LAVH I may have had unnecessary surgery

I had my hysterectomy Aug 19th and have healed and doing well on that end. The decision for me had been made because of severe anemia and iron deficiency. After iv iron infusions and 10 months of tests and no findings for the anemia other then heavy periods we went with the surgery option. It had to work, right? Nope, I started having the symptoms of anemia again and followed up with my hematologist the other day, My blood tests show levels are depleting again. Now I am heading back to weekly iv infusions again starting next week. How can this be happening when I am no longer bleeding? I am so depressed. I don't regret the hysterectomy but I may not have needed to go through this as it didn't fix my problem. My uterus was "healthy for my age" and I probably could have done with an ablation or IUD to lighten bleeding.

I'm so sorry to hear this. It sounds like you have gone thru lots of testing, and I assume this has been looked at, but have they checked your Vit B12 levels? (i saw this on TV-mystery diagnosis..and in the case they missed this...so just curious) Have they looked into other auto-immune causes of anemia (rather than a source of bleeding being the cause?) Have you had colon/endoscopy/pill camera tests to rule out anything in GI system from mouth to anus? (in otherwords, not just the top part and bottom part, but also the middle where they cannot reach except with pill camera) Since having your surgery, have they done any tests to rule out bleeding from possible complications of surgery? (CT scan of pelvis?)

Anyway, I am so sorry to hear this, and bet it must be sooo frustrating to have such severe anemia and not know the cause. I hope they keep looking to find the cause so you can get better.

I'm sorry you still have the anemia after all that, it must be so frustrating. Have you had a GI workup? That was the cause of my anemia and a common cause. (I'm sort of assuming they did that already but if not do follow up with a GI). I hope they can track down the true cause of the anemia so you can get some relief there. It's hard when we follow medical advice and then find maybe it was not appropriate. I know I've had that experience with other medical issues and it's hard to come to peace with them----at least for me. I hope you get some answers and relief soon.

Thanks for the input guys, nice to be able to talk/share. My family has been great but I worry they do tire of hearing complaining.

I have seen the GI, I had the colon/endoscopy though not the mini cam. Dr said we could try that but he didn't think at this point we needed to. My vit B12 is fine, and I have had more blood tests that I can count. I have seen a Rheum and I do have a genetic marker for an autoimmune disease (spondyloarthropothy) that is said to be inactive at this time. This all started in Oct 09 when I was flown by Lifestar from one hosp to another for emergency surgery for an aneurysm that it turned out I didn't have (oops) and I had hoped it was to end with my Aug 19th surgery.

Now I haven't looked into, nor has it been suggested to me, that there could be an issue with bleeding from the surgery. I'll call my Gyn today.

Anemia is a rather general term, like hepatitis. It simply means that your body does not have enough healthy red blood cells. There are many possible causes of anemia, including excessive or chronic blood loss, too much blood cell destruction (it's natural for cells to age and die, but when it happens too fast...), or an inability to produce new red blood cells at a normal rate -- and each of those, in turn, has many possible causes. I'm glad you're under the care of a hematologist, and hope you get the problem under control soon.

Sorry to hear you are still having problems. I hope that they figure this out so that you don't have to have transfusions. Hope you feel better soon.

Well the newest blood results came back today, they are low but holding. Oral iron over the past 5 weeks didn't increase my levels but at least I've held somewhat. My dr still feels its best for me to have 3 to 4 infusions this month to get me feeling better right away.

I am more worried about figuring out whats causing it then wearing a band aid and It feels as though they aren't looking any farther. They tell me its malabsorbtion and some women "just need maintenance"
I don't want to accept that answer. I don't plan on infusions every 6 months either!

Have you seen a hematologist doctor? They specialize in blood and may be able to come up with something.

I know you said the hematologist thought it was malabsorption but why isn't your body able to absorb the iron it needs? I can understand your frustration and feeling like they are putting a bandaid on the problem. I would just keep asking questions and ask why you are having a problem with absorption of foods and liquids. Are your doctors talking to each other? I know for me that has been one of the problems that they weren't always talking to each other. Sending lots of

By any chance have you had gastric bypass or lap-band surgery? A friend of mine had it and has constantly had anemia issues. She recently did the iron transfusion thing and it seemed to help a bit.

I suffered from anemia for years. I'm so sorry you're going through this.