Endometriosis and Suicide

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endometriosis and suicide
It was a regular morning. I was drinking tea and checking my emails and Facebook messages, getting started with my work day. A Facebook notification flitted across my page cheerily: “It’s your friend’s birthday. Wish her a happy birthday. Help her celebrate!” Suddenly my day took a different turn. I did write on my friend’s Facebook wall, but she will never see it. She had committed suicide 8 months earlier because of daily, severe, chronic pelvic pain associated with endometriosis.

My friend’s story is, sadly, not that uncommon. We know from published research studies that the incidence of depression and anxiety in women with endometriosis is high. No formal research studies have addressed the incidence of suicide in this population, but in a survey done by Endometriosis UK, they found that 25 percent of women with endometriosis had contemplated suicide. I personally am familiar with several such tragic stories.

My friend, like most women with endo, had a long delay before being diagnosed, and then had a lot of ineffective treatment after that. She eventually had excision surgery and a hysterectomy, but complications of that surgery caused her to have severe daily pain afterwards. Although the best endometriosis surgeons will continue following their patients post-surgery and help them sort out continuing pain problems, some surgeons will wash their hands of pain that persists after surgery. My friend tried hard to get doctors to listen to her and help her, but in the end she was left alone with daily suffering, and ultimately, she couldn’t deal with it any more. As Nancy Petersen, endometriosis advocate and RN, has said: “Endometriosis is not fatal, but despair can be.”

We have a long way to go to change the way our health care system deals with endometriosis, which is currently failing many women with this disease. From long delays in diagnosis, to persistence of medical misinformation about the disease, to poor access to quality multidisciplinary care—all of these areas and more need improvement. In the meantime, women are still suffering, feeling like their quality of life will never improve, and feeling hopeless and depressed about their futures.

I want to urge women feeling severely depressed or having suicidal thoughts to speak up to someone about how they are feeling. It is not a sign of weakness to say you are having trouble coping, feeling depressed, or overwhelmed. Many women with endometriosis deal with a whole lot of crap on a daily basis, and most human beings have their limits on how much crap they can endure. Please confide in a friend or family member, or your doctor. If you prefer to talk to someone who doesn’t know you, click here for a list of international suicide helplines. Your family and friends do not want to lose you.

If you are the friend or family member of someone who has told you they are suicidal or who has expressed suicidal thoughts, please insist that they seek professional help even if they don’t want to. You can help them by listening empathetically and non-judgementally, but anyone in a crisis needs professional help. If you need assistance in finding an appropriate professional, you can reach out to a local endometriosis organization, or to local suicide distress centers.

Despite my friend’s daily struggles, she always had a kind uplifting word for others. She signed most of her messages to me with “gentle hugs.” In her memory, I would like to extend gentle hugs to everyone struggling with depression as a result of pain or illness.

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37 Comments

  1. Its an older article I read before and again reading it now, because I’m sick and feeling hopeless, but afraid to let myself go into this dark space possibly in an hour or so when my pain starting to get severe…I’m praying it will not.

    Dr. Bridge-Cook if you are checking this comment session. I am hoping you can give me a pointer or referral since you are in Canada and in Toronto area.

    Very very long but typical story short, I have severe pain since I was teenager. The pain was so bad that I would vomit and drift in and out of consciousness, hallucinate sometime. I wasn’t able to eat anything and was missing work back in 2005. After 5 years I finally found Dr. Rosenthal who finally listened to me and diagnosed me for endo. In 2010, his team at North York General attempted to do the surgery but after they looked in, it was too severe and complicated, they couldn’t do it. He then referred me to Dr. Leyland when he was in St. Joseph hospital. After 8 hours of surgery, a removal of part of my bladder, they could not remove the lesion around the rectal area. Dr. Leyland recommended Lupron and Dr. Rosenthal recommended me try to have baby before the Endo comes back, once it is successful he recommended a hysterectomy to resolve future pain issue. I didn’t take Lupron due to cost, I was self employed and sole earner, my husband wasn’t working at the time, my health insurance wasn’t sufficient. Fast forward to 2017, I am 40, and my symtoms are back to where it was. The difference is, I am living in Newmarket, Dr. Leyland has moved to Hamilton, Dr. Rosenthal is too far away. Over the years I was too sick to work for too long, depress and no energy to work the capacity like before. Financially and emotionally drained. I’m looking for doctor in the Newmarket area and hopefully can have my surgery at Southlake hospital to bring some relief. At least I can take public transit. But I couldn’t find any endometriosis specialist here. If you know of any doctor in the area would you please give me a pointer.

    1. I don’t know of any specialist in that area specifically but Dr. Andre Laroche is in Woodbridge and is an excellent doctor with a lot of expertise in endo. He would be the one I would recommend who is closest to you. For more information about doctors, and for support from other women who understand your suffering, if you are on Facebook, The Endometriosis Network Canada has a support and education group: https://www.facebook.com/groups/TheEndoNetwork/. I hope you can get some relief soon.

  2. I told my last pain doctor about my suicidal thoughts, being honest, and he dropped me! Now I am without pain medication and up at 4am researching ways to die. Anything is better than endo pain. Telling us to tell our doctors is laughable when they threaten to take away our medication (which mine did) or institutionalize us. I have had 4x surgery in 10 years

  3. Wow! That article was spoken as if it was pulled right out of my life! I am an endometriosis sufferer & was blessed to have survived a suicide attempt! I wish that I can help those in these shoes, so that I can talk them out of ending their lives & learning how to take over their own minds!

  4. My daughter was diagnosed with endo about 6 years ago, at age 24. She has had over 20 surgeries, most with excision, and has abdominal adhesions which are so severe. Gall bladder, appendix, and all female organs removed (complete hysterechtomy at age 26. She has since been diagnosed with lupus, fibro, rhematoid arthritis, and most recently, epilepsy. She moved back home with my husband and I after graduating from college and working one year. She suffers from so much pain and has to take oxycodone for relief. We live in Texas, and I can’t begin to tell you about all the snarky comments made by health care “professionals”, and I quote, because their attitude is anything but professional. She has so much to deal with; I am willing to move anywhere where she could enjoy a better quality of life. There are just no options for her here, and no one with any expertise or understanding. Her gyno is about the only one in Texas who knows anything about it, and he is now no longer accepting insurance. The comments made about her oxycodone prescription are just unacceptable, by nurses, our pharmacist, and emergency room personnel. As we try to explain–it’s not her choice; it’s just all they have to offer. She only takes the prescribed amount, but it’s just a mess. We have also found a great deal of prejudice in dealing with multiple illnesses. As if anyone would choose this life! She is treated as a hypochondriac and a person with mental problems. Any input would be appreciated. As a sideline, a doctor put her on Lupron before her hysterectomy, and she had an allergic reaction to it(thank God)

    1. I just read this article and your daughters story was the first comment after it. I am 33 and have struggled with Endo diagnosed for many years. Now that i know what i have my story and your daughters story sound so familiar. I just want to tell you that i dont anyone to take care of me like you are doing. So i just want to thank you for being understanding and thank you for puttin gyour story out there. you guys are not alone. this disease has made me into everything i am not. I am fighting this with a passion and learn new stuff everyday. please give your daughter my info and let her know one of her Endo sisters are hear for her i would greatly appreciate it! thank you for being a wonderful mom and keep on keepin on we are right here with you xoxoxo

      1. Wow! I was going to comment pretty much the same as you! Her daughters story is exactly mine, I’ve had 12 surgeries, a hysterectomy at the age of 28 & have since been diagnosed with a list if illnesses. This is so sad that because this disease is not “fatal,” unless you suffer or know someone that is suffering, no one has a clue what it is or how many ppl have to suffer so badly that they no longer can be the person that want so badly to be! Or even worse, pushes people to taking their own lives.

    2. Dear Linda, come to Australia! The healthcare system is so much better and having private health has been a godsend or I would be in so much debt by now! I live in Adelaide down the very bottom of Australia and have been lucky to find helpful specialists for my endometriosis after seeing quite a few, but then being refferred on. My gynaecologist is wonderful and has done so much for me. Her name is Dr Fariba Behenia- Willison. Another doctor helping me is Dr Peter Tunbridge, he is trying to level out my hormones to help all my inflammation and pain so I can hopefully avoid a hysterectomy. I am 28 and have not had any children yet. When we tried by fallopian tubes became so blocked they had to be removed. I’m sure your doctors could email mine to get helpful information – especially from Dr Tunbridge given your daughter has multiple issues. He is well informed about all the bodies systems it seems. Tell your daughter not to lose hope its such a powerful feeling. I find being in water helps me alot whether its a bath, pool or ocean when you are in pain it feels good to be weightless.

  5. My heart goes out to you and her family. I was diagnosed when I was 20 had been suffering for five years by that point. I have gone through 9 surgeries, and many different drugs to help. It wasn’t until I was almost 40 that I found a doctor that put me on lupron injections, I had 3 injections at a cost of $1200.00 each. It was the best thing I ever did. The injections were the only way for me to go as the endo had spread so much that my bowel and blatter were now infected. I don’t live totally pain free but it has been 100 times better than it was. The depression is gone my moods are so much better it’s like I’m a new person. I wish she could have gotten the proper help, doctors need to start listening to their patients and not tell them it’s in there head or there is nothing else they can do.

    1. Hey Dena, my name is Valerie Im in Australia I have had adenmyosis and endometriosis for the last 3 years. I have my third surgery now Im in Chronic pain I have had the mirena but it hasnt helped. I cant hardly move or walk now cause i think the endo is in my hip and have had alot of adhesions too. Have you tried depo provera?? Im in so much pain and feel like my life is not worth living.

  6. So sorry to hear it had to come to this
    That she had to take her like life. I myself suffer 24/7 some days l cope some l wish l dont exist this pain is hell

  7. So very, very sad. Thank you for sharing her story, and for bringing to light the desperation that can accompany the severe pain and multitude of other symptoms that come with endo. It should not have to be this way for endo sufferers….women deserve respect, quality care, and accessible, affordable, effective treatment options. Thank you for advocating for women with endo.

  8. I dealt with Endometriosis for many years. I had a hysterectomy when I was 37. I did not get to have any children. I wish I knew then what I know now. Stop eating gluten, sugar and dairy.

    1. I was diagnosed with fibro at the height of my endo struggle, before I had excision surgery and hysterectomy (had adenomyosis as well. Since surgery, 90% endo pain- free. I didnt take it too seriously bc it was hard to distinguish symptoms from one or the other….I tended to blame it mosltly on the endo. Unfortunately, fibro still active & has worsened after a period of stress, including the emotional and physical stress of dealing with endo, surgery, and subsequent financial setbacks from the expensive surgery. I too truly believe there is a strong link between endo and fibromyalgia. Thankful that both conditions are receiving more research and becoming starrting to be taken seriously. Still a long way to go though.

  9. I think endometriosis has a strong link to fibromyalgia . For myself, my fibro flares were worst with the hormonal changes , twice monthly.

  10. I guess the highly hazoudous & toxic lupron found in the drug that gets injected into endo sufferes to put them through the menapauce as a lot to do with the mental health & wellbeing of endo suffers is the course of many adverse effects that any drug in this catogry would do given it is a chemotherapy & even thou a top proffesor in science whistle blew about the use of this in endo suffers as there wasn’t sufficient evidence or studies done to ensure the drug wouldn’t have adverse effects on the people using it ! The company were approached who made it & asked to have hazoudous & toxicity information so that patients & prescribers or care givers could be aware of its dangers of taking & admistrating it & even coming into contact 24 hrs later with the receivers bodily fluids could have detrimental effects for all concerned & that should be treated like any other chemo / hazoudous/ toxic drug , the makers refused as it would have impacted on the finacially as sold a lot & Drs who were aware of the effects chose to ignore as gave the a high revenue from the drug company aswel as the payment of the client ! All endo suffers need to join forces to get this drug banned or at least change the information that should be given to patients so they have a choice & be aware of long term side & adverse effects this drug can have on there health & well being !

    1. Lupron is poison! But it’s the day in, day out, unrelenting, excruciating pain that is causing so many women with Endometriosis to commit suicide!

  11. I was so sad to hear we lost her, I felt inept at the despair and pain with which she was having to cope. The system failed her, he death was not necessary, with adequate access and substantial skill this lady’s life could have soared.

  12. My 38 year old daughter has had 3 surgeries, including hysterectomy and appendectomy. Just like this woman, the doctor who did the last surgery kicked her to the curb and told her it isn’t possible for her to still be in so much pain since surgery. She has been to so many, many ERs and doctors and they don’t know anything about Endometriosis, so they all send her home and have all told her to take over the counter ibuprofen or tylenol. Kicked to the curb over and over again! I cried when I read this story, because it hits home with me. Not a day goes by that she doesn’t tell me that she’s going to commit suicide because the raw pain is 24/7 and torerous, and no one will help! I know she will do this but what will a suicide line do to help her? She’s desperate and suffering with no help in sight. There are only a few specialists in the US who can properly excise Endometriosisis and they don’t accept insurance. The surgery is expensive, not to mention having to travel and stay at hotels during the surgeries! My HEART BREAKS! She’s my baby girl and the Mother of two precious children (14 and 12) who have NEVER seen their Mother without excruciating pain! God help her! ?

    1. My heart breaks for your daughter and you and her family. I know the suffering all too well. The time, effort and resources necessary to pursue surgery by one of the few true excision specialists is enormous and overwhelming. But it is worth it. It got to the point that I was getting sicker and sicker by the month….1 halfway normal week out of 4 was just not acceptable to me to endure the rest of my life. I made the decision to pursue excision surgery by one of the top specialists. Took months just to gather my records over 10+ years and prepare my info packet for evaluation. Fortunately the surgeon was confident he could help me & dramatically reduce my pain. 4 yrs later, I am still 90% endo pain free. I cannot overstate how much it changed my life for the better. Unfortunately, the trade-off was setting myself back financially. I borrowed from my 401k to pay the upfront costs, and afterward, took on a part time job on top of my full-time job (at least I felt good and was able to do that!) and spent years paying off the rest of the bills. I’m single, so have no income but my own….still recovering financially. But wouldn’t have done it any other way. I was desperate and close to losing all hope. That surgery gave me my life back. I know it’s so daunting, especially if support and resources are scarce….but your daughter clearly has your support, and children who need her to be around for them. There is hope…I truly hope you will urge and help her seek an excision surgery specialist. I don’t know where you are, but Dr. Sinervo in Atlanta performed my surgery, and he is wonderful and highly regarded. I live in Charlotte NC so I did have to travel and stay in a hotel. Unless she’s lucky enough to live near a specialist, she will have to travel. If you haven’t already, visit Nancy’s Nook on Facebook…there is a list of excision specialists. I hope there’s one relatively close to your daughter. She has too much to live for to give up the fight…please urge and help her to pursue this option. Hugs and best wishes for your daughter, you, and your family.

      1. Debra, I’m so sorry to hear how badly your daughter is suffering. You’re right that no suicide helpline can change that–she really needs better medical care from a doctor/surgeon with a lot of experience in treating endo. I second Mary’s recommendation to check out Nancy’s Nook. You might find that you can figure out a way to get her better care. For example, some hospitals give discounts for patients paying in cash, and some have payment plans. Calling a suicide helpline or getting some counselling in place might help her cope until she can get better medical care.

  13. Thank you for sharing your friendship meant a lot to your friend I can also understand why your friend did thus having been there myself through hormones themselves and hormones do matter and so do hearts like yours xxxxx

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