To Rose / Re: Introduction

[Guest guest]

Dear Rose,

welcome to this wonderful group of women! Oh, your experiences with doctors

and uterine bleeding sounds so familiar. We get so used to living with bad

bleeding, our doctors tend to forget that we put up with a lot and don't

want to come in for every heavy period. So our blood levels can get very

low because we are so used to feeling crappy and not being able to do a

thing about it.

And it seems as if most of us here have been told that we need a

hysterectomy, especially those women who are over 35. And what we have

found to be true here, when we hear these words, is that we need another

doctor's opinion.

You said you are wanting another child, you are 38, and you are suffering

from anemia due to your fibroids; sounds like you need to make an apt with a

fertility specialist. Reproductive endocrinologists (RE) that work in

fertility centers can help you determine what your options are with your

fibroid treatment. They are highly skilled in the latest surgical

techniques of retaining fertility even if you are not wanting a baby but

want to keep your uterus intact. Hysterectomies are not their #1 answer

unless there are no other options to improve a woman's health and quality of

life.

I have been seeing a RE for six months. He has changed my life. I lived

with the terrible symptoms of fibroid bleeding for years thinking I would

probably not be able to have children and that a hyst was inevitable. But

once I went to see a RE at a fertility clinic because my regular gyn told me

I could not lose so much blood every period any longer, my hubby and I were

blessed with a wonderful doctor who removed my fibs via several

hysteroscopic resection surgeries and told us pregnancy was actually very

possible. I never thought I would hear such good news. So I am so grateful

I did not agree to a hyst all those years ago. And now that my problematic

fibs are gone, my periods are incredibly light, short, and almost like

spotting. It's hard for me to believe it's my own uterus that is

menstruating! Sometimes I feel like I have had an organ transplant! And

the best news is... my hubby and I are now trying to conceive (TTC)!!!

You said your Hemoglobin was down to 5.0... oh my goodness that's

dangerously low. Are your doctors having you take a high dose of

supplemental iron? Did you need a blood transfusion? That level can be

very serious if not treated right away; how are you feeling? As a woman who

was at your hemoglobin level last summer, I caution you to get iron in your

body if not red blood cells from a transfusion. I know it's your call to

have the transfusion, but usually when you get that low your doctor will

insist on it. If you go any lower, you may be at risk of a stroke. I got

down to 5.0 last August from my heavy periods (before my resection

surgeries) and I had to receive 4 units of blood. I was then put on 1300 mg

of supplemental ferrous sulfate for several months to boost my red blood

cell production. Be sure you are taking iron, your health depends on it.

The best thing you can do for yourself is to become as knowledgable about

your fibs as you can. It is wonderful that you found this group before you

make any major decisions about your treatments. You can get lots of

information here to help you better understand the path ahead in your

fibroid/ttc journey. You will become a better patient too when you are

better informed. Being persistent and assertive will help you get the

treatment and care you need.

Here are some questions you can ask your doctor and post here to help you

become more knowledgable about your own condition:

What type of fibroids do I have? Are they subserosal, intramural, or

submucosal?

Where specifically are they located: near the cervix, the fundus, the

follopian tubes, pressing on other organs, pendunculated, embedded, and are

they abnormally large?

What drug treatments as well as surgeries are available for these types of

fibroids?

What are my chances of getting pregnant? Am I still ovulating? Are there

drugs available to stimulate ovulation?

What should I be doing about my anemia? How often should I have blood tests

to check my hemoglobin and my hematocrit levels?

Can I rule out other uterine conditions?

What types of tests are available to be sure my fibroid diagnosis is

correct?

Is " the Pill " best for me for now?

What if my insurance does not cover seeing a RE at a fertility center?

Is my disorder common? Or am I an unusual fibroid case?

Be sure to get more than one opinion. And if you cannot find another doctor

locally that will give you answers other than hysterectomy, go to a town

where there are more doctors available.

Good luck on your journey!

Please keep us posted as to how you are feeling as well as any other

concerns you may have.

Blessings,

:)Sonja