I have met an amazing woman named Teresa through Twitter who has the same conditions that I have. Please follow her at @teresa_booth or add her on Facebook at https://www.facebook.com/teresa.s.booth. She has given me a lot of advice and I truly admire her for being so strong through her difficult journey. She has decided to share her struggle with 3 pelvic disorders.
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My name is Teresa and I started having symptoms when I was 22. I am 41 now. I saw my
gynecologist and got diagnosed via laparoscopy rather quickly. I took
birth control pills which helped for a while, and then decided to come
off them. I wanted to get pregnant, but we didn't try very hard.
Meaning, we didn't do anything to stop it, but we didn't put forth any
extra efforts. We later separated, so there was never a baby.
In 1999,
my periods had gotten so excruciatingly painful that I went back to my
gynecologist and asked to be put back on BC. She recommended the
Depo-Provera 3-month injection. I was on that for 5 years, and it
worked wonders!! I had no periods and NO PAIN for 5 years! I gained a
little weight, but I was okay with that. I then found out through my
own research that it was recommended for more than 2 years due to a risk
of bone loss, something my doctor had not told me. I opted to come off
it because I had my bone density checked, and I had Osteopenia. That
is bone loss not severe enough to be considered Osteoporosis. My
gynecologist is the one who suspected I had IC, and she sent me to a
Urologist. I did, in fact, have it. After I stopped the Depo-Provera, I
tried various pills and various doctors.
In 2008, I had a second
laparoscopy. I was found to have more active endo and adhesions. It
was ablated (burned off), and I continued on pills. In 2009, nothing
seemed to be helping the pain. I requested a Hysterectomy from my
gynecologist. I also wanted my ovaries removed. She told me it was the
only cure, but she didn't think I should do it. I was only 38, and
surgically induced Menopause can be a nightmare. In someone my age,
there is an increased risk of heart disease as well as bone loss. I
agreed to take Estrogen pills, and she eventually agreed to do the
surgery. She told me there was some endo that she could not remove, due
to the locations, and that it would dry up with my ovaries gone. I
later found this to be untrue. I continued to be in pain.
I was
researching on the internet, and came across the website for the Center
for Endometriosis Care in Atlanta, GA. I never dreamed I could go
there, but I wanted to. I have no insurance, so it seemed impossible.
They specialize in removing (excising) the endo, not organs. I wished I
had found them sooner. Later, I joined a group on Facebook called The
Endometriosis Research Center Discussion Group (it no longer exists).
There, I met the Program Director for the CEC in Atlanta. She helped
me do what I needed to do, and in July of this year, I was able to go
there and have surgery with Dr. Sinervo. The BEST surgeon I have ever
been to, and the best surgery experience of my life. He excised all of
my endo.
I can't say that I am pain free now. I still have the IC and
PFD. I hope to resolve those issues in the future. Whew. I hope this
wasn't too long, but my story is 19 years old. I think you got
the short version. :)
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Thank you for sharing your story Teresa. I know that you have had a difficult struggle and know that there has been more pain then what has been written. I hope that you are able to control your IC and PFD symptoms soon. God Bless!
xo Heather
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