Part II of new surgeon letdown

WARNING: THIS ENTRY MAY TRIGGER SOME PEOPLE, PLEASE PROCEED WITH CAUTION

I’ve had a combination of not enough time in the day to finish writing about my doctor experience last week, and ongoing emotional trauma over the whole visit. That’s why it has taken so long to continue all that I want to say. I still may not say all I want to say by the end of this post, but I will give it a try…

One of the things the gynecological oncologist told me about my pelvic exam is that I have what’s known as an everted cervix. She said this is nothing to worry about, she sees it all the time. But when I got home and looked it up, the Internet scared me because I kept reading that an everted cervix could be a precursor to cervical cancer. I read that maternal usage of DES could lead one to be born with an everted cervix, other reproductive abnormalities, and autoimmune disease. I read that an everted cervix is considered a lesion and that the best treatment for this is to cauterise the cervix!

WTF!!!

I am so sick of doctors torturing my private parts! I had a flashback to the gynecological surgeon back in 2001 who emphatically told me I did not have endometriosis, so she wouldn’t give me surgery, but she insisted on a cervical biopsy without any anesthetic or pain meds. I went home nauseated and shaking from the pain and trauma of that visit and have hated her ever since. I filed a formal complaint against her in 2007 after her colleague operated on me and found stage III endometriosis with my left ovary stuck to the back of my uterus and my right ovary stuck to my pelvic sidewall, and more endo found between the bladder and the pelvic sidewall.
An inquiry followed, with the panel finding the previous gyn not at fault – no wrongdoing – no censure, nothing.

GAH, I hate people.

ANYWAY, after the Internet made me panic about having an everted cervix, I called up my two most recent gynecologists and requested they tell me if they’d noticed whether I have an everted cervix. The one who mattered most called back. I say she mattered most because she saw my cervix before surgery in 2007. The eversion was present even before surgery. How far back does this go, I wonder?
Anyway, she left a message saying she has no idea what this new gyn is telling me, but I don’t have an everted cervix. I have what’s known as an ectropion cervix, and that too is nothing to be concerned about.

After listening to her message, I looked it up; ectropion cervix is the SAME THING as everted cervix.

These doctors, I tell ya I wanna strangle ’em.

I read up a bit more on ectropion/everted cervix and found that it’s considered to be a non-malignant disorder:

“Nonmalignant disorders of the cervix (the narrow opening at the mouth of the uterus) include cervicitis, cervical eversion, cervical polyps, and cervical dysplasia. Cervicitis is a broad term for an inflammation or infection of the cervix. Cervical eversion, also known as ectropion (often mistakenly termed cervical erosion), is the migration of cells from the lining of the endocervical canal (endocervix) to the outer portion of the cervix (ectocervix). The cells from the endocervical canal are more delicate than the cells of the ectocervix and thus more susceptible to infection. Actual erosion or abrasion of cervical tissue is quite rare but may occur following childbirth, certain medical procedures, sexual intercourse, or the use of an intrauterine birth control device (IUD).”

Further, the website states that “Cervicitis may be caused by vaginal infections, sexually transmitted diseases, and pelvic inflammatory disease. Tears or lacerations in the cervix occurring during childbirth or abortion may lead to cervicitis. The cause of cervical eversion is not known. The condition is normal in early puberty, and some women are born with it. Pregnancy and long-term use of oral contraceptives may increase risk.”
Well, I’ve had two abortions in my lifetime, one which had complications. I’d taken RU486 and nearly passed out from the pain. I thought I would die. I went through it without pain meds because I’d barfed up the vicodin I was given. Four days later, I nearly passed out again because the placenta decided to finally pass. Perhaps this abortion is what created the cervical eversion. I really wish I knew if I was born with it, but none of my previous gyns still have my records on hand.

The other thing that scared me during my visit to the gynecological oncologist last week was that she’d asked if I’d gotten the CA125 test, yet. I looked at her funny and said, “No, no one will give me the test because of my age and the fact that I have endometriosis creates a false positive for that test.”

The gyn/onc nodded and said that yes, the test does give false positives for women with inflammation and disease such as endometriosis, but she would like to run the test, anyway. She wrote me up a prescription to go to a lab and get my blood drawn. That was just one more thing to stress me out that day. My head swirled with, “why is she insisting I get the CA125? Did she see something during the exam? Will she use the results of the test to try to convince me further that I must get a hysterectomy?” I mean, seriously, because CA 125 can be elevated in so many non-cancerous conditions, only about 3% of women with elevated CA 125 levels have ovarian cancer.”

I’m actually terrified to have a hysterectomy. I’ll be 38 next month and had no relief from my pain from my first endo surgery in 2007. Everyone has underlying issues other than the big issue placing them into the hands of the hysterectomy surgeon, and that’s why so much can get complicated for a hysto. I just don’t trust that this doctor can effectively remove all of the endo from my body before putting me on estrogen-only HRT for the next 30 or so years.

And there’s that too – HRT until I’m in my 70’s.

I’ve started to research estrogen-only therapy for women under age 45. I want to know – did any of those women get cancer quicker?

Sites such as this do NOT help me to want to have a hysterectomy.

Big sites like HERS Foundation and HysterSisters look fishy to me – they look like they’re supported by radicals and/or big pharmaceuticals with their own agendas, while saying they’re there to help women. I’m far too pessimistic to trust that they’re really there for altruistic purposes. I can’t find stats and medical journals to back up info on the HERS Foundation for example. I need non-manipulated data, please! And HysterSisters keeps plugging hormone treatments like Vivelle-Dot and surgical stuff like da Vinci surgical system for hysterectomies. I don’t want corporate sponsorship and advertising!

And then I found this article:

Researchers continue to weigh in on estrogen monotherapy arm of WHI study
December 14th, 2004

Yet another group of researchers, this time from Germany, has commented on the termination of the estrogen-only arm of the Women’s Health Initiative.

“The study arm of the Women’s Health Initiative (WHI) with estrogen monotherapy for hysterectomized women was terminated early after an average of 6.8 years – only 1 year before the planned ending – due to increased risk of adverse effects (HR 1.39, per 10,000 women 12 additional cases). However, according to the regulations of Good Clinical Practice, the early termination was not necessary, as the fixed termination criteria such as exceeding a defined ‘absolute excessive risk’ were not met,” stated A.O. Mueck…

From there, I found an article from OB/GYN Clinical Alert, which reads:

The updated breast cancer results in the canceled estrogen-only arm of the Women’s Health Initiative (WHI) are based on 237 cases of invasive breast cancer and 55 cases of cancer in situ, diagnosed by the February 29, 2004, date of study cancellation.
…The breast cancer results in the WHI do not allow us to answer the above questions with any confidence. Exposure to estrogen-progestin either has a greater risk of breast cancer, or pre-existing tumors respond differently to various hormone regimens, accounting for differences in epidemiologic reports.

…Many of the WHI conclusions are the result of statistical manipulations.

And you can see the progression in the study’s fumblings here.

Now, what is important about the Women’s Health Initiative articles is that all the conflicting data arises out of the 2004 study, but all the quotes the gynecological oncologist uses to make her case FOR hysterectomy without negative side effects are from the 2001 WHI report. She uses the following language in her patient handouts: “We know finally, from the WHI Study, that for women age 50-59 without a uterus, needing estrogen therapy for their symptoms, there is virtually no risk [bold hers] to taking estrogen alone for many years: no increase in breast cancer, heart attack, stroke or blood clot. For women over age 60 still needing estrogen for their symptoms, some unfavorable risks appear: the rate of stroke increases from 0.33% to 0.44%, an increase of .12%. Also, the risk of blood clots in the legs increased from 0.15% to 0.21%, an increase of .06%. The risk of heart attack decreases from 0.24% to 0.14%, and breast cancer risk decreases from 0.29% to 0.21%. All of these changes are teeny-weeny and frankly ignorable for the woman with significant symptoms who needs to feel like her normal self.”

Now…looking at the 2001 WHI report, they had to stop THAT trial, too, because of HRT danger to women! And I quote:

“A review of preliminary data found a 26 percent increase in breast cancer in women receiving the hormones compared with women receiving a placebo. In addition, instead of a heart benefit there was a 29 percent increase in heart attacks and a 22 percent increase in total cardiovascular disease among women receiving the hormones.
…”Dr. Jacques Rossouw, director of the NIH, noted, “the increased risk of breast cancer for each woman in the study who was taking the estrogen plus progestin therapy was actually very small.” It was less than one-tenth of 1 percent, he said, adding, “if you apply that increased risk to an entire population and over several years, the number of women affected increases dramatically and becomes an important public health concern.”

Talk about statistical manipulations!!!! The gynecologist I saw last week is clearly a lying, manipulative sack of shit.

And that’s where I’ll end Part II of my ranting over that one visit to a new doctor.

2 Responses to “Part II of new surgeon letdown”

  1. shell

    someone posted a link to the HERS site on my blog, i thought it seemed a little far out there but never got around to looking up the facts.

    the other one you linked to… wow yeah even the opening vid. doesnt make me want a hysto.

    i to have endo on my bladder, and yet family doesnt seem to get their head around in that a hysto might NOT work. also, any time i have had my hormones messed will overly i end up suicidal not the happyest idea.

    The one good thing is no docs are pushing for me to have a hysto, but on the flip side they have nothing to suggest. to quote my surgen “well what do you want me to tell you? you’ve already tried all the treatments but danazole and we both agree that theres no bright side to that drug likely for you”

    super.

  2. steph

    Regarding your doctors telling you that you’ve tried everything and that there’s no bright side to Danazole – I understand all too well. There’s been no bright side to anything I’ve tried, and so I’m certainly not gonna go down the Danazole road if I nearly offed myself on Yasmin! Blah. At least we can commiserate. :/