Attention Anyone Having Or Had Hysterectomy Because of Long-Term Bleeding Problems!!!

I wanted to share this story with everyone - it shocked the heck out of me. First of all, I had a hysterectomy/BSO in 2001 which was done to control unstoppable bleeding (60+ days).

My friend, I'll call her Annie for her privacy, has been bleeding nonstop for 4 MONTHS following a uterine biopsy. They threw every hormone in the book at her trying to get her stopped... nothing. When it turned to severe hemorrhaging last week they used IV Premarin on her twice in the ER. THAT didn't even work.

Now, Annie is suspected of having a blood disorder called Von Willebrand.

She was scheduled for total hysterectomy next Tuesday as a last resort. She asked her ob-gyn for help with her labor pain-like cramping. The obgyn offered nothing because she didn't want to give her NSAID's.

Annie saw her hematologist about the upcoming surgery. She happened to mention the bad cramps, and the hematologist gave her some Vioxx samples. Vioxx is a Cox-2 inhibitor.

Annie called me last night with great news - after taking Vioxx for two days, her bleeding has totally STOPPED for the first time in 4 months!!

I find this simply amazing. I am wondering if I had tried Vioxx if it might have worked for me!

We think the reason it stopped the bleeding is because Vioxx controls the "bad" prostaglandins that go to the site of injury and cause inflammation, swelling, etc.

I would love to hear any input on this.

When I had such horrible pain with my kidney problem (see the post "Endo, giant cysts, fibroids, hydronephrosis = Hyst?" for details), doc gave me some Celebrex for the pain, also a Cox-2 inhibitor. It worked quite well (I had 5 day's worth of samples, but my insurance wouldn't cover it, so that was that)!

BUT when I started my period the next week, I didn't bleed as much (I don't have the non-stop bleeding, BUT have always had LOTS of blood and clots and excruciating cramps). I attributed it to someone else's suggestion that I start taking iron to help with the bleeding and clots. Maybe it was the celebrex.

BTW, this woman's doc says that anemia causes heavy bleeding, which causes more anemia, which causes . . .well, you get the picture.

I have von Willebrand disease. I'm not familiar with vioxx, but I believe it's for cramping pain, not as a cure for symptons of von Willebrand disease. If Annie is suspected of having vWd she needs to be thoroughly tested before surgery. People w/ vWd are missing some or all of the clotting factor in the blood, which is why once bleeding starts, it's difficult to stop. If someone with vWd is having any kind of surgery they will probably need to have a medicine called Humate P administered right before surgery and for a few weeks after to make sure the bleeding stops. There's lots of information on vWd if you search the web and a good hemotologist will make sure she's prepared for surgery.

My (then) 12 year old daughter bled non stop for over 3 months. I had taken her to her pediatrician--she put her on BCP's, but even on 4 PILLS A DAY the bleeding didn't stop! One morning she woke up in a pool of blood, and I took her to the ER. They couldn't figure it out either. She was referred to a GYN. She was great. She put her on one week of progesterone only. This was to clean everything out--which would mean the period would get WORSE for 10 days. THEN she put her on BCP's (just 1/day) and she was fine. She was on the pill for just 3 months, and now has been off for over a year with completely normal periods!

Her GYN mentioned the "possibility" of VW disease...Your post grabbed my attention!

The only good thing about my daughters ordeal was that it was through that that I found my GYN!

Like your friend, I had 4 1/2 months of heavy bleeding and
huge clots with nothing able to stop it. BCP's, hormone shots,
Depo Provera shots, you name it and I tried it. After many tests
and three doctors (one was a complete nut!) my wonderful Dr.
found a fibroid that had taken over most of the uterine wall.
There were only 3 cm's visible, but the MRI showed it was larger
than that. He scheduled my LSH for 4/28/04. Following the
surgery, he said it was larger than he thought. His words were
"It was a honker!"

Back in March, I found a mention on the internet that
sometimes NSAIDS can work to slow bleeding. I took 2
ibuprofen every four hours for several weeks and it helped but
did not stop the bleeding. I believe it works by blocking
prostaglandins. I was ok'd to take it up until the day of
surgery. But as always, she should check with her Dr.

I have never been diagnosed with Von Willebrands disease but think I have it simply because even scratching a mosquito bite can result in me bleeding for days - I had my hyster 18 months ago because of uncontrollable bleeding - the only thing that stopped me was a high dose of provera combined with microgynon 50 (bc pills) which left me feeling suicidal and rageful. I'd have loved to have had an alternative drug that would have allowed me to live a bleeding free day but I'm thankful that I'm now healthy enough to go for a walk every day rather than the shell of a life I had before my hyst.

How was your friend diagnosed with VW? I am under the impression that it is very difficult to diagnose but am leaning towards having it done due to my continuing problems with excessive bruising whenever I accidently bump my leg which always results in an enormous bruise that takes days to reach it's true size and months to disperse.... Methinks I should got for a few tests but am reluctant due to the litany of pin pricks in my elbow from previous blood tests...