New surgeon letdown

Today I went to the gynecological oncologist (GYN/ONC) that my regular GYN referred me to. The surgeon reviewed my history that I’d printed out for her and told me with confidence that endometriosis is curable if all the reproductive organs (ovaries, uterus, cervix) are taken out, the endometriosis is completely excised, and the patient is put on a bio-identical estrogen-only regimen until she’s in her 70’s.

I asked her about just excising the endometriosis that was left behind during my first surgery, as well as the new stuff that’s grown since. The surgeon said she is not interested in giving me repeat surgeries, and insisted she’d have to take everything.

I questioned the idea that endometriosis is curable but she was adamant, in the same way that another surgeon was adamant with me. While she didn’t go so far as to explain ‘clinical cure’, I’m sure that’s what she meant. A clinical cure is not the same as a cure in the mind of the average person. As I’ve said elsewhere in my blog, according to medterms.com, the word ‘cure’ means “To heal, to make well, to restore to good health. Cures are easy to claim and, all too often, difficult to confirm.” For many people, when we see or hear the word ‘cure’ in context with illness and disease, we immediately think that it means the illness has been wiped off the planet for good. Examples include Smallpox, Measles, Mumps, Rubella and Diptheria, among others. But the sad truth is that none of these illnesses are fully cured. They are not wiped off the planet. In developed countries, there has not been an incidence of these illnesses in a long time due to vaccinations. Therefore, experts say we have cured the population of those illnesses. The illness has not gone away, though; some of these illnesses still thrive in other parts of the world to this day.

There is no vaccination for endometriosis. If any amount of endometriosis is left in a woman at time of surgery, there WILL NOT BE A CURE. There will instead be continuing pain from the disease. Surgeons asserting that they can get all of the endometriosis out are providing false hope for women. Surgeons should say they are confident in their abilities as surgeons, but should ALWAYS, ALWAYS caution their patients that there is a chance that some endometriosis may be missed at time of surgery – it’s inevitable because of the nature of the surgery and the fact that endometriosis can not only be buried deep below tissues, it can also accidentally be relocated during the surgery, and/or folded into the surgical incision. Any surgeon who does not warn their patient of these potentials is a quack.

So I asked her, “what if somehow you missed a spot of endo, but took out my ovaries, my uterus and my cervix, and put me on estrogen-only Hormone Replacement Therapy (HRT)? Would the illness not begin to proliferate once again, because it is true that endometriosis feeds on estrogen, whether natural or synthetic?

The surgeon conceded, and said “well yes, there could be potential for continuing pain and further surgery, then.” She then launched into the numbers, telling me that she’s performed 1,330 surgeries, and of those, only 3.8% have had to come back for more surgeries and/or did not have their pain relieved (But that’s still about 29 women! Who are those 29 women whose lives are still affected by daily pain! I’d like to talk to them!) I replied to the surgeon that I’m always in the rare side effects category for treatments, prescriptions, over-the-counter meds, and apparently even surgery, since my first one didn’t do jack shit for me. So I asked her how she can be so confident that I won’t turn out to be in that nearly 4% of patients who don’t experience any relief?
She again exuded confidence that I would be totally cured, and urged me to call a list of women who suffered from bad PMS and pelvic pain, who’d had a hysterectomy and who live well as a result.

But those 29 women! Let’s say they go out on the Internet and tell their story about how hysterectomy did not help their pain issues. Let’s say further that each surgeon has roughly 29 women per 1,330 hysterectomies who slip through like this and do not experience pain relief. Let’s suppose that many endo surgeons out there all have these numbers; Dr. Redwine, Dr. Nezhat, Dr. Seckin, Dr. Cook, Dr. Albee, Dr. Sinervo, Dr. Lyons, Dr. Perloe, Dr. Reich, Dr. Kanayama. That’s 10 doctors, plus the one I just saw, plus the one who gave me surgery already, so that’s 12 total. Now times that by 29 hysterectomy patients each who fell through the cracks as the measly 3.8% collateral damage. That’s 348 women, all posting on the Internet about having a hysterectomy which did not cure them of endometriosis. According to a UCSF article, “Hysterectomy is the most common operation performed on U.S. women other than childbirth and affects more than 600,000 patients per year.” If we apply the 3.8% collateral damage rule to that number, we now see 22,800 women who have not had symptom relief.
Now let’s go around the world with that – how many hysterectomies have not helped women?

When I tried to question the surgeon, she replied with what she has written in a specially prepared statement that she prints out and gives to her patients:
“No matter what you have read or found on the internet, or heard from your friends — what follows are the facts for the vast, vast majority of women. All the women who had a hysterectomy and are so happy with tehir results do not make websites, wrie books or talk about their surgery, so the internet and books are not a reliable source for most outcomes. In medicine, we report patients’ opinions and their experiences by analyzing hundreds of questionnaires and publishing the results so that you know what the probable results of your surgery will be and are not misinformed or biased by the individual stories you have heard or read.”

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

She then told me she’d proceed with a pelvic exam, so I got undressed and put the medical gown on. I told the doctor that I require non-latex gloves and pointed to which shelf I saw them on. I told her she must use the smallest speculum she has, because my vag is tight and tipped. I told her she must enter slowly and allow me time to angle my pelvis downward to allow for non painful entry. She complied with all of this beautifully, and there was no pain.

And then suddenly, she began a rectal exam. I scooted back a bit and exclaimed for her to stop, that I was in pain, that I didn’t know there’d be a rectal. She said she’d use more lube and went in again, telling me it was a necessary exam. I gasped for air, I clutched my fists to my chest, I cried out, I told her to stop, that I was in pain.
She didn’t comply.
The nausea set in. I got very hot. I was officially traumatised at this point, and she said in a cold demeanor, “I’m sorry, but that was necessary.”
I asked her why – she told me that my surgical report and my own description of my endometriosis symptoms indicates abdominal sacral endometriosis, and she said she’d be able to palpate possible endo via a rectal exam.
My teeth were chattering and I was nauseated. I told her I was in a lot of pain and I asked for some Tucks or Preparation H to ease the pain. She said she doesn’t have any of that on hand in her office.
WTF!!!

She sat down with a bunch of printed copies of what I can only describe as her personalised sales pitch FOR hysterectomy. She went over the details of a woman’s cycle and the hormones involved and how it’s bad news for women like me, and how a total hysterectomy can help, etc etc.

At the end of my visit, I asked her if she knew the following doctors: Cook? – “No”.

Redwine? “No”.

Nezhat? “Oh yes, love him! He’s the best in the field! He had special tools invented for him just to make his surgeries easier! I worked at Stanford the same time he did. He finished up his schooling just a few years before me. ” blah blah blah worship fangirl blah…

Well. I now have to rethink whether or not I want surgery from this woman. I have a whole big giant rant on Nezhat and his minions, but I’ve not organised all my thoughts on it yet. You’ll really need to sit down and read up on Nezhat yourself to get an understanding of how dangerous he is – and therefore any of his followers are.

I’m seriously still traumatised by my visit to this woman doctor today.

One Response to “New surgeon letdown”

  1. I Will Not Suffer In Silence » Blog Archive » Today so far and a note about hysterectomy

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