LSH with very large tumor -- and way outside 2 week window for healing!

Hi,

My story is really about this: keep on looking for doctors until you get the help you need. Don't allow your concerns to be dismissed before or after surgery.

If you've been given a 2 week window and you're still uncomfortable and not ready for work or anything else, don't give in to pressure to conform to a "rule of thumb".

I had suffered with the symptoms of a fibroid tumor for decades. In the late 80s the gynecologist told me the pain during intercourse was in my head.

When I developed a painful level PMS in the 90s, I thought it was peri-menopause. Extreme bloating and gas wasn't considered a symptom worth pursuing after I tested negative for allergies. My doctor at the time noted I had a fibroid but 'no big deal'. She didn't make the fibroid - gas connection.

About 2009 I was diagnosed by a new gynecologist as having a significant fibroid. I had trouble urinating to the point sometimes I couldn't and would have to get off the toilet walk around. She told me we should wait for menopause which would shrink the fibroid. Given my mother's history that was probably 10+ years away, menopause doesn't always shrink fibroids and more importantly I could have developed bladder and kidney issues with my urine flow being hampered.

Finally this year I went in and my gyn was astonished at the sudden growth of my tumor, time to get it out! Imaging showed it to be about 5" diameter.

The surgeon I found explained to me the tumor was sitting on my rectum, this was the cause of the bloating, constipation and gas, as well as the urine flow issues. She said she wished she could show me to medical school students to teach them to listen to patients, she was unhappy that multiple doctors had allowed the tumor to grow to such a size with all those symptoms.

The tumor ended up being 2x the size imaging showed. The very skilled surgeon removed all of it from a tiny incision in my navel. She had a great fun, compassionate attitude before and after the surgery. Until I fell outside the her desired norm for healing.

She scheduled only one two week post-op visit, and released me to all activity after a pelvic exam. Thanks to reading the site, I knew that even for laparoscopic surgery I could over-do it and set myself back so I followed the instructions here because I was still in a lot of pain, more than my surgeon thought I should have. Many HysterSisters do fine with two weeks, not me.

She gave me a third week off work, an 'extra' in her book. When I called for release for the fourth week she had me come in, did another pelvic and said, "Well it was a large tumor." The fifth week she refused my work release. The nurse read the four week exam notes and my pain was characterized as "occasional" and that I was fully recovered. She focused her exam and notes on my vagina and cervix, which I had no issue with. Did we even have the same conversation?

I felt really alone and scared. It was humiliating too -- was I really acting like a weak whiner that needed to shut up and get back to work? Before I left for surgery my boss said, "No one works harder than you." But it still shook me up.

I called my company's nurse and she said she had never heard of a doctor refusing a patient medical leave, and encouraged me to get a second opinion -- 6 - 8 weeks was the norm, even laparoscopic, let alone with a large tumor. I called the surgeon's office and let them know what the nurse said. The surgeon's office called back and offered another week of release if I was willing to get a CAT scan.

I went to my GP who also happens to be an internist. He couldn't believe the surgeon's post-operative care, that she released me for all activity at two weeks ("just listen to your body!" she said) without specific instruction and warning, and was dismissing my level of pain. He said the same thing the nurse did: 6-8 weeks is the norm for laparoscopic too. He said I could be uncomfortable for three months given the tumor size. For the first time post-surgery a doctor palpated my abdomen where the pain was. My recovery is a bit slow but within the realm of normal. He told me he'd see me again in two weeks and to stop doing so much (I was speed walking, he said 'normal walking only') and rest. He said he'd order a CAT scan only if my symptoms were worsening, which they aren't, just slowly getting better.

I'm at week six this week. Still on medical leave. Progressing well, but slow.

Please listen to your body and keep on going until you can find a doctor who takes your symptoms seriously and can help! They're human too with blind spots like the rest of us.

P.S. I can eliminate with the best of them now, my torso looks gorgeously smooth and flat compared to pre-surgery and that terrible full feeling is gone. Glad I had the surgery!