Suicide and Endometriosis has been a topic heavy on my heart for the past seven months (you can read Suicide & Endometriosis here). Am I suicidal? No. However,last year there were several EndoSisters who committed suicide. And this year a few more have. Too many. But can easily understand their hopelessness: pain; no cure; the potential for multiple surgeries; regrowth; Western medicine, alternative medicine, natural supplements, snake oils, relief, recurrence, and the cycle starts all over again. Not to mention a sense of being completely alone, misunderstood, misdiagnosed, mistreated by physicians, mislabeled as drug-seekers, fakers, and crazies.
I’ve been trying to think of ways that I can help. In a small way. Or a big way. And I’ve fallen short on ideas… But today I’ve learned of a group where Sisters with suicidal thoughts can go for help. An old-fashioned phone-line group. Yes, that’s right. You can email, PM, or call someone if you need to talk. Talk with someone who is in your shoes. Who knows what you’re going through…because they’re going through it, too. Understand that you are not alone, and understand that people want to listen. And help.
Shoulders for Sisters was created in June 2015 by two EndoSisters, Amanda and Brandi, after hearing about three confirmed suicides of EndoSisters within one week. THREE…IN ONE WEEK. A fourth Sister also passed away that week, but the details of her death are unknown. Amanda and Brandi, like many of us, felt like something needed to be done. So they created Shoulders for Sisters, a Facebook group where EndoSisters in need of help can turn to. It is currently run by four Admins and is a closed group on Facebook, and will remain closed for the comfort and security of it’s members. If you would like to join, either because you need someone to talk to, or you would like to help, please click here.
I had a few questions for the founders of the group, and was given permission to share them here with you:
Question: Do you have Endometriosis? If so, could you tell us a little bit about your experience, diagnosis, struggles, and victories? It may help us connect with you.
Amanda: I have had symptoms of endometriosis since my first period in August 2000. My mother didn’t believe in doctors and my ex husband didn’t like paying for them. I was finally diagnosed in September 2012. I had stage one. Two years and many doctors later, I had another lap with the best excision specialist in Minnesota, Dr. Eric Heegaard. I had stage four. He found endo and adhesions everywhere. It was nice to know that, despite what I had been told for years, it wasn’t “just cramps”, I wasn’t a “drug seeker”. It didn’t matter that I didn’t ” look sick” so “it couldn’t be that bad”. I had a diagnosis and treatment plan. Every treatment so far has failed miserably to control the pain. But, as much as I want to at times, I cannot give up. We have to be the voices for our fallen Sisters.
Brandi: Yes. I was young when I started my period. Probably around ten or so. My periods were heavy and so painful that they kept me from school many, many times. I was told this was just “bad cramps” and that it was completely “normal”. Pretty much that periods are supposed to be painful. That it is part of our burden as women.
At the age of 17 I was diagnosed with polycystic ovary syndrome (PCOS), and given a new drospirenone-containing birth control pill. They said it would help with the periods being so painful and heavy. It only made me very ill. (Morning sickness like ill, so I stopped taking it and went back on one of the other popular pills at the time.)
Two years and three OB-GYNs later, I am having even worse periods, the pain is worse than ever. I can hardly get out of bed at times. It was absolutely horrible.
After trying several different hormonal treatments and unsuccessful pain management, I ended up on a drug called Lupron. I could write you a novel on this horrible chemotherapy drug. They gave it to me just assuming I had endometriosis. When endo can only be confirmed through surgery. The side effects were horrible. I would get a monthly shot of this poison and then be sick for 3 weeks. Once I’d start feeling better, it was time for another dose. I had a total of 13 months of it, not realizing that you’re not supposed to have more than 6 months of it in a LIFETIME. You read that right. LIFETIME. It did
nothing to help my pain. In fact, it did more damage to me than I believe the endo has.
One year, and two suicide attempts later, I met the doctor who would save my life. I will keep him anonymous at this time, but he did my first laparoscopy and lo and behold, there was endometriosis. It was only stage 1, and there wasn’t much, but there it was. Growing inside me almost like a cancer. He also placed the Mirena IUD in during that procedure.
(Mind you, he is a local doctor. Where I’m from, there aren’t a lot of great doctors. I went to Wheeling Hospital and didn’t even get to see a physician but a physician’s assistant. I went to UPMC Magee Women’s Hospital and was told by the doctor that if something were to go wrong during my surgery, it could “Ruin his reputation.”) All of that before I met my current doctor.
For the first six-eight months I had almost no pain at all. I thought it was a miracle. My periods stopped completely.
Four years and one oophorectomy later, I am suffering terribly again.
I am scheduled for another laparoscopy on July 6, 2015, to have any and all adhesions removed, the Mirena IUD removed, any endometriosis excised and hopefully only the cyst on my remaining ovary removed. I desperately want to keep this ovary. I’m only 30, I don’t have kids and I can’t afford to have eggs frozen. I also consider myself too young for HRT. They told me that if I end up having this ovary removed, I will be on HRT for at least 15 years. Which makes endo grow more, among other problems.
It’s very frustrating. We all say we need a cure. I think that firstly, we need an effective treatment; Not just pain medications.
Question: Please explain a little bit about the group and what you wish to accomplish.
Amanda: We just want to be supportive, that good friend that can be called anytime, day or night, and help you get through this. A lot of Sisters don’t have support. We want to provide that.
Brandi: The group was a response to recent endo-related suicides. Girls who felt they had no other choice but to take their own lives. It’s horrible to think of. It also needs to stop. If we can be there for each other, we should be. We’re all in this together even though our cases are all different.
Personally, I would like the group to be for those sisters who are depressed, having anxiety, and suicidal thoughts and feelings. I know what that feels like. It’s a lonely hopelessness. A feeling that even those on the Suicide Hotline don’t understand because they don’t get the physical pain component like we sisters do. Basically, the aim is to be supportive to one another and be there for each other in times of need and crisis.
Question: Are any of your admins trained in suicide prevention? If some (or all) are not, will you be encouraging taking classes?
Amanda: I am not, but I have studied the subject on my own. I think experience with the same issues can help more than any class.
Brandi: I’m not. I would definitely be interested though. I’ve gone through this personally and ended up in a psych unit. So I know the feeling really well. I still have bad days to. We Admins aren’t immune to that and I’m pretty sure we know it. I would absolutely be open to taking classes. Even if they’re online.
Question: Do only Admins take the phone calls, or can any interested members? If any member can, please explain the process of how we can go about joining your “phone tree.”
Amanda: As of right now, we admins are taking the calls, but we intend to set up a “Buddy System” of sorts, where each person would check in daily with their Buddy, and refer them to us if they can’t handle it. We also require everyone to provide their address and phone numbers, privately, to the admins, in case a Wellness Check needs to be done.
Brandi: As of right now, any member who has posted their info on the pinned post will be able to take calls and messages. We’re planning to implement some sort of buddy system in the near future.
Question: Is there any other way that we can help?
Amanda: Raise awareness. This disease itself isn’t deadly, but the lack of understanding and support is. After hearing for so long, even from medical professionals, that you’re crazy, or just want drugs, you begin to doubt yourself. You are not weak, you are not a burden. You are strong and you are loved!
Brandi: Awareness of our group and for sisters not to be afraid to admit when they need help.
I want to thank everyone involved with the creation and ongoing support of Shoulder for Sisters for their efforts, time, heartache, and empathy. There have been far to many deaths due to Endometriosis. And something had to be done. This is a small step toward a greater future for EndoSisters. Just knowing that there is someone out there who cares, someone out there who understands, and someone out there to hold your hand…that can truly make the difference between life and death.
You are not alone. We are not alone. And I am so grateful for the broad and supportive community of EndoSisters. And for this group striving to save lives and hearts.
Please feel free to share their Facebook group, or this blog. Knowing this service exists is the first step toward getting help. Knowing where to turn. And if we don’t share the link, how will EndoSisters know it’s here? Share, share, share. Please.