Endometriosis and hysterectomy

Have you decided to have a hysterectomy in the hope that it will alleviate your endometriosis-related symptoms? Then do take a moment to consider all of your options and the irreversible consequences.

Hysterectomy (surgical removal of the uterus) does not guarantee relief from endometriosis-related symptoms and can neither be classified as a “treatment“, nor as a “cure” for endometriosis [1-3].

Furthermore, surgery is surgeon dependent, and if all the endometriosis is not removed as at the same time as the removal of your uterus and/or your ovaries — you may still have endometriosis (and associated symptoms) after this irreversible procedure [4,5].

Let’s consider what endometriosis is: a disease where tissue similar to the lining of the uterus (known as the endometrium) is found outside of the uterus. This often means that the uterus itself is a normal and healthy organ and, in fact, removing that normal and healthy organ may have little impact on your pain if other causes for your symptoms are not addressed at the same time.

There are situations where the uterus may also be affected by secondary causes for your pain; for example, by adenomyosis (where cells similar to the endometrium are embedded into the muscular layers of the uterus), and this condition is likely improved by hysterectomy.

For women with endometriosis, who have severe period pain or heavy menstrual bleeding, hysterectomy may offer improvement or resolution of these symptoms. This must be balanced with the invasiveness and permanence of the procedure and for some women with endometriosis, who have a hysterectomy, there is no change in their pain symptoms after the procedure.

Definition of hysterectomy

The surgical removal of uterus through the abdominal wall or vagina. There are two types of hysterectomies: total and sub-total:

Total hysterectomy
The uterus is removed, including the fundus (body of the uterus) and the cervix.
Sub-total hysterectomy
The uterus is removed but the cervix is left intact.

When other pelvic organs are removed at the time of hysterectomy these terms apply:

Oophorectomy (or ovariectomy)
Removal of an ovary. When both ovaries are removed, the surgical procedure is called “bilateral oophorectomy,” whereas the removal of only one ovary is called “unilateral oopherectomy.” When both ovaries are removed, a woman will experience instant and irreversible menopause.

Salpingo-oophorectomy
Removal of Fallopian tube and ovary. “Bilateral salpingo-oophorectomy” (BSO) is the removal of both tubes and both ovaries.

Methods of hysterectomy

Hysterectomies are performed three different ways in various combinations:

abdominally
vaginally
laparoscopically

If you are considering hysterectomy, discuss the best approach with your surgeon. As is true with any type of surgery, make sure the doctor you choose has considerable experience performing whatever method you choose and that s/he knows to remove all endometriosis at the same time.

TAH – total abdominal hysterectomy
A vertical or horizontal skin incision is made on the lower abdominal wall, and the uterus and cervix are removed through the incision (with or without the Fallopian tubes and ovaries). Recovery time is usually longer than with the other methods. Endometriosis should be removed at the time of a TAH.

VH – vaginal hysterectomy
The skin around the cervix at the top of the vagina is opened and the uterus and cervix (with or without the Fallopian tubes and ovaries) are removed through this opening. There are no abdominal incisions, therefore there is generally a shorter recovery time. It is important to note that a vaginal hysterectomy may not allow adequate vision to remove any or all endometriosis at the time of the hysterectomy.

Laparoscopic hysterectomy
When a telescope is placed into the abdomen to avoid a larger skin incision, this is called a laparoscopic hysterectomy and there are three variations. It is generally preferred to an abdominal hysterectomy where possible since the recovery time is shorter for the woman. It is important to note that endometriosis may be readily removed with all three variants:

TLH – total laparoscopic hysterectomy
The entire procedure is performed laparoscopically with removal of the uterus and cervix and closure of the vaginal tissues with the guidance of the laparoscope from the abdominal side.
LAVH – laparoscopically-assisted vaginal hysterectomy
The upper part of the hysterectomy is performed with guidance from the laparoscope and the surgery is finished vaginally with closure of the vaginal tissues from the vaginal side.
STLH – subtotal laparoscopic hysterectomy (supracervical)
This is a sub-total hysterectomy (cervix is retained) performed with the guidance of the laparoscope.

Long-term effects of hysterectomy

There can be disadvantages to having a hysterectomy in relation to longer term health outcomes and clearer information on this has started to emerge – especially for those who have a hysterectomy prior to natural menopause.

For example, a large cohort study has showed that women with endometriosis, who had a hysterectomy before the age of 40, had a higher risk of developing coronary heart disease [6].
Another recent study tracking women (with or without endometriosis) who had a hysterectomy (with preservation of the ovaries) before the age of 35 showed they had a more than four-fold increase in risk of congestive heart failure and a 2.5-fold greater risk of coronary heart disease. Furthermore, these women had a 13% increased risk of higher blood pressure, and an 18% higher risk for obesity [7].
Two studies have suggested a significantly increased risk of dementia after surgical removal of the ovaries before the onset of natural menopause – the risk increasing with the younger age at the time of removal of the ovaries [8].

We’ve a lot to learn on the role that our uterus and ovaries (and the hormones and enzymes within them) play in terms of interacting with other vital organs and their consequent contribution to our overall long-term health — but the message perhaps is: don’t make hasty decisions about (healthy) organ removals…

The hysterectomy decision

Deciding whether to have a hysterectomy is a very weighty, and personal decision. If you’ve been advised by your doctor to have a hysterectomy, a second opinion is always in order.

Deciding whether to have a hysterectomy is a very important and highly personal decision.

Discuss all the risks and possible side effects with your doctor

Read books, articles, and personal stories about hysterectomy – especially first-hand experiences of women with endometriosis.

As previously mentioned, it is important to understand that some women experience a persistence of endometriosis and/or its symptoms after hysterectomy, even if all the endometriosis was removed at the time of the procedure.

And finally, consider your decision very carefully because “the hysterectomy decision” is not reversible.

Then make up your own mind.

Acknowledgment

This article is based on the original article on hysterectomy for endometriosis, written by Ellen T Johnson in 2005 and has been updated by the following co-authors:

Jason Abbott PhD FRANZCOG FRCOG B Med (Hons), Professor at UNSW, Sydney, Australia, Medical Director of Endometriosis Australia, and President of the Australasian Gynaecological Endoscopy and Surgery Society (AGES)
Heather Guidone, Associate Editor of Endometriosis.org, and Trustee of the Endometriosis Research Centre, USA
Andrew Horne PhD FRCOG, Professor of Gynaecology and Reproductive Sciences at Edinburgh University, UK, and Medical Advisor to Endometriosis UK.
Lone Hummelshoj, Publisher/Editor-in-Chief of Endometriosis.org
Neil Johnson MD CREI FRANZCOG FRCOG MRCGP, Professor of Reproductive Health and Gynaecologist, Auckland, New Zealand, and President of the World Endometriosis Society (WES)