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In Memory Of An Endometriosis Patient

Over the last few months, I have been alarmed to discover that several people have reached my blog by using search strings such as “endometriosis and suicide”.

I have written about this topic previously:

Endometriosis and Suicide: Awareness

National Suicide Prevention Lifeline

I have had several conversations with Endochick about this subject recently. Her blog has also gotten several site visitors who used similar or identical search strings before reaching her blog. We have both been quite alarmed about this. In the case of my blog, I notice such search strings several times a week.

A few days ago, Steph brought a tragic news article to my attention.

I urge you to read this important article, from the Kokomo Perspective.

It is called, “So no one else will suffer”.

In the words of Kristi An Rose’s mother (from the article mentioned above):

“I wanted to help somebody else,” Sherill said. “So no one else has to live that way. I just want everybody to know how much pain she went through, how much she suffered, so this doesn’t happen to anybody else.”

By sharing this article as widely as possible, my hope is that we can honor the memory of Kristi An Rose and prevent this from happening to to anyone else. I encourage you to share her story to increase awareness of the devastation that endometriosis can cause.


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


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Reading: In Memory Of An Endometriosis Patient

10 comments

1 JuliemarshallNo Gravatar { 03.08.10 at 12:11 pm }

Jeanne

This story bought tears to my eyes….what a remarkable and brave young lady Kristi was, such a waste of life and I hope people realise how serious endo is.
Thinking of everyone out there who is suffering.

Julie x

2 JeanneNo Gravatar { 03.08.10 at 3:43 pm }

Julie,

It is a very tragic story. Hopefully by sharing this story other such tragedies can be avoided. I am thinking of everyone out there who is suffering too.

Jeanne
xo

3 Jannie FunsterNo Gravatar { 03.09.10 at 4:40 pm }

Consider it tweeted!
xo
.-= Jannie Funster´s last blog ..Why Subscribe To My Blog? =-.

4 JeanneNo Gravatar { 03.09.10 at 5:15 pm }

Jannie,

Thank you for sending out a message on Twitter about this tragic but important story.

Jeanne
xo

5 EndochickNo Gravatar { 03.09.10 at 6:38 pm }

How tragic. This deeply saddens me, Jeanne. Life is meant to be lived to the fullest, and when we can’t because no one will hear our cries of pain and suffering and help us find healing, tragic things can happen.
.-= Endochick´s last blog ..Infertility Patients’ Rights =-.

6 JeanneNo Gravatar { 03.10.10 at 1:36 am }

Endochick,

There really are no words to describe how tragic this story is. That poor mother worked so diligently to help her daughter. I cannot imagine her losing first her husband and then her daughter a few days later. It is so, so sad.

Jeanne

7 marlysNo Gravatar { 04.02.13 at 8:53 pm }

my 21yr old daughter has endo, and most complications that go with it, and has had multiple treatments. still in pain. i am so scared of this exact senerio. we are Christians, and therefore believe suicide is a sin. but we also believe that God in his great mercy will forgive those, because these troubled souls are in despair, mentally broke down from the physical and mental pain of endo. i shake in fear, and cry from, tragically, seeing first hand the pain these girls go thru, in my own daughter, who could be a carbon copy of kristi….my sweet alyssa was knocked to her knees her second semester of her high school senior year with this disease, and IC. i pray and pray for healing, for her and all sufferers. my heart aches and is breaking for all , and for this girls family , and my tears run ……..

8 JeanneNo Gravatar { 04.03.13 at 3:16 pm }

Welcome marlys!

I am very sorry to hear that your daughter has such severe pain from endometriosis and interstitial cystitis. I’m also sorry to hear that you are scared that she is at risk for suicide. I would like to direct you to another post I wrote that includes suicide prevention resources:

About Suicide Prevention

It is incredibly important for the loved ones and friends of those at risk for suicide to assist them in accessing suicide prevention resources. Generally speaking, parents tend to know their children best. So if you believe your daughter is at risk, she most likely is. I urge you to take a look at the post I just mentioned. The hotline numbers are a means of linking the at-risk person with the professional help needed. Even if your daughter is not willing or able to call a hotline, you could call yourself and see what resources are available to help your daughter. I would urge you to follow your “hunch” and take her risk level seriously in an effort to prevent your daughter from any attempt to take her own life.

If your daughter is not seeing a therapist/counselor, it is definitely worth pursuing this option. Seeking professional help for coping with the pain she is living with could support her and assist her in invaluable ways. I am aware that therapy can be cost-prohibitive. If she does not have health insurance that covers therapy or even if she has no health insurance at all, most regions have a sliding fee scale option available. Typically this is available through larger teaching hospitals. Sometimes other community-based mental health organizations offer low-cost or even free therapy. I recently assisted a loved one in becoming an established patient at a facility that offers sliding fee scale services. This loved one is now receiving free therapy. There are resources out there. Finding them can take some effort but it sounds like your daughter might benefit from a therapist if she doesn’t already have one.

You mentioned that your daughter has both endometriosis and interstitial cystitis. If she hasn’t already done so, I would encourage her to find a doctor who has a special interest in treating these illnesses. Whether that would be a pelvic pain specialist, a urogynecologist, a combination of seeing a urologist and a so-called “endometriosis specialist” (a GYN) depends on what doctors are available in your area. Whether a pain management specialist might help or whether she might find relief from physical therapy, acupuncture, chiropractic services tailored for treating her symptoms, I don’t know (and it’s not my place to say) but there are many different options available that she might find helpful.

In my own personal experience, I have learned that thinking outside the box and doing more than just what my Traditional Western Medicine doctors have suggested has been helpful for me. Again, I’m not a medical professional and can’t say what is appropriate for your daughter. All I can say is that I have had enormous benefits from things such as acupuncture… that no doctor ever recommended to me but that I’ve been getting regularly for about 11 years now. I believe it’s worth trying many modalities to see what helps since everyone is different and because Traditional Western Medicine doctors don’t always expalin the full range of options for treatment.

It is clear that you are very concerned about your daughter. As a support person for her, you may well find yourself in need of support. I urge you to seek out support for yourself as well as for your daughter. As your daughter is relatively young, you may find yourself providing even more support than might be the case if she were older. I would encourage you to take advantage of any resources that will support you too. Whether it’s calling the hotline to talk about your fears for your daughter’s safety or seeking out therapy for yourself, don’t forget to care for yourself as well. Support groups for endometriosis and/or interstitial cystitis (on or offline) may help. Talking with other people going through similar experiences can be really helpful.

From 2001-2008, I facilitated a support group (offline) for endometriosis patients. Several of these women also live with IC. I can’t tell you how helpful it can be to simply talk with others who “get it”. It can be amazingly powerful.

Please take a look through the rest of my blog. You’ll find that I have written many posts about the topics of endometriosis, IC, and suicide. Perhaps you’ll come across something that might be helpful to your daughter or to you. Feel free to stop back and comment… either here or on any post on which you wish to comment.

Developing connections to people who understand can make it easier to cope with the things these illnesses throw to patients and their families.

Best wishes to you and your daughter. I hope she finds relief for her pain (emotional and physical). While these conditions do not have a cure, it is possible for many patients to achieve a state of lessened pain. Hopefully your daughter will get some relief for her pain soon and hopefully she’ll find some coping strategies to get her through the especially difficult times.

Take care!

Jeanne

9 LizNo Gravatar { 04.03.13 at 4:59 pm }

Hi Marlys,

I am so sorry to hear of your daughter’s health problems! Like Alyssa, I’ve got both endo and IC. The combination radically changed my life. I’d been an athlete and a super-energetic person, and it felt like everything I loved most was taken away from me.

Jeanne already suggested this, but I can’t emphasize enough that your daughter needs more than just physical medicine. She NEEDS therapy/counseling. Chronic pain causes depression, and patients need treatment for the emotional/mental systems just as much as the physical. I found a therapist who specialized in patients with chronic pain–in fact she was willing to travel to my house for appointments when I wasn’t feeling well enough to go to her. Your church might also have services that could help your daughter–I’ve found that faith, prayer, and mindful meditation have been extremely helpful to me in the long run. (I’ve been dealing with these conditions for 10 years now.) There are groups both online and in the real world where she can talk to other people like her.

These are tough diseases to live with, and the way we’re treated by much of the world can make it even harder. Your support helps Alyssa. Love, support, and belief by friends and family that the pain is real has gotten me through some of the worst times.

Finally, tell Alyssa from me that she *can* have a life with endo. It’s hard, but if she chooses to she can have an amazing life. She can travel, she can marry, she can work…it’s all possible. It might not look “normal” compared to what healthy people have/do, but with creativity she can make things work. I’m married, I own a home, I work from home full time as a writer for a software company, I blog about traveling with pain. And I’ve done all that with endo and IC. She can too.

All the best to you!
Liz
Liz´s last [type] ..Survey for Travelers with Disabilities

10 endochickNo Gravatar { 04.04.13 at 12:52 pm }

Marlys,

Hello. I can tell through your post how deeply concerned you are for your daughter, and how much you care for her. I encourage you to read the posts Jeanne pointed you to, and consider calling the Suicide Prevention Hotline. If you feel your daughter is considering suicide, please try and get her therapy. As Jeanne discussed, there are ways to get financial assistance and therapy is always confidential. Seek out a women’s clinic since it is connected to her endometriosis; they may be able to advise on a qualified therapist that works with women with chronic health conditions. Take any indications of suicide serious, Marlys. Always. And I wish only the best for you and your daughter. Endometriosis is a rough disease, but it sounds like your daughter has a loving and supportive mother to help her through the journey.

-E
endochick´s last [type] ..Do I Go YouTube?

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