I had a partial hysterectomy shortly after my 29th birthday. I was at the end of the line treatment-wise for debilitating pelvic pain and enormous blood clots, something which started when I was 12 years old. The procedure ended up doubling as an excision surgery, as my surgeon discovered Endometriosis lesions around my uterus and ovaries. Despite having multiple co-comorbidities such as Ehlers-Danlos Syndrome and Mast Cell Activation Disorder, everything went quite smoothly, and while my recovery period was long, I have been very happy with my results so far.
I was fortunate in that I had already made the decision that having children was not for me, and was actively seeking out “definitive” options to gain relief from my symptoms, which seemed to be affecting me more and more as I got older. This lead to a lot of judgement from both professionals and other people in my life. Something I noticed during my interactions with these people, was that they repeatedly wheeled-out the same, outdated fallacies, seemingly in an attempt to deter me from seeking surgery.
The decision to have a hysterectomy is challenging and it is definitely not without risks, but we do not need to be making the situation even harder on AFAB people by feeding them outdated or incorrect information…so today we’ll be busting some of those common myths wide open!
(As always, my references and links to further reading will be located at the bottom of this page.)
Myth 1 – A Hysterectomy means removing the ovaries
Many people automatically associate a hysterectomy with the removal of the ovaries, but this inaccurate. A hysterectomy simply refers to a surgery that involves the removal of the uterus.
Within the category of hysterectomy, there are different types of surgeries – a partial hysterectomy (the removal of the uterus only), a total hysterectomy (the removal of the uterus and cervix) and a radical hysterectomy (the removal of the uterus, cervix AND surrounding tissues, which may or may not include the ovaries).
The name for a surgery to remove the ovaries is an oophorectomy.
Why does this distinction matter? AFAB people need to be able to give informed consent for the specific surgery that they are having, and understand the risks and bodily changes that they may face afterwards.
Some AFAB people are also deterred from having a hysterectomy because of their or their loved ones’ concerns about what is actually an oophorectomy, when this may not even be necessary in their case.
Myth 2 – You’ll never bleed again
I know I know, your heart just broke a little.
While you should not experience heavy bleeding, and a standard menstrual period is impossible after a hysterectomy, light bleeding is still quite common.
Initially, you may experience some bleeding as the stitches dissolve, or if there has been any damage to surrounding nerves or blood vessels during the surgery.
If you still have your ovaries, you will still experience a hormonal cycle and may continue to have very light monthly bleeding due to the presence of endometrial cells in surrounding areas of the pelvis, such as the cervix. This is most common in the first few months after surgery.
Light bleeding is also possible months or years after a hysterectomy, due to granulation scar tissue. While this is usually not serious, it’s always better to check with a doctor and confirm the cause of bleeding.
A hysterectomy is also unable to prevent new growths such as polyps, which may also cause bleeding.
It is very important to see a doctor if you experience persistent or heavy bleeding after a hysterectomy, or if the bleeding is accompanied by other symptoms such as nausea or a fever.
Post-menopausal bleeding should ALWAYS be investigated further.
Myth 3 – No doctor will perform a hysterectomy before you reach age 30
Many doctors and lay-people alike may be quick to tell you that it’s impossible get a hysterectomy before the age of 30, or before having at least two children. However, depending on where you live, this may not be the hard and fast rule that everyone seems to think it is.
While most countries do have some laws surrounding procedures that result in permanent sterilisation, people are often surprised to learn how lax these actually are, and that it is in fact individual doctors, hospitals or insurance providers who choose to gate-keep these procedures.
Many countries actually only require a person to be over the age of 18 or 21 and to have passed a psychological evaluation in order to opt for permanent sterilisation. In the specific case of a hysterctomy, there usually needs to be a medically relevant reason for this procedure in addition to these base criteria.
Unfortunately, none of this stops individual professionals from denying patients these surgeries, but it’s important not to let someone convince you that this is a universally accepted reality and that ‘no-one’ will be willing to treat you. Many people are originally denied hysterectomies due to their age or child-free status, only to later find doctors who are willing to help them regardless of these factors.
(I eventually plan to make a dedicated post on how to best advocate for yourself in this situation!)
Myth 4 – Hysterectomy is a definitive cure for pelvic pain …OR It won’t help with pain at all
This one seems to be an absolutely bizarre oxymoron in the public consciousness.
The reality is a happy medium – that a hysterectomy can provide significant relief for people who live with a number of gynaecological conditions, but is unfortunately not a definitive cure in most cases.
A hysterectomy removes the uterus, and therefore prevents the formation of the blood or blood clots who’s expulsion leads to menstrual cramps. Depending on the type of surgery performed, the surrounding tissues may also no longer exist to contract in response to the brain’s signals to expel the uterine lining.
This is helpful for patients who suffer with heavy or painful periods due to health problems like blood clotting disorders, connective tissue disorders or certain cases of Endometriosis. Similarly, if a patient has Adenomyosis, (in which the endometrial tissue grows into the uterine wall) the removal of the uterus will eliminate that problem.
Having said that, there is a misconception that a Hysterectomy can cure conditions like Endometriosis. While it may result in a great reduction in pain and eliminate symptoms such as heavy bleeding and blood clotting, it does not stop endometrial tissue from forming in other areas of the pelvis or body, and patients may require repeated excision surgeries or other ongoing treatments to help manage this.
Many people with gynaecological conditions also experience problems with the tissues surrounding the uterus and may require other treatments such as pelvic floor therapy to help manage pain and/or poor mobility of these muscles and ligaments, especially if their concerns are the result of a greater underlying condition, such as a connective tissue disorder.
Furthermore, if the ovaries are not removed along with the uterus, patients may continue to experience pain from problems like cysts and PCOS, and will continue to experience the physical and emotional symptoms of pre-menstrual mood disorders such as PMDD.
The equally strange flipside of this is that some people don’t believe that a hysterectomy is ever an appropriate solution for pelvic pain, something which is clearly misguided. My personal experience is that this attitude is more common among professionals who practice allied health-care, such as psychology and physiotherapy. I often wonder if this group has a skewed perception of the success rate of hysterectomy for pain relief, as they may be consulted by more people who have not been happy with their results and are seeking new and different types of support.
Myth 5 – A Hysterectomy will ruin your sex life!
While I definitely do not wish to downplay the experiences of people who do experience a negative impact on their sex lives after a hysterectomy, I have been very disappointed to see the way that this is used as a scare tactic to deter people from having a Hysterectomy or other definitive gynecological surgery.
You know what ruined my sex life? Endless pelvic pain, chronic digestive problems, an endless stream of ineffective hormones that made me break out in hives and want to commit crimes…oh! and the crippling fear of an unexpected pregnancy that my body may not be able to support!
Being able to stop bombarding my brain with different hormones, having a significant reduction in my pelvic pain, and no longer having to worry about sex triggering painful cramps that lasted for days afterwards has been a huge blessing.
Sometimes people encounter challenges such as changes to their libido, or level of vaginal lubrication (this is more common when the cervix and/or ovaries are also removed), while some experience a welcome boost to their libido and confidence because they are no longer in pain!
Personally, I have not had any difficulty re-adjusting to sex after my operation, but everyone is different, and many people do go through an adjustment period. Fortunately, there are physical and emotional therapies available to help, and online support networks full of people who are happy to offer guidance after having gone through the same thing.
If you are considering a hysterectomy, I hope today’s myth busting mission has added to the knowledge you needed to make an informed decision. Similarly, if you have a loved-one who is considering or already going through the process of obtaining a hysterectomy, I will this post provided you with information that can help you support them without accidentally perpetuating outdated information.
Which other pelvic health taboos do we need to kill off!?
Let me know in the comments below!
References
The American Society of Anesthesiologists – distinguishes between the different types of hysterectomy and provides information on the different ways that these surgeries can be performed
Medical News Today – A summary of possible causes for bleeding after a hysterectomy and when it’s best to see a doctor
Wikipedias‘s – Legal status of human sterilisation by country
Egender Health – Summary of the evolution of global laws to human sterilisation and progress that still needs to be made
National Women’s Health Network – Unfortunately, it has been very difficult to find non-biased articles about the requirements for a Hysterectomy in younger people (a large part of why I wrote this post!). This article correctly asserts that in the US a person need only be of legal age and have a medically justified reason for the procedure, but unfortunately it strongly seeks to discourage the practice of giving these surgeries to younger people. I recommend looking up information that is specific to your country of residence or consulting the r/truechildfree list of doctors on Reddit for more information about the actual legal status of hysterectomy in your country.
NHS – Brief summary of some of the most common conditions that can be helped by a hysterectomy.
My Endometriosis Team – The benefits and limitations of a hysterectomy for Endometriosis
Flo Health – A balanced article about the different experiences that people may have of sexual intimacy following a hysterectomy.
Medical News Today – A brief overview of possible changes to sex after a hysterectomy and some simple suggestions to help.
HysterSisters – A huge network dedicated to providing support, information and community to those who are about to or are going through a hysterectomy