hysterectomy for endometriosis

Conquering the Uterus – Trends in Hysterectomy

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Every 10 minutes, 12 American women lose their reproductive organs, every day of every year. Hysterectomy is second only to cesarean in common surgeries. Approximately 660 women die each year in the United States from complications related to hysterectomy. Thousands more suffer long term side effects associated with oophorectomy – removal of the ovaries. The most common reasons for hysterectomy include:  uterine fibroids or rather the menorrhagia, heavy bleeding associated with the fibroids and endometriosis, an incredibly painful condition where uterine tissue grows outside the uterus. Both conditions are hormonally modulated, plague millions of women and take years to develop.

One would think that with such extended period of disease progression, 5-10 years, researchers and clinicians would have ample opportunity to develop innovative treatment protocols, long before the surgical removal of the uterus was necessitated. One would be wrong. Despite the cost of long term care leading to, and as a result of the hysterectomy; despite the outcry from the hundreds of patient associations, some with high profile members; despite the billions of dollars spent annually on performing what should be last resort surgeries, there has been no innovation in diagnostic tools for these conditions and no new therapeutics for women’s reproductive health developed in over 50 years, unless you call the re-purposing of old meds innovation.

Instead, innovation in women’s healthcare, much like American healthcare in general only magnified exponentially, comes at the end of the disease progression – when no other choice but surgery exists. Let’s build a cool robotic tool to remove even more uteri. Sure it will cost significantly more and have a higher complication rate, but the technology is so impressive that does not matter. Forget about developing early diagnostics and less invasive, more effective therapeutics, just take it all out and look cool doing so. Who would not want to perform surgery remotely with a million dollar piece of medical technology? Women don’t need their uteri anyway – a win win for all involved.

Robotic Assisted Hysterectomy

The robotic, joystick controlled, remote surgical tool is an impressive piece of engineering. With a price tag of over a million dollars per, it provides the cutting edge stature that all top-notch hospitals strive for. An added bonus, it makes gynecology, the long derided medical profession, the cool kid on the block. But does it work?

Well, not really. Sure it removes a woman’s uterus more quickly and with less scarring; a single ½ inch belly button scare versus two or three ½ inch abdominal scars, but it costs more and doesn’t reduce complications – may even increase them a bit. Compared to the minimally invasive laparoscopic hysterectomy, the robotic assisted hysterectomy costs $2000 more per procedure. As of 2010, about a quarter of all hysterectomies were performed robotically. That’s about $300 million dollars per year more to perform a robotic hysterectomy with no added gain health.  When combined with the costs multiple hospital stays, ineffective therapeutics and possible other surgeries that often led up to the hysterectomy, it is clear why women’s healthcare is so expensive.

Perhaps we could use our health dollars a little more wisely. Maybe we should spend some of those many billions of dollars or even a fraction of the $300 million spent annually on robot surgery, on prevention, early diagnostics or more effective therapeutics.

Update

Since this article was originally published in 2013, additional reports of complication rates for robotic surgery have been published. In a study of 298 patients undergoing robotic hysterectomy published in 2015, the complication rate was 18%. In 2017, a study of complication rates of a single surgeon using the robot, was 5.5% suggesting that some surgeons are better with this tool than others. In comparison, a study looking at 4505 hysterectomies performed by the same team between 1990 and 2006 (3190 were performed by laparoscopy, 906 by the vaginal route and 409 by laparotomy) saw the complication rates below 1%, significantly lower than that of the robotic surgeries, but again demonstrating that the skill of the surgical team is paramount.

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This article was published originally on March 18, 2013.

Should I Have a Hysterectomy for Endometriosis?

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Every woman dealing with endometriosis has faced this question at some point in her journey. It may be a question she has asked herself, as she navigates treatment options, perhaps having tried many treatments that have not worked. Perhaps her doctor has stated it as the only possible next step. Or, friends and family members have suggested it, thinking that it is a cure for endometriosis. Sometimes, endometriosis patients feel pressured by those around them to consent to this surgery. And sometimes endometriosis patients are so desperate to find a solution to the never-ending pain that they just want “everything out” and to not have to deal with it anymore.

Does Hysterectomy Cure Endometriosis?

If you are considering a hysterectomy to manage endometriosis pain and symptoms, the first question that needs to be asked is how effective is a hysterectomy in curing endometriosis? There have been some studies published that address this question. The rate of symptom recurrence varies quite a bit depending on the study—from 19 to 62 percent, when at least some ovarian tissue was conserved. One major reason for persistent pain after hysterectomy for endometriosis is incomplete removal of endometriosis lesions at the time of hysterectomy, and thus, the reason for the variability between the studies likely reflects, at least in part, the differences in surgical skill at completely excising all endometriosis lesions.

What about Removing the Ovaries?

When both ovaries and both Fallopian tubes are also removed at the time of hysterectomy (bilateral salpingo-oophorectomy, or BSO), the risk of symptom recurrence is lower, but still present, at 8 to 10 percent. Again, complete removal of endometriosis lesions at the time of hysterectomy improves post-operative outcomes.

Many endometriosis patients who have had hysterectomies and bilateral oophorectomies for endometriosis are reluctant to take hormone replacement therapy (HRT) for fear of stimulating any endometriosis tissue that may have been left behind. This question has not been addressed comprehensively with published studies. The risks of HRT related endometriosis growth depend somewhat on whether any endometriosis tissue was left behind at the time of hysterectomy. The risks of HRT in general, however, cannot be dismissed. Studies have shown a higher incidence of certain cancers, gallbladder disease and cardiovascular events. Despite these risks, medical consensus suggests the benefits of HRT outweigh the risks. The disparity between the research and consensus means each woman should weigh the risks and benefits carefully.

Complications Associated with Hysterectomy and Oophorectomy

What are the risks and potential long term complications of hysterectomy, or hysterectomy plus bilateral oophorectomy? A large study of almost 30,000 nurses undergoing hysterectomy for benign (non-cancerous) diseases showed that hysterectomy plus BSO is associated with an increased risk of death from all causes, increased risk of fatal and non-fatal heart disease, and increased risk of lung cancer. Hysterectomy can cause pelvic floor dysfunction, and can negatively impact bladder function: the risks of urinary incontinence and vaginal prolapse increase significantly post-hysterectomy, although these complications usually do not develop until 10 to 20 years later.

Hysterectomy plus BSO causes surgical menopause, which causes an abrupt cessation of hormones, compared to the gradual process of natural menopause. This can result in more severe menopausal symptoms, such as hot flashes, vaginal dryness and irritation, and decreased sex drive or other problems with sexual function. In addition, the beneficial effects of the small amounts of hormones that continue to be produced post-menopause from the ovaries are gone in women who have undergone BSO. Removal of the ovaries can be devastating for some women, as observed by the personal stories shared on Hormones Matter.

Hysterectomy with or without BSO is associated with increased risk of heart disease and osteoporosis. The risk of both of these diseases increases after natural menopause, and therefore the reason the risk may increase in even in women who keep one or both ovaries at the time of hysterectomy may be partially because hysterectomy itself is associated with earlier menopause– on average by 3.7 years, when both ovaries are conserved, and by 4.4 years with unilateral oophorectomy. BSO and unilateral oophorectomy are also associated with an increased risk of Parkinson’s disease, cognitive impairment/dementia, and depression and anxiety. New research suggest the loss of hormones post oophorectomy, estradiol in particular, is detrimental to mitochondrial functioning. Mitochondrial injury is believed to be the mechanism by which post menopausal, surgically menopausal and chemically menopausal (Lupron and Lupron-like drugs) women develop a high rate of cardiovascular and neurological disease.

Things to Consider before Hysterectomy

Before a hysterectomy is considered as a treatment for recurrent pain or other endometriosis symptoms, other potential causes of pelvic pain should be considered. Pain can be from recurrent, or more likely, persistent, endometriosis, but there are many other conditions and diseases that can cause pelvic pain, such as adhesions, pelvic floor dysfunction, adenomyosis, interstitial cystitis, and nerve pain. Of these, adenomyosis is the only condition that will improve with a hysterectomy, and for some of the other conditions, a hysterectomy may cause worsening of the problems. It is a good idea to discuss all the potential causes of pelvic pain with a doctor or a team of doctors familiar with all these conditions to try to ascertain whether hysterectomy is the best potential treatment for your medical condition.

Many patients have a combination of causes contributing to their pelvic pain and other symptoms, so it can be very complicated to weigh the potential benefits against the risks. In addition, it is my opinion that given the risks and long-term complications of hysterectomy, the first line surgical treatment for endometriosis should be laparoscopic excision of all endometriosis lesions, with conservation of all reproductive organs if possible.

As someone who interacts with many endometriosis patients in my work with The Endometriosis Network Canada, patients on both sides of the hysterectomy question have told me that they feel judged for the decisions they are making or have made. I don’t believe that anyone should be judged for making the best decision they can make, taking into account their own personal situation and, preferences. However, I do want everyone making this decision to be fully armed with accurate information, so that they can make the best decision possible in what is usually a very complicated situation.

Wish Me Well – Hysterectomy Looming

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As I embark on my surgery in a couple of days, I have come to terms with the fact that I could possibly wake up with the hysterectomy I have wanted for 5 years. I will not know for sure if the doctor will do the hysterectomy, as she is not willing to do the procedure unless there are complications. Is it bad to wish for complications? I want it all out. I have weighed the pros and cons. I know the hysterectomy provides only a 50/50 chance of getting better, but I am done with this disease.  Fifteen years of suffering with endometriosis is enough.

I am afraid of what will happen to my hormones after the hysterectomy.  I am not quite prepared for the wrath of raging hormones.  Maybe I will just wake up with the tubes and left ovary gone.  Maybe I am not yet facing the reality of what may come. I have begged and pleaded for a hysterectomy for so many years, but for some reason they would not do it.  My doctor wants to try removing my tubes first and my left ovary to see what happens. I guess she is right. I should try this surgery one more time because my first surgery was so successful, in 2007.  If it wasn’t for the post-surgery pelvic inflammatory disease that wreaked havoc on my insides, maybe I would be feeling better now.

I just don’t want to have another surgery after this. After this I am done and that is why deep inside I hope she removes everything.

This is a difficult decision to make, probably just as difficult as having to pull the plug on someone you know is not going to make it. You sit there with that thought in your mind “What if?” It is one of the most serious decisions of my life. I can’t take it back if it all goes wrong. I have to live with it.

The truth is, all the side effects don’t matter to me right now at all. I don’t want my woman parts anymore. I don’t want to have to go back and forth for all the tests only to end in tears and to be rejected my doctors who show no empathy when it comes to the survival of this disease. This choice is my decision to make mine and mine alone. I have listened to so many people and read so many stories but, in the end, I am sick of the cycle, sick of this disease, sick of the drugs, and just sick and tired of being sick and tired.

If she does not remove everything and I have no relief after this surgery, I will be looking for a surgeon that will remove it. I am 100% sure about this. I wasn’t sure before.

Thank you everyone who posted their thoughts, encouragement and concerns.  I took them all in and made my decision. I just needed to be at peace with it. I am now.  Wish me well. I will post again after the surgery.

My surgery is scheduled for February 28th.