“We uh…don’t really have a clue what’s going on with your body. So I’m afraid we uh… have to take your uterus out and just hope for the best” – Said a ‘Doctor’ without a clue to a woman with Endometriosis somewhere.
Weeks prior to my second laparascopic surgery this year, I had a consult with the Endometriosis Specialist Surgeon who would be performing my surgery.During this appointment, I sought out some advice as to what options would be available to me to manage the pain long term if it persisted after surgery. Much to my despair, I was advised to strongly consider starting a family as soon as possible after the surgery. The reasons put to me were that, pregnancy has been knownto alleviate the pain that most women feel during their menstrual cycle as a result of endometriosis. I was also told that women affected by endometriosis also tend to have a 50% chance of experiencing infertility issues.
And so whilst my single, 24-year-old, frazzled brain tried to process the satirical thought of having to (if I can at all) carry babies to avoid being in pain. The consultant then also suggested a hysterectomy as a ‘if all fails’ method of pain management.
So being that I would love to be able to have children and start a family at some point in my life, I attempted to dismiss the hysterectomy notion as something I would hope to never have to consider as an option. It was an option I decided would just not work for me, ever! And instead, I chose to focus on maintaining a healthier lifestyle emotionally, physically and spiritually after my surgery.
But…No thanks to this phenomenon called the ‘Frequency Illusion’, all I seem to see or focus on is the topic of hysterectomies and the impending doom I would rather not face at all!
My serious case of the ‘ Frequency Illusion’ was unfortunately triggered at my place of work where I am an Associate Practitioner in a Histopathology Laboratory. Surgical Organs, tissues , blood, faeces, bones, saws, scalpels, chemicals and pretty cool machinery are all part of my day at the office. Using several specialised and skilled procedures, we process the patient samples received on to microscope slides for the clinicians to study, interpret and determine cause of disease or death.
Of the many, varied samples we receive in our department of the lab, I have recently become a whole lot more interested in the endometriosis related hysterectomy samples. This is because, the women who seem to be subscribing to this procedure as a result of the debilitating pain they live with, are really young! Thus far, the youngest patient from whom we have recently received a hysterectomy sample from was 28 years of age!
Since then, I have not, and I just cannot stop wondering why so many more young women are electively considering going through such a major life changing procedure.
What is a hysterectomy?
According to NHS Choices (2013), a hysterectomy is a surgical procedure performed to remove a woman’s uterus. As a result of this procedure, the woman will no longer be able to get pregnant.
There are of course various types of hysterectomies on the menu, and the main ones are:
- Total hysterectomy- removal of the womb & cervix.
- Subtotal hysterectomy- removal of the main body of the womb whilst leaving the cervix in place
- Total hysterectomy with bilateral salpingo-oophorectomy – removal of the womb, cervix, fallopian tubes & the ovaries.
- Radical hysterectomy– removal of the womb, surrounding tissues, fallopian tubes, part of the vagina, ovaries, lymph glands and fatty tissue.
Why would a woman with endometriosis want to consider having an elective hysterectomy?
First things first on my quest of answers, I came across an article published in 2013 by the Daily Mail titled, “ Thousands hope hysterectomies will end their monthly pain, but it often makes it worse” Read The Article Here.
This article, many other blogs and forums pretty much set the tone on the blanket opinion on hysterectomies and endometriosis. A recent literature review by Rizk et al, (2014) in which he aimed to study the recurrence of endometriosis after a hysterectomy, also reported a high 62% recurrence rate of endometriosis symptoms in women who had elected for a hysterectomy as a permanent solution to their symptoms caused by endometriosis. With the most predominant reason being the incomplete excision of endometriosis. Of which, an accurate diagnosis again calls for another surgical procedure to do so!
And so, I found myself back at square one. Why in the world do thousands of women elect for the hysterectomy procedure?
Late night leisured internet trawling led me to quite a number of literature reviews published on hysterectomies and endometriosis. I observed that a certain chappy referred to as A.J. Sampson in the 1920’s, was quoted several times in several pieces of literature reviews to have rarely observed, an occurrence of endometriosis in women who have gone through ‘the change’. It appears to be that, this is where the link between castration and induced menopause in treating endometriosis was established. To date, this still has not been conclusively demonstrated.
And yet…almost 80 years later, there are still women who are being ill-advised by individuals in positions of insurmountable trust to consider this procedure as an option to ‘cure’ their pain.
I became one of those women.
The Impending Doom
It finally dawned on me. 80 years later and the methods and pathways of diagnosis and treatment are still stuck in a time warp. Of the handful of doctors actually clued up about this condition, they unfortunately also don’t seem to have no option but to set up camp in that cosy time warp where everything endometriosis appears to exist.
This where the idiom, “desperate times call for desperate measures” reads true. Endometriosis sufferers are desperate, and so are the doctors who have taken on the responsibility to dutifully care for and treat their patients.
Desperation is the raw material of drastic change. Only those who can leave behind everything they have ever believed in can hope to escape – William. S. Boroughs
So being that my middle name is “Positive Patty”, I really believe that we CAN escape the primitive ways of looking at endometriosis holistically if we can leave behind the primitive ways of doing things. (That includes offering elective hysterectomies to women with endometriosis)
P.s. If you haven’t already done so, please sign the petition for a UK National Strategy for Endometriosis. Sign The Petition Here