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Endometriosis And Suicide

Please note:

My purpose for writing this post is not to initiate a philosophical, religious, or ethical discussion about the topic of suicide. My purpose here is to address the traffic that my blog has been receiving on a daily basis. For several months now, my blog has been receiving daily traffic from people searching phrases such as “endometriosis and suicide” or “suicide endometriosis”. This may be a taboo subject but I can’t remain silent about it.

suicidepreventionlifeline.org

I have written about this topic previously here: Endometriosis and Suicide: Awareness and National Suicide Prevention Lifeline.

Recently, I learned through an endometriosis organization of yet another endometriosis patient having committed suicide. Also, this post In Memory Of An Endometriosis Patient has been receiving multiple visits in the last week. That post was about Kristi An Rose (March 11, 1978 – May 7, 2009). Her obituary is here from the Kokomo Tribune.

When the local endometriosis support group I started met monthly (2001- 2008), I got to know a woman who made multiple suicide attempts. (She has endometriosis and co-existing conditions to it and has debilitating pain).

It is very common for chronically ill patients to become depressed. While this (depression) is common with many chronic conditions, I am focusing on endometriosis in particular for this post because of the type of searches that are resulting in people landing on my blog. (Depression is a risk factor for suicide).

Endochick and I have talked extensively about the topic of blog traffic searching on phrases like “endometriosis and suicide” because she too has been getting daily traffic of the same sort I’m getting. We are concerned about the daily traffic regarding “endometriosis and suicide”.

The following award-winning video was posted on the National Suicide Prevention Lifeline site. After you hit play, I encourage you to click the option to view the extended version (about 15 minutes long).

Yesterday, when I checked the traffic statistics for my blog I was alarmed to find that “endometriosis and suicide” was the most-searched term that led people to my blog and “suicide endometriosis” was third-most-searched.

I feel I have a responsibility to continue to speak up about the 24 hour hotline (which is free of charge). Chronic pain/illness can lead to depression which can lead to suicidal ideations. However, help is available. If you are having suicidal thoughts, please call the hotline above 1-800-273-TALK.

After extensive searching online (hours), I was unable to find any research papers on endometriosis and suicide. Considering the amount of traffic this topic is generating online, I was hoping to find some research about it. The fact that I was unable to find any such research tells me that researchers have not paid enough attention to this issue. (When I widened my search to “chronic pain and suicide”, I didn’t fare much better).

The following is a quote from Matthew K. Nock (article below).

“Studies have repeatedly shown that most (>90%) of those who die by suicide have a mental disorder like depression, anxiety, conduct disorder, or substance use and so it is important also to screen for and treat these problems”.

While I’m fully aware of this statistic, my concern is that patients with chronic illness/pain (such as endometriosis patients) may not ever get properly diagnosed with, say, depression. After all, so many doctors treat their physical condition (endometriosis) as if it is some sort of psychosomatic condition that endometriosis patients are probably more likely than most NOT to seek treatment if depression does occur… because they may have spent many years trying to convince doctors, loved ones, and themselves that their problems are PHYSICAL. However, there is nothing saying they might not have physical and mental health issues.

Here is the Boston.com article I just referred to:

Matthew K. Nock’s work on Preventing suicide

This excerpt from the above article really surprised me… “more people die each year by suicide than by homicide or war”. In the comments to the article, he referenced statistics from the Centers for Disease Control. The statistics are startling.

Here is the CDC’s .PDF file called Suicide: Facts At A Glance.

As per the CDC link above, in 2006:

“More than 33,000 suicides occurred in the U.S. This is the equivalent of 91 suicides per day; one suicide every 16 minutes or 10.95 suicides per 100,000 population”.

Those numbers really jumped out at me. The notion that more people die each year by suicide than by homicide or war is mind-boggling.

Please, if you are having suicidal thoughts… seek professional help. Calling the lifeline listed above is a way to get started if you don’t know how to go about navigating the behavioral health care system.


This post was written by Jeanne at http://chronichealing.com. Copyright © Jeanne — chronichealing.com. All rights reserved.


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Reading: Endometriosis And Suicide

13 comments

1 DianeNo Gravatar { 06.18.10 at 4:39 pm }

It is unfortunate that you had to write this extremely important post, but thank you for doing it.

Endo is very stressful, both physically and psychologically. However, help exists for people who are overwhelmed, and you have provided some very useful resources here. For those who are not suicidal but feeling sad or anxious, the Australian website Beyond Blue is full of useful information.

2 JeanneNo Gravatar { 06.18.10 at 6:45 pm }

Diane,

You’re right. Endometriosis is stressful both physically and psychologically. As you indicated, though, help is available.

Also, thank you for the link to the excellent Australian site. I took a look at it and it has lots of helpful information.

Jeanne

3 JennNo Gravatar { 06.23.10 at 3:50 pm }

Thank you for writing about this taboo topic Jeanne. It is very sad that information & research are not available on this topic. It is great to bring awareness to this on your blog. I wouldn’t have guessed that you receive traffic on a daily basis from that search. Thanks for bringing it to my attention. I am inspired to think about this & ways I may be able to help.

I hope those in need will find this post, know they are not alone & find the help they deserve.
.-= Jenn´s last blog ..TWO WEEKS POST-SURGERY =-.

4 JeanneNo Gravatar { 06.24.10 at 1:51 am }

Jenn,

Thank you. The first time I ever wrote a post regarding a suicide hotline, it was because an endometriosis patient who was having suicidal thoughts came to my attention. (To make a long story short, she and I connected directly offline and that is how I became aware that she was having such thoughts).

The interaction with her combined with having met endometriosis patients in my local support group who had attempted suicide was what first prompted me to write about the National Suicide Prevention Lifeline (1-800-273-TALK). Obviously, I write about endometriosis often.

Over time, since I have written about both topics, people searching phrases like “endometriosis and suicide” began landing on my blog regularly. Like me, Endochick was alarmed by this (and she too has written about suicide prevention). So she has also gotten this type of traffic on her blog.

As time goes on, she and I have been getting more and more visitors who have searched on these topics and then reached our blogs. Like me, she is noticing such blog traffic daily. She and I have discussed this many times as we are concerned about the sheer number of people searching on this topic… and, obviously, we want to do anything in our power to encourage people to seek professional treatment. I recently added a graphic to the National Suicide Prevention Lifeline to my blog’s sidebar. Endochick has done the same. My hope is that this simple step of installing such a graphic might encourage someone who needs support to call the lifeline.

As far as the difficulty I had finding research on this topic, it is concerning. I suspect that many chronically ill patients (not limited to endometriosis patients alone) who do commit suicide are not registered in the research or statistics because the cause of death is likely stated generically as “suicide”. Therefore, any researcher who wants to track cases of suicide that are preceded by chronic illness/pain would probably have to do some real investigating to determine that a given death was in any way related to that person having had a chronic illness.

Chronic illness/pain often leads to depression. Depression can certainly increase someone’s risk for suicidal thoughts. I’m not sure what the answer is (to the apparent lack of research on this topic) but I do know that I want to do what I can to raise awareness of this serious problem.

Please let me know if you have any ideas for how we might be able to help the cause of suicide prevention. While I’m fully aware that I am not qualified or trained to manage situations involving patients who are suicidal and would never dream of getting involved in anything “out of bounds”, I think that by making people aware of the National Suicide Prevention Lifeline (at 1-800-273-TALK) it can increase the odds that someone out there might be more likely to call that lifeline than if they hadn’t been aware of its existence. If even one person finds that lifeline helpful (on any level), then it will be well worth posting it!

As far as people finding this post, I just now Googled “endometriosis and suicide”. Now that I have done several posts that include the search word “suicide” and because I have done so many posts about endometriosis, my blog is currently coming up as the 3rd and 4th links on Google. I personally believe that the reason I’m getting so much traffic about this is that it is (sadly) an all-too-common search phrase (problem) and I think it happens to be resulting in people reaching my blog because of what I’ve blogged about previously. So, I feel a responsibility to periodically post about this since the daily traffic on it is steady (or even increasing in volume).

Thank you for your kind words, Jenn. Your caring and compassion shine through in everything you write. I hope that anyone reading this who feels alone, isolated, and/or helpless about how to live with chronic pain/illness (or for any other reason!) will call the professionals trained to deal with these situations. Help is available. One of the things I liked about the video were some thought-provoking posts (in the extended version).

Quotes that stood out for me from the extended version of the Terry Wise (National Suicide Prevention Lifeline) video:

(All quotes below are from Terry Wise)…

“Life became like an endurance test… it was just a fight for survival”.

“I went to her (the psychologist’s) office with the hope that maybe there was some way she could help me to tolerate being alive”.

“Suicide doesn’t stand alone. It doesn’t just happen as a result of nothing out of nowhere. It’s the result of something”.

“The most crucial component to my therapy was compassion”.

“You can always reach out for help. There is always someone there that will offer support”… “Ideally, it would be nice if we could all have our own individual therapists with unlimited mental health benefits but that isn’t really the reality for a lot of people. She then goes on to mention resources that are free of charge (such as the National Suicide Prevention Lifeline, mental health support groups…)”

~

Jenn, thank you. With you too thinking about ways we can help get chronic illness/pain patients (such as those with endometriosis) connected with professionals who can provide them with needed support, I believe we really can possibly reach people who might not have been sure where to turn otherwise. With a lifeline available (in the U.S.) 24 hours a day and 7 days a week, it can only help to spread the word about it to people.

***Perhaps non-U.S. readers can share here any similar resources (to the lifeline in the U.S.) that they’re aware of?

Jeanne

5 Amy KNo Gravatar { 06.24.10 at 9:50 pm }

As an avid supporter of suicide prevention and someone who deals with chronic pain, I just can’t tell you how important I believe this post is!

You are exactly right, the statistics don’t show the link, that link between chronic pain and illness and suicide. There is the factor of depression, (or other mental illness) that is considered the cause of suicide or suicidal behavior. The preceding factors are often over-looked. I am not sure how we go about finding out the statistics, but I can tell you that I believe you are right on about the high risk of those who deal with chronic health/pain issues. We are at greater risk of developing mental health issues/illness. We are at a greater risk of experiencing depression and therefore at a greater risk of experiencing suicidal thoughts, ideation, etc. Informing people about resources like Lifeline is priceless and perhaps the most valuable thing you can do, in my opinion.

The impetus for my work with suicide prevention was a story I read and connected with about a young girl who seemingly died by suicide due to her severe chronic pain and the lack of support and compassion she received from family and physicians. I personally attempted to take my own life after experiencing severe depression due to the pain and diagnosis of Fibromyalgia.
Thank you for bringing attention to this issue. Thank you for sharing the word about the amazing work Lifeline does. There is help out there and we need to continue to make others aware of the resources!
.-= Amy K´s last blog ..Wearing Pain =-.

6 JeanneNo Gravatar { 06.25.10 at 12:14 am }

Amy,

Thank you for taking the time to comment on this very important topic. You are I are on the same page regarding just how important it is to get more awareness for suicide prevention.

I saw your related post here:

The Number Everyone Should Know

I wish I knew of a way to get reliable statistics that reflect the connections between chronic illness/pain and suicidal ideations, attempts, and deaths. I agree that Lifeline (a 24/7 lifeline, open 365 days per year with trained staff to handle calls regarding suicide) is an important resource.

I know that you have done lots of advocacy work for suicide prevention. Your efforts are commendable working on this very important cause.

While I knew you had attempted to take your own life, it still causes me to tear up when I try to imagine what state you were in then. I’m so, so sorry for your pain!

Yes, there IS help out there and helping people who need to find it is key.

Amy, I’m sending positive energy and prayers your way. Thank you for stopping by with your feedback on this important topic. Your courage in speaking the truth and being so candid is a wonderful asset that helps many.

Jeanne

“Courage is the most important of all virtues, because without it we can’t practice any other virtue with consistency”.
~~ Maya Angelou

P.S. Amy, I’m no longer on Twitter anymore. So, please don’t be shy about retweeting this post. ;)

7 Amy KNo Gravatar { 06.25.10 at 12:39 am }

Dear Jeanne,
Thank you so much for your thoughtful and kind response to my comment. It is so wonderful to be connected to be health activists such as yourself. It’s a real blessing.

I just tweeted about your blog post and will hope to keep spreading the word about it. We are kind of like a family, those of us who support one another and each other’s causes. They all have a common ground: pain and a desire to heal. That pain brings us closer as does the desire to heal. Helping each other along the road is just what we do, no matter the condition.

Ultimately, that pain and desire to heal can also lead to awful circumstances where the pain seems too much and our mental health is at stake.

Together we can keep helping others and with the help of the amazing resources that are available. Also, I believe it is important to find a way to share with the public the severe effects chronic pain/illness can have on our mental health.

Off of my soapbox now, what I mean to say here really is simply “Thank You”, thank you for your friendship and support.

Wishing you wellness,
.-= Amy K´s last blog ..Wearing Pain =-.

8 JeanneNo Gravatar { 06.25.10 at 1:10 am }

Dear Amy,

Thank you. Likewise! ;)

Thank you so much for tweeting this. I just looked at Twitter a moment ago and saw it. I really appreciate you doing that! Yes, I agree about fellow patients becoming like family as we work together to support each other’s causes and to provide mutual support. I agree. Pain and a desire to heal cross the gamut and are a common thread for all sorts of illnesses. Yes, helping each other along the road is a win-win!

True. Thankfully, resources like the National Suicide Prevention Lifeline are available 24/7, 365 days/year.

Yes, awareness and education is sorely needed.

Again, thank you. Ditto.

You too!

Jeanne

9 SamanthaNo Gravatar { 12.06.11 at 5:51 pm }

My name is Samantha, I am 26 years old and have felt with both endometriosis and kidney problems, on both sides for years. I too did a search on suicide and endometriosis. Im in chronic pain, pain so severe it is impossible to describe. My last surgery to get rid of endo they saw it has spread and to my kidneys of all places. The doctors have said we don’t normally prescribe pain meds for endo, its not going to kill you, they say. The urologist point to obgyn to fix it, and obgyn points to urologist to fix it. It’s a combination of both. It’s hard to explain how it feels to someone, and doctors take it lightly. There should be more support groups, more info available on it, and doctors should be more educated on it. Suicide has def crossed my mind, not that I want to die, but I need a “break” from the cronic pain. Its depressing never feeling well, you don’t go out, you end up curled up in a ball at home. I actually lost my job, because of being in pain, sick, can’t answer phones and talk when a cyst is breaking every fifteen minutes.

Well, just came across your site, there should be more like it!

Samantha

10 JeanneNo Gravatar { 12.07.11 at 1:36 am }

Welcome Samantha!

First, let me say that I’m so very sorry for your pain! In my experience the only people who really seem to understand, generally speaking, just how severe and debilitating chronic pain can be (regardless of what illness or illnesses are causing the pain) are the patients who live with it. It is nearly impossible for others to comprehend, it seems. Loved ones may try to understand. However, few people who lack firsthand experience with severe chronic pain seem to fully comprehend it.

Before I continue, let me refer you to my disclaimer page because I will be listing some treatment methods that some endometriosis patients I know have found helpful for reduction in endometriosis pain but I am not a medical professional and am not dispensing medical advice. I just want to list some things you may not have investigated – because you are obviously in a great deal of pain (and because I am all too aware of the limits of Traditional Western Medicine because my own experience forced me to learn about other modalities for treating endometriosis).

I’m sorry that your pain is so severe and I’m even sorrier that, from what you have described, it sounds like you don’t have anything effective for relieving the pain. (Does anything give you any pain relief?)

There is a massive need, in my opinion, for medical schools to vastly improve the training doctors are given about endometriosis (for those that get any!) Pain management for endometriosis patients is obviously something in which far too few doctors are well-trained.

There are doctors who do prescribe pain meds for endo. Finding them can be challenging (more so in some geographical areas than others). Also, pain meds can work very differently from one person to another and some endo patients (myself included) have found that pain meds (even powerful ones) aren’t particularly effective and/or tolerated (i.e. side effects, allergic reactions, sensitivities, etc.)

However, if a doctor is unwilling to prescribe pain meds while not offering any other reasonable options for dealing with the pain… it can be worth getting a second opinion from another health care provider to try to find something (not necessarily just pain meds) to attempt to reduce pain and improve quality of life.

Sadly, it often falls on the patient to hunt down the resources! It can be overwhelming and frustrating to do this. However, in my personal experience – and in witnessing what many endometriosis patients I’ve met (both locally and online) – the “hunt” for resources can sometimes have a worthwhile payoff. (I don’t mean anything magical and there is obviously no cure for endometriosis). I’m talking about finding ways to reduce the pain (and other symptoms) as much as possible.

From what I’ve seen, it (significant pain reduction) seldom comes ‘bundled up’ in one place. For example, pain relief could come from a combination of alternative medicine modalities (i.e. acupuncture is very helpful for many patients I know [myself included!], dietary changes help some endo patients, specialized physical therapy for pelvic pain [which isn't available in all geographical areas] can be helpful, Chi Nei Tsang, Maya Abdominal Massage, homeopathy, chiropractic, heat, ice, etc. Combining a bunch of different things can really matter. If one thing brings 10% pain relief and another brings 5%, the 15% pain relief total is better than none.

I have a hard time with doctors telling endo patients, “it’s not going to kill you”. This is a pet peeve of mine. I understand that endometriosis, in and of itself, is not an illness that causes death. The thing is that I believe endo patients hear this sentiment far more than patients with other serious-but-not-fatal illnesses. Personally, I believe one big factor for this is sexism. There is a long history of patronizing, condescending attitudes towards women who are “just having female problems”. If you look at the root word of “hysterical”, it’s interesting. (Think “hysterectomy”). The ridiculousness of endometriosis being so under-researched and under-funded is very frustrating. It is to me, at least. But I digress.

You are quite right that doctors too often point fingers at each other and treat the endo patient like a ping pong ball. I don’t know what’s available in your geographical area but there is a urogynecology subspeciality nowadays. In other words, a doctor trained in both GYN and urology. I don’t know if you have such a doctor near you who is skilled at endo but I just thought I’d throw it out there. Alternatively, if you should have any surgery in the future, it might help to assemble a team to operate together. For example, in 1996 I had a laparotomy (major surgery) where my colorectal surgeon did a bowel resection and the doctor treating my endo removed endo during the same surgery. Rather than 2 surgeries, 2 bowel preps, and 2 recoveries… I had 1 of each because they scheduled it to be done all at once… with 2 surgeons.

You are right that the need for support is great, the need for info is too, and absolutely there is a huge need for doctors to be better educated about many facets of endometriosis. As helpful as I found local support group meetings (monthly from 1992 – when I was finally diagnosed – through 2008), I have to say that from 2008 through present I have found enormous amounts of info/support online. Just as with in-person support at times, there is misinformation about endo online. So, weeding through and sorting the valid info from the misinformation can be challenging. However, I have found some amazingly helpful endo patients online. (that’s not to say I didn’t meet some awesome women locally, of course!) Just know that you are far from alone. There are millions and millions of women with endo and the number of them active online is just amazing.

I have lived with endo for almost 30 years. There is SO much more info readily available to patients now. It’s incredible. It used to be so much worse before the Internet. That doesn’t mean that it’s not very frustrating now for other reasons. (Due to the vast amount of misinformation about endo online, it takes lots of time to sort the valid from the invalid).

I am sorry that you have struggled with thoughts of suicide. If you ever have thoughts of suicide, please check out the suicide prevention hotlines included in this post: Suicide Prevention Hotlines. The hotlines listed there are located throughout the world and are sorted by geographical area. As I mentioned in that post (which is more recent than this one we’re posting comments on), I took a class on suicide alertness and I believe very strongly in the importance of referring people who are having thoughts of suicide to the suicide hotlines equipped to handle it. It’s vital.

Many of my readers are housebound due to various chronic illnesses. I know it may be small comfort but there are millions of chronically ill patients who are in such situations (from a variety of chronic illnesses). What I’m trying to say is that you are not alone by any means. There are thriving online communities – many of which have large numbers of housebound patients. If talking with others who struggle with similar issues would be helpful to you, let me know and I can try to connect you with other patients with similar issues. While you may definitely run into fellow patients right on this blog, I can help link you up with people on Facebook too… if you like.

As far as losing your job is concerned, I’m really sorry. My career blew up in smoke (thanks to my health problems) a few years back and it was very, very difficult. I know how difficult it is to have that happen.

I’m really sorry about the cysts bursting.

I’m so glad you found my blog. I hope you find it helpful. Please browse around when you feel well enough. There are 3+ years of blog posts on various topics. Thank you for your kind words. I hope you’ll stop back. I’m quite sure you can meet other patients here who are insightful, compassionate, sweet, and funny. We have some amazing people who post blog comments on this blog! Thank you for your feedback. I hope to hear from you again soon!

Jeanne

P. S. Everyone is different and what works for one may not work for another (treatment-wise). I just wanted to say that for me personally… acupuncture has helped me immensely!! Over the years, I had 7 surgeries and countless drugs (for endo). For the past 11 years, I have had regular acupuncture and I have to say that it has helped me too much to put into words. I know many endo patients with similar experiences. Oh… it helps with mood too. Many patients find it helpful for depression. So, I always share that info with people who have uncontrolled pain… just in case it might help them!

11 JessicaNo Gravatar { 01.08.14 at 11:17 pm }

I finally googled endometriosis and suicide due to the fact that I have suicidal thoughts and have been battling it severely. I have had quite the worst ‘”Endo” experience and not being able to conceive has made matters worse. At this point i do not know how I am going to find happiness and fulfillment the rest of my life. I am an example.

12 JeanneNo Gravatar { 01.09.14 at 2:36 pm }

Welcome Jessica!

Thank you for your feedback on this post. I am very sorry to hear that you are having suicidal thoughts.

It is important to seek help for this. If you are in the United States, please call 1-800-273-TALK to talk with a trained professional. If you are located outside the U.S., please refer to the worldwide hotlines referenced in the right sidebar of my blog.

I am really sorry that you are struggling. It is good that you are looking for resources. I’m sorry about your bad experiences with endo and the trouble conceiving.

You are not alone. There are many people living in similar situations. If it is any comfort at all to know that others can empathize with you, just know that there are many who can do so.

Try to take one day at a time, if you can. Anyone can get overwhelmed by concepts such as “how am I going to find happiness and fulfillment the rest of my life”. Please try, if possible, not to overwhelm yourself with looking too far down the road right now. I hope you can get linked up with the support you need to get you through this difficult time. There are some amazing counselors out there who can help immensely. In the city nearest me, I had the good fortune to meet two therapists who are specially trained in infertility, gynecological issues, and grief. If you can find such a therapist in your area, it could really help you cope with what’s happening and process the complicated emotions you are facing.

Thank you for sharing a bit about yourself here. You never know who your words might reach/help!

Please consider posting here again. I wish you the best. Please remember that help is always out there and there are trained professionals who really care and whose job it is to help people cope with thoughts of suicide. Please don’t ever hesitate to reach out to a hotline for support and to seek out a qualified therapist in your area. On the latter, if you run into any snags with insurance coverage for the latter… many teaching hospitals can get you connected with a therapist using a sliding fee scale. Depending on income level, such services (with qualified therapists) can even be free in some cases!

Take care!

Jeanne

13 DianeNo Gravatar { 01.09.14 at 5:26 pm }

@Jessica – As Jeanne said, it’s important and possible to get help for this. I have stage IV (the most severe stage) of endometriosis, and I also cannot conceive. It has taken me years to work through it, and it’s still an ongoing process but I speak from experience when I say it can get easier and your life can feel like it’s worth living again.

Please reach out for professional help, and arm yourself with education about our disease – knowledge is power!

Love and peace,
Diane

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