12 October 2010

More pieces of the puzzle with the receipt of my surgical records


Over the weekend, I received my medical records from my surgery back in 2005. This is the first time I've had them in my possession and been able to read them for myself. My emotions are trying to find an even keel right now. It's hard. I know my brain is just trying to process everything.

The striking part of the surgical report is at the top of the first page. It reads:
  1. Bilateral ovarian cysts.
  2. Left hydrosalpinx.*
  3. Pelvic pain.
* A hydrosalpinx is a distally blocked fallopian tube filled with serous or clear fluid that can become distended giving the tube a sausage-like shape (as in my case)

Then right below it is the striking contrast. It reads:
  1. Endometriosis
  2. Right endometrioma**
  3. left hydrosalpinx
  4. left endometrioma**
  5. Pelvic adhesions
**Endometrioma is a noncancerous cyst or tumor formed when a tiny patch of endometrial tissue (the mucous membrane that makes up the inner layer of the uterine wall) bleeds, sloughs off, becomes transplanted, and grows and enlarges inside the ovaries.

Clearly, my doctor had no clue that she would find what she did. It's as plain as day.

After our health care switch to Kaiser, I met with a new doctor and tried my best to get her up-to-speed with my surgical history. When I explained that my endometriosis was something the doctor had not suspected or anticipated, I had this new doctor patronizingly tell me that she was certain the doctor that performed my surgery must have had a suspicion of what would be found and that she was certain the surgeon wasn't caught off guard. I had begun to think she might be right--that my recollection of the events must have been filtered somewhat through my own surprise. But the surgical report proves otherwise--some vindication and validation for me.

It is also striking that the radiologist's write-up on my pre-op ultrasound findings don't give any hints either. More validation that no one suspected what was really going on inside me.

In addition to validation, I've had some new revelations come about while reading through my file.

The surgical report indicates that my endometrial adhesions were worse than I had been told. It states, "Packing of the bowel was difficult with adhesions of the sigmoid to the posterior aspect of the uterus, as well as ascending colon adhesed to the left hydrosalpinx and ovarian cyst."

The ascending colon (shown above as 1) is the first part of four sections of the large intestine. The sigmoid colon (pelvic colon) (shown above as 4) is the last part of the large intestine and is closest to the rectum.

Until now, I didn't know that both ends of my large intestine had been adversely affected. I had mistakenly thought it was only the last section of my colon that was affected. I can completely understand now why I was having such digestive problems prior to surgery. And I'm also understanding how endo implants left behind on both ends of my large intestine could be impacting my digestive health at present. It would explain a lot.

The surgical report goes on to state that the hysterectomy (pre-planned at my insistence) was started. After clamping and isolation took place the report then states:
"At this time, a decision was made to do a supracervical hysterectomy [leaving the cervix in] since our exposure in the pelvis was inadequate and the risk of injury to uterus was higher with the adhesion of the sigmoid to the lower aspect of the uterus. That was dissected down until we could perform a supracervical. At this time, the cautery was used to remove the uterus from the cervix and the specimen was removed from operative site. The right fallopian tube and ovary were then isolated with fine dissection."
When the doctor spoke to my husband and me immediately after surgery (once I was awake), she had indicated the reason for this decision was to avoid injury to my ureters that were heavily encased in adhesions (scar tissue). I'm thinking that she either left that out of the above statement or meant to type "ureters" instead of "uterus" in the first sentence. Regardless, it is clear that my surgeon was having to think on her feet and make decisions on the fly. Again evidence that she hadn't anticipated what she found.

When I moved on in my file to the post-op pathology report from the lab, I found other information that hadn't been passed on to me.

The post-pathology report states that there was a benign sessile endometrial polyp in my uterus "showing a striking degree of papillary and eosinophilic metaplasia".

Yeah... when I first read that I was thinking what you're thinking right now... WHAT?!?!

So I looked stuff up. Here's what I found:
Interestingly, according to one source I found, one possible cause of endometriosis is metaplasia. This source also states that papillary metaplasia is rare and usually found in post-menopausal women (usually benign as it was in my case).

Here's why the pathology report is significant...

Prior to 2003, I had read a book about the symptoms associated with estrogen dominance. I had many, so I decided to order a saliva test through the internet to test my hormone levels and see if my hunch was correct. It showed that my estrogen levels were normal but that my progesterone levels were those of a post-menopausal woman (I was 33 and far from menopausal). Because my progesterone levels were so low in comparison to my estrogen levels, I was estrogen dominant. This fact was confirmed by a formal blood test when I was pregnant in March 2003 and I was subsequently classified as a "high risk pregnancy" because of such low progesterone levels. I lost the pregnancy at 13 weeks not knowing that the reason was because of the endometriosis and not my hormone levels.

Now that I sit here with my surgical report in my hands, I can see how everything is interconnected--more mysteries solved and more vindication after being told by one former doctor there wasn't anything wrong with my uterus and that I was imagining things (I only saw her once).

But the increased enlightenment and vindication still doesn't help the nervousness I feel about the path forward. I still have to juggle getting medical advice from doctors that are covered by our health insurance and getting a second opinion from a doctor who isn't.

I try not to think about it too much. Otherwise, I find myself tearing up or clinching my teeth from the stress. And teeth clinching just gives me a sore jaw and a headache. That's the last thing I need on top of everything else.

It feels much better to crank up some of my favorite tunes and have a sugar-free Popsicle or two.


alisaterry said...

Thank you for sharing these revelations on your blog. I have often thought of looking at my csection records but I'm not brave enough yet. I love you very much and hope this process ends with some peace and satisfaction.

Joanie said...

Wow! That's what I say! I'm grateful that you got your medical records and can now move forward. I think there must be a lot of comfort in just KNOWING rather than guessing.
Love you lots,

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