Endometriosis and Risk of Suicide

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Philipa Bridge Cook
The alarming text came to my phone on a Friday afternoon: “I want to die.” It was from a friend with endometriosis who was suffering with intense pain again, and feeling like the continual suffering was unbearable. That text led to a visit to the ER, which ended up resulting in a three day hospital stay in a short stay mental health unit. Unfortunately, not much has changed: the cycle of pain continues, and my friend remains uncertain of how to cope with the severe pain which is sure to come again.

Sadly, this was not the first incident of severe depression and suicidal thoughts that I have been aware of associated with endometriosis. In the past month alone, throughout our support network I am aware of four other instances where people expressed suicidal thoughts and wanting to die because of the despair and hopelessness of dealing with pain that most people do not understand.  And many people with endometriosis continue to suffer in severe pain despite medical treatment, so it can be particularly difficult to be hopeful for a better future.

Chronic pain from any cause has been shown to be associated with depression. This is not a surprising finding, as anyone who has lived with pain for any significant amount of time will know that the social isolation, inability to participate in normal activities of daily life, and sheer exhaustion, can lead to feelings of depression and hopelessness. Patients with chronic pain have a two to five fold increased risk for developing depression, and each condition affects the other: depression can worsen the perception of pain, and pain can worsen depression. Furthermore, studies have shown that when pain is moderate to severe, impairs daily functioning, and is difficult to treat, it is associated with worse depressive symptoms and outcomes.

Although the association between endometriosis in particular with depression has not been studied, it stands to reason that endometriosis may be even more highly associated with depression than other chronic pain conditions. In general, pain associated with endometriosis tends to be dismissed by medical professionals and thus undertreated (for example, see this story). And people with endometriosis may not get the social and emotional support they need from those around them, because of a general lack of understanding of the disease and the effects it can have on a person’s body and spirit.

One study has examined the association between chronic pain conditions and risk of suicide. Most clinical pain diagnoses were associated with an increased risk of suicide, and the highest risks were for psychogenic pain (pain without a known physical cause, usually attributed to psychological factors), migraines, and back pain. It is particularly interesting, but maybe not surprising, that psychogenic pain posed the greatest risk for suicide in this study. Because psychogenic pain is defined as pain without known physical cause, it is impossible to treat the underlying cause, since it is unknown, and the pain symptom itself is probably undertreated by doctors who claim that the cause is all in the patient’s head.

This type of thinking will sadly be very familiar to endometriosis patients. Many of us have been told that our pain is all or mostly in our heads, or is psychological rather than physical (for example, see this story). Imagine the despair that can be caused by dealing with severe pain, worse than childbirth, month in and month out, or sometimes even every day, and being told by doctors that the pain was just in your head? Knowing it is not, and that without treatment you will have to live with this pain for the rest of your life? And imagine losing your job, or having your partner leave, because of your disease. It is easy to see why depression turns to hopelessness, turns to thinking you would rather die than live.

However, with compassionate and appropriate medical care, the pain of endometriosis can be treated. Pain can be treated with appropriate medical pain management, with diet, acupuncture, and physical therapy. Endometriosis itself can be treated with surgical excision, often with long-lasting relief from pain. Nancy Petersen, who founded the first surgical excision center for endometriosis in the U.S., with David Redwine, MD, has stated that although approximately 75 percent of their patients had previously been told their pain was in their head, most of their patients had biopsy-proven endometriosis, and had pain relief after endometriosis was surgically removed.

Nancy Petersen has stated that “endometriosis may not be fatal, but despair can be.” We need to continue to move towards recognition of endometriosis as the life-altering disease that it is. We need to continue to strive to make effective treatment accessible for all patients with endometriosis. We need to make all care providers understand the severity of the pain that endometriosis can cause, so that the pain itself can be treated appropriately. And we need to recognize the potential for depression and even suicide, and bring these difficult discussions of the emotional consequences of living with endometriosis out into the open.

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23 Comments

  1. Hello My name is Assunta I recently had surgery to remove 3 cysts due to endo. I suffered for years! My doctors never suggested anything other than birth control and pain meds. I developed a tolerance for pain and I lived day to day expecting to feel pain or bleed out through my clothes. In addition to these side affects I am dealing with the hurt of being sexually abused as a child and never having a healthy or normal sex life. A week before my surgery I got married and now I am even more depressed than before. I have been bleeding since the surgery and I feel like my lack of sexual desire and depression is becoming to much to bear. I never reach out in this fashion but I need help.

  2. My daughter had endometriosis for several years. She had three laparoscopic surgeries and was told it was the worst he had ever seen.The second surgeon questioned whether she ever had endometriosis and the third surgeon thought the lower back pain was due to an earliet cracked vertebrae. She was also on a pain patch and oxycodone. She could no longer stand the pain. She wrote “I know this is wrong but I don’t know what else to do”. Later that day April 16, 2010 her husband came home and found her body.

    mi

  3. My pain is so severe for a week now, but I have yet to start a period. This is hell! I missed visiting some family who was in town because I’m in too much pain. For medication, im all out of resources. I keep taking the max dosage allowed which offers little help. I’ve been out of commission for 3 days and I know the worst is yet to come. The doctors are not being very helpful and I hate going to the ER because I’ve been there too many times already. I’m so over this. I don’t have a life anymore.

    1. I’m really sorry to hear that. Have you seen a gynecologist with a lot of experience and surgical expertise in treating endo? Most gynecologists don’t offer very effective treatment. Often women have to travel to access proper care. There is a really great Facebook group with a lot of information about endo and doctors who can provide more effective treatment. You can apply to join it here if you are interested: https://www.facebook.com/groups/418136991574617/

  4. After ending up in ER, I was told I had endometriosis and was referred to a gynecologist who I had to wait four months to see. In the meantime, I got a GP and went on birth control pills, which have helped a little, but not much. The gynecologist finally saw me yesterday for about 15 minutes and basically just ordered another ultrasound. She brushed off most of my questions and concerns, asked me why I thought I felt exhausted (um, endometriosis?), and didn’t address the fact I told her I was having problems with depression (and was crying in her consulting room).
    This meeting with a so-called specialist has made me feel even more hopeless.

    1. Hi Ali,

      I’m really sorry to hear that you were dismissed like that. Were you feeling depressed before the birth control pills? That medication can cause low mood. But also, dealing with trying to find effective treatment for endo can also be depressing especially when your symptoms are brushed off. You may need to find a better gynecologist. I highly recommened you find a gynecologist who is experienced with treating endo. A really great resource for people with endo to learn more about endo, treatment options, and which doctors are doing the most effective surgeries is Nancy’s Nook Facebook group. You can apply to join it here if you are interested: https://www.facebook.com/groups/418136991574617/

  5. My daughter has returned endometriosis post total hysterectomy. She had stage 4 endometriosis by the time the doctors decided to find our why she had been in pain for a decade. Since they had to remove her ovaries due to chocolate cysts she had hormonal therapy started due to being too young to go without. Now, the endometriosis is BACK and she still does not have relief from the pain.
    Pain management doctors tell her they can’t help her! One doctor mentioned the Center of Endometriosis Care in Atlanta, GA but WON’T SEND THE NECESSARY PAPERWORK TO THAT HOSPITAL SO MY DAUGHTER CAN BE HELPED. THE SITUATION IN INHUMANE!!!

    1. HI Patty, I’m sorry to hear that your daughter is suffering so badly. Regarding the CEC in Atlanta, they are definitely one of the best for treating endo and it is definitely worth it to go there. You have a right to your own medical records so I would suggest that your daughter request her records and then you send them to Atlanta yourselves. Contact Heather at the CEC at HEATHER@CENTERFORENDO.COM. She will help you figure out what you need to do if you need help. YOu don’t need her current doctor’s permission or help to seek better care.

  6. Hi, Came across this article while researching Endometriosis. I have been in pain for more than 2 years, drs were unable to diagnose what was causing symptoms and pain. Countless blood tests, stool tests, several ultrasound and after seeing different specialists eventually a colonoscopy was performed. A polyp was found and biopsy revealed it was endometrial tissue. Meanwhile, gynaecologist performed D&C found uterus to be all ok without reading the GI and pathologist report confirming diagnosis of Endometriosis. When report was handed over, he was very surprised and said it is rare to have endo in sigmoid colon. Offered 3 options for treatment and then ordered a MRI and also referred to a general surgeon specializing in laparoscopic surgeon. Started on Lupron with Add back in Jan 2016, gave first injection. In Feb 2016, advised after reviewing MRI report and talking to surgeon a surgery will be performed and to follow up with surgeon, who confirmed surgery is best option in mid March 2016. End of March, gynaecologist advised want to continue with Lupron and will do another MRI in May, 2016. Will not write a note for absence at work. I continue to suffer from pain, severe side effects of Lupron, sleepless nights, headaches, continual bleeding ongoing for 3 weeks. Basically, each month direction for treatment has been changed. Makes me wonder if these doctors are competent enough to treat the disease. Depressing or suicidal thoughts are very easy in this situation as it feels like no one understands the pain and its effect on quality of life, ability to perform at optimal level, anxiety for loss of income due to inability to work and list goes on. During the whole process, I found medical system to be very inadequate and doctors very unsympathetic. A male family Dr even suggested to shut up and tolerate pain as women have pain while having periods.

    1. Sadly your story is not unusual. Many gynecologists are not currently competent to treat endo. SO many aspects of this disease can cause frustration, depression, anxiety and suicidal thoughts.

      Resection of bowel endometriosis is best done by a gynecologist who is extremely experienced at treating endo. Most gyns will not touch that type of endo, leaving it to a general surgeon or colorectal surgeon, but those surgeons don’t have experience with endo. There are more specialized gyn surgeons who do only endo surgeries as their practice, and they will generally be able to operate successfully on bowel endo, and in fact that type of endo has a very low recurrence once it is properly surgically excised.

      In terms of Lupron, you will find a lot of articles on this site with personal stories about women’s experiences on Lupron. Many women do have a lot of significant side effects. The thing about Lupron is that it won’t remove that mass in your colon. It may suppress some of your symptoms while you are taking it, but once you stop, you will be in the same situation as you started with. And Lupron works best on period pain, not on other endo symptoms.

      A really great resource for people with endo to learn more about endo, treatment options, and which doctors are doing the most effective surgeries is Nancy’s Nook Facebook group. You can apply to join it here if you are interested: https://www.facebook.com/groups/418136991574617/

  7. Gret post as this is something I struggle with. I have stage 4 endometriosis. I had my first laparscopy procedure done back in August 2015. My doctor was surprised I could even walk as I was the worst case they had ever seen.

    I remember before getting surgery the pain was the worst I had ever felt. Some nights I spent crying, tossing and turning while hitting the bed. There was no relief, I was so miserable and my quality of life diminished. My fiance hated seeing me like this. And I believe I even told him I wanted to die.

    This disease makes you a prisoner in your own body and it feels like there is no escape. Even with having surgery done the pain is creeping back only 7 months later. I’m begining to feel that despair once more. I still force myself to work full time and thinking about a second job to pay the medical bills.

    Even though I feel miserable and just exhausted I still keep fighting. I still keep trying, my loved ones are what keep me going. But I know if I hadn’t already been through hell and back, I don’t think I could of made it through this. I wouldn’t wish this one my worst enemy and I wish there was a cure.

    1. I’m sorry that you are already feeling the pain coming back. Was your surgery excision, or ablation? Usually with ablation there is a high rate of recurrence within the first year, because it just burns off the surface of the disease, whereas with excision all of the endo is removed at its root.

      I hope you have a good support system to help you. It can be a really difficult disease to deal with.

  8. I am currently at rock bottom through endo. At 35, I have pretty much become isolated and career and boyfriend both seem to be slipping from me. I want to die and cried for hours today, as I feel after over twenty years I am at the end of my tether. The other day I went and cried and begged the doctor for stronger painkillers, and was prescribed (at the NHS bargain of £9 when they’re available over the counter for £1) cocodamol. They haven’t touched the sides. The worst is the vomiting and nausea which is really life screwing, as blood tests, anti nausea pills and all dehydration, pulse tests etc. just come back fine. That feeling of being treated as a psychological mess is more prevalent than anyone wanting to help me stop being sick or the pain. people around me keep telling me about how difficult to look after I am, how draining this is for them. Am I just doomed to a single, childless life where nobody understands and everyone feels the need to constantly lecture me cos I have lost my oomph…currently losing hope rapidly.

    1. Shelley, I am sorry you are feeling so terrible. I know that endo can do that to you, and I have been there myself. It sounds like you are in the UK? Can you find any endometriosis support groups over there? Maybe contact Endometriosis UK and see what they have in terms of support. Finding others who understand how you are feeling can be really helpful. Also talking to a counsellor or therapist who understands chronic illness can be useful. In terms of your endo, there are some centres in the UK who are treating endo more effectively. If you are on Facebook, check out Nancy’s Nook or Endometropolis–they are education/support groups, and the members and admins there will have suggestions on doctors who can give you more effective treatment.

  9. I have suicidal thoughts every day. The pain is unbearable. I have (maybe!) less than a week that is painless a month. My husband doesn’t understand me and we often fight. He thinks I am making it all up, he thinks my bad thoughts lead to bad condition. It’s not that simple. Thank you for this article. It’s good to know there are people that are taking this disease seriously.

    1. Hi Vedrana, You are definitely not alone. Many people living with endometriosis struggle with this. Can you find some form of support to help you? There are many endometriosis support groups on facebook filled with people who will understand what you are going through. Also, please talk to a doctor or counsellor about your feelings as well–if you feel that they may not understand, you can print this article and bring it with you to your appointment. Also, getting better treatment for your endometriosis and better pain management can help with feeling of depression and suicidal thoughts.

  10. Im 21 with horrible endo pains. Its so sad when you count the days to your expected period date, and just cry because you dont want it to come. Ive tried getting pregnant with my husband, but now have fertility issues associated with my endo AND PCOS. Ive had er doctors laugh at me and tell me nothing is wrong, yet there actually is. Its a disease so common, but put aside because they believe WE can control the pain. So unfair. Ive bawled into a pillow for 5 hours straight before, until i passed out from exhaustion, from all the crying wnd screaming. Ive begged for it to stop, ive screamed why me….im having another lap next month. Hoping it helps. I can def say it makes my depression so much worse than it normally is. Im now to the point where i dont want to live anymore. I hope one day itll all go away

  11. I know all too well what your friend is going though. After about ten years of trying one treatment after another with most only providing a small amount of pain relief or not working at all, and in a few instances making my pain worse, and then having to deal with the doctors who couldn’t understand why I wasn’t feeling better, I was at the end of my rope. I had tried every treatment available, including a hysterectomy. My pain had been chronic for about two years. I was missing work on a regular basis and spent all my free time in bed. I had no life.

    I finally got referred to Pain Management by my gynecologist because he decided it was time to try opioid therapy. I was so excited for my appointment, but it ended up being one of the worst days of my life. I met with a NP for about twenty minutes, and during that time, I was treated the worst I have ever been treated by a healthcare professional ever. I was told that my pain was being aggravated by constipation (which I rarely struggled with) and that I needed to accept the fact that I would have to go on disability because she was not going to give me pain medication; all I needed was an antidepressant. (She prescribed me Nortriptyline, which actually has constipation listed as one of the most common side effects).

    On my drive home, I felt so hopeless, like no one cared. I was going to be like this the rest of my life. I couldn’t fight anymore. I was too exhausted. It was the first time in my life I felt like giving up. As I drove across a viaduct with a semi-major highway below me, I thought about just driving off of it.

    I am happy to report that I ended up being put on opioid therapy by my primary care provider. After one year (it’ll be on March 22) I am doing so much better. I am back to work full-time with minimal absences and I have a more positive outlook on life. My pain is well managed and as time has gone on I have been able to slowly lower my dose to about half of what I was started on. And wouldn’t you know it that all the interventions like yoga, relaxation, distraction, and deep breathing actually help when a person isn’t dealing with uncontrolled excruciating pain day after day?

    Thank you for bringing this issue to light as it is something I don’t think people realize, especially the doctors who are supposed to be helping us. I hope your friend gets the relief she needs and I pray that every woman out there suffering on a daily basis finds a doctor who takes her seriously so she, too, can get her life back.

  12. At 30 I was rolling around in pain in Campbelltown hospital 4 days & told that as my x ray was clear, my CT clear & my ultrasound was clear that it was in my head. A went home & rang lifeline at 2am not wanting to live in pain that had no cure or cause. I pushed & went to an old surgeon who did another op & had a Lap, I had severe Endometriosis , I’ve just had my 2nd Lap today but the pain effects my life as a person, mum, teacher , daughter, sister, wife & friend. Misdiagnosis HAS to stop, I was in so much pain I wanted to die! We have to promote knowledge & management so no one else suffers like we have. Every doctor I see thinks I’m a drug addict , but even endone doesn’t touch the pain! I can see the link , I’m disappointed that I let them make me think that the pain was in my head, but glad I fought through. This has affected my mental health significantly.

  13. Penelope, I completely agree with you and I am not surprised by the results of your survey.

    Nichole, I’m sorry you are suffering so much and dealing with infertility on top of it. Yes, Nancy has done so much for endo patients…she is amazing.

  14. Thank you for this article. I constantly wish I could die, and not have to deal with this pain. I have wished this for years, as I have chronic daily pain from endometriosis that has nothing to do with any cycle. I first experienced my pain at 12 and was very lucky to be diagnosed at 14. This means I have been in pain for almost 24 years (I have had some random periods of time with no pain). I can not afford excision surgery, and no other treatments have proven effective (Lupron, birth control pills, nerve blocks, lasering, and a plethora of random medications). I now am trying to get pregnant, and I actually count myself lucky that I knew about this for so long, so I am not quite as stunned about being infertile.

    Again, I thank you for this article, I would love for more people to realize how much this disease destroys lives and the lives of the loved ones who care for someone with endometriosis. I am a member of Nancy’s Facebook group, and am thankful for her lifetime commitment to helping others with this disease. I hope all of this helps others to hang on and hope for some relief.

  15. Thank you for this! I created a short survey recently with 10 questions about Endo and it’s impact on daily life. Over 98% agreed with the question regarding the effect of Endo on their mental well being. The comments are heart breaking. This is a serious issue and it needs far more attention!

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