still not 100% sure what their plan is)

She blurted out that I have to have it before I can have my hysterectomy - they are checking to see if I have cancer.

What!?

1. Hysterectomy? Don't I get to have some sort of discussion with someone before they just decide what to do?

2. Cancer? If they're doing a Hysterectomy - why does it matter? Besides - I've had normal pap's since I've been having paps...

I know I need a second opinion - I know I do, but for whatever reason, I feel like I need someone else to tell me that this is the right thing to do.

I'm frustrated that we're this far into the game and I've yet to even MEET the Dr. and they've already decided I need a hysterectomy.

Is a hysteroscopy normal before a hysterectomy? Is it a normal at this stage of the game, when I don't even know what my options are?

My appointment is next Wed - should I go for it or should I get my records and get a second opinion?

I should add - I'm not totally against a hysterectomy. I have a number of underlying health issues that would be 'helped' by not having my cycle each month. In the end, I'll need to have *something* done to address my excessive bleeding, painful cramps and need for blood transfusions...but I'm just not confident I've found my Dr.

Any advice you can give would be great. Thanks =)

First, I want to mention that I have had experiences where someone other than the doctor stated what the "plan" was, interpreted why testing was being done, etc. And they were wrong. My MIL is currently dealing with a situation where a nurse stated, "You are dismissed from treatments, they won't help you any more," and that was NOT in accordance with the doctor! No one but the doctor (or PA) has the authority or knowledge to state why a test is being done and what the end result could be. Definitely not a staff person without a medical degree.

Next, a hysteroscopy is NOT done solely for cancer concerns. The purpose of this test is to check the endometrium to find a cause for abnormal bleeding, look for polyps or fibroids, check the shape of the uterus, see if there is scar tissue, and more. During the test some treatments can be done such as using heated tools to try to stem abnormal bleeding and removing polyps.

Many of us have had a hysteroscopy prior to a hysterectomy to see what was going on inside the uterus that might explain the problem. Several of us have also had a laparoscopy done along with the hysteroscopy. While the hysteroscopy allows the doctor to check inside the uterus, the lap allows the doctor to check the outside of the uterus. Knowing what is causing the bleeding opens the door to discuss viable options so yes, a hysteroscopy can be a valuable diagnostic tool. Additionally, some insurance companies will not pay for a hysterectomy if some of the diagnostic testing, such as a hysteroscopy, has not been completed.

Before you undergo a surgical procedure, I think you should get some of your questions answered and meet with the surgeon. Because you are not comfortable with this doctor's office, you should also consider a second opinion before moving forward.

If cancer is suspected and noted on your chart anywhere, you may want to consult with a gynecological oncologist--but don't panic that cancer is a concern based on a comment by a staff member vs. a physician. The type of surgery and testing does matter if cancer is a concern because more than just the uterus may need removed. You also want an oncologist to make sure stray cells are not missed or displaced, creating future issues.

In your shoes, I believe I would make a list of all of my questions and concerns to take to my next appointment. I would not consent to any procedure until I had all the questions answered and I had met with and was comfortable with the surgeon.

Sorry you are going through this.

If I were you I would call the doctors office and schedule a sit-down with the Doc or the PA to talk things over. Tell them it is going too fast for you and you need to get a better idea of where this is going before you schedule any procedures.Ask about options. You are entitled to this. If you do not like this practice, try a different one.

BTW, I have intramural fibroids,too. I had an ultrasound, a uterine biopsy, and a MRI...no hysteroscopy. Not to say that it isn't a useful diagnostic tool...it just never came up .After the biopsy results came back, the doctor sat me down and explained my options to deal with the fibroids. There are several choices. She gave me some literature, told me to research and call her if I had any questions. And call her I did! Based on all that, I have made a decision that I feel is best for me.

Good luck to you!

Yikes, I think I would want to see another doc too! In your case, getting a second opinion is the right thing to do.

They may need to have a closer look at what the US showed before they themselves know what they can do about it. They may not want to "spend" the Dr's time until he has all the relevant tests done. A hysteroscopy is kinda invasive (they have to dilate your cervix to insert the hysteroscope under sedation or anethesia), so I am surprised you didn't get to discuss it with the GYN first.

The hysteroscopy is a useful diagnostic tool, both to see something or rule it out, and can be used to take a biopsy. A d&c can be done at the same time to study the endometrial tissue in the lab. My ob/gyn did mine with a d&c and also a lap at my suggestion, but I got to discuss everything with him before any of those things were done.

Almost every condition has alternatives to hysterectomy that should be at least discussed first, whether you choose to try them or not. If you don't have cancer, depending on your age & family history I'd expect they would offer some or all of the following: BCPs, Mirena IUD, and/or Cyklolapron first, then maybe d&c or ablation before any surgery.

You mentioned the US was "additional testing", were other tests were done prior? Are you severely anemic? Intolerant of hormones? Cyklokapron might not be a bad place to start, it is non-hormonal and is supposed to cut your monthly flow in half. I don't know if it can be used long-term, but it may buy you time to study your other options and get a second opinion. I am trying it out starting next cycle, but I don't have bleeding that bad. Another sister who did have fibroids told me in a PM that it did wonders for her, and allowed her to get her iron count up.

Remember, if it doesn't feel right to you, don't do it. Never underestimate the power of intuition!

Fibroids are considered benign tumors, not malignant at all. The staff person may have mentioned cancer due to the word "tumor."

I don't know your exact situation, but the hysteroscopy was worth the money to me. I know the fee for mine was $2,500 before the insurance and copay. They have not sent me a bill yet, I am afraid, lol. But, I was able to see what the dr saw, and he was able to explain what the evil monsters inside of me looked like. It gave us both a chance to see the severity of my problems, and for him to make a decision on recommending conservative treatment such as an ablation, or surgery to remove just the fibroids. Of course you know things are not looking good from the dr.s point of view when he first looks and starts making tsk tsk sounds. But he waited until I was in their recovery room with a nice heating pad and calming music and a pretty candle to come in and explain the true reality of what he had seen. So, if this test is something they feel you need to have done to see what procedure you can get, then I say it is worth it, just for your own peace of mind.
The procedure is uncomfortable, but I felt ok enough to go to work the next day, although not all women do, so if you can schedule it on a Friday so you can rest over the weekend, then that is a good idea.
Good luck with your plans, and remember, this person may potentially remove something from your body. Please make sure you are comfortable with the dr and the staff, and if not, before you commit to any more tests, wait and see the dr. and even then, there are many gyns out there.
Sorry for the long post. Boredom and insomnia have set in- I am 2 weeks out from my Davinci and ABSOLUTELY convinced this is better than any vacation to Hawaii. I spent my vacation money to have my surgery, lol. Despite having some pain, and a long healing road ahead of me due to early complications, I was 100% comfortable with my dr from the get go, and that has made a huge difference to me.