Endometriosis Support Group
Endometriosis is a common medical condition where the tissue lining the uterus is found outside of the uterus, typically affecting other organs in the pelvis. The condition can lead to serious health problems, primarily pain and infertility. A major symptom of endometriosis is pain, mostly in the lower abdomen, lower back, and pelvic area.
I really need to reach out today and try to get some support. If any any of my fellow endo sufferers on daily strength have any advice or better a help hotline specifically for women with endo that I can call to speak with a real person this would help me a great deal.
I'm so tired of waking up everyday in pain unable to work, move much, or live my life to the fullest. I rarely have the energy to leave home or visit with loved ones. I don't hardly know anyone who understands how disabling this disease is for me. I have a wonderful boyfriend and supportive family, but I get so tired of trying to explain how I feel to them, because it gets to a point where all they can do is listen. I need real help.
I understand that there is no cure only treatment of symptoms. I've been through hell trying so many different types of birth control and hormones. I don't want to try Lupron. Surgery was unsuccessful. I've hit a brick wall as far as treatment goes and all I can do rig now is try to control my pain. As you all know it's a hard process trying to find a good doctor or pain specialist because so many people don't understand this disease and want to pawn you off to someone else. I've been told it's all in my head or you need to take dancing classes.
I feel like a failure in life because I can't work. I had an amazing breakthrough when I was 17 for a few years after I dropped out of high school and was able to start my own house cleaning business in which I was making 70,000 a year at 17 years old. I believe its because I started smoking marijuana everyday. I don't anymore? Now I can't do anything and I'm so tired of trying to feel Normal. I have to use a cane to walk around my house sometimes and even a wheelchair when I go to the store, because the pain gets so bad from moving. I take pain pills everyday and get massages maybe twice a month. Acupuncture didn't help.I can't exercise and I try my best with eating healthy.
Im sick of feeling like this and I feel like my life isn't worth living anymore if this is how it has to be for the rest of my life. Hardly anybody cares or understands what this feels like. I would love to go to a endometriosis support group but there isn't anything like that here in Albuquerque NM. Can somebody please help me find an endometriosis help line or support line of some kind. I'm only 24 and I'm fed up with the pain.
Thank you so much for reading!!!
Roxy
I've been str
I'm so tired of waking up everyday in pain unable to work, move much, or live my life to the fullest. I rarely have the energy to leave home or visit with loved ones. I don't hardly know anyone who understands how disabling this disease is for me. I have a wonderful boyfriend and supportive family, but I get so tired of trying to explain how I feel to them, because it gets to a point where all they can do is listen. I need real help.
I understand that there is no cure only treatment of symptoms. I've been through hell trying so many different types of birth control and hormones. I don't want to try Lupron. Surgery was unsuccessful. I've hit a brick wall as far as treatment goes and all I can do rig now is try to control my pain. As you all know it's a hard process trying to find a good doctor or pain specialist because so many people don't understand this disease and want to pawn you off to someone else. I've been told it's all in my head or you need to take dancing classes.
I feel like a failure in life because I can't work. I had an amazing breakthrough when I was 17 for a few years after I dropped out of high school and was able to start my own house cleaning business in which I was making 70,000 a year at 17 years old. I believe its because I started smoking marijuana everyday. I don't anymore? Now I can't do anything and I'm so tired of trying to feel Normal. I have to use a cane to walk around my house sometimes and even a wheelchair when I go to the store, because the pain gets so bad from moving. I take pain pills everyday and get massages maybe twice a month. Acupuncture didn't help.I can't exercise and I try my best with eating healthy.
Im sick of feeling like this and I feel like my life isn't worth living anymore if this is how it has to be for the rest of my life. Hardly anybody cares or understands what this feels like. I would love to go to a endometriosis support group but there isn't anything like that here in Albuquerque NM. Can somebody please help me find an endometriosis help line or support line of some kind. I'm only 24 and I'm fed up with the pain.
Thank you so much for reading!!!
Roxy
I've been str
i know how difficult this can all be. it wears you done to the point of shear exhaustion. i'm currently seriously depressed over the outcome of my 4th surgery that i had just 3 weeks ago. ( i think it actually made me worse which is hard to believe) i have not had any relief since i did Lupron back in 2009. it was great while it lasted, but was also the second time i had used it and so i'm maxed out on that. i tried femara prior to this last surgery, but it exhausted me so much that i was practically asleep 24/7( not good with 2 kids that need supervision) and it did not relieve the pain fast enough.
now i'm stuck with pain management, possibly permanently. my husband swears that i'll get better and won't give up, but my mom who used to be my biggest cheerleader and my rock, no longer knows what to do and is at a loss.
so, believe me...i totally get it and understand what you're going through and i'm sorry that you are suffering with this horrific disease too. i wish i knew of a hotline for you to call and i'm sorry that i don't have one. i'm tired too and my only hope is that they are working on releasing a drug i believe that is similar to lupron, but not as harsh and with less side effects that i'm hoping will save me. so find something, anything, as long as it gives you some hope to hang onto and don't let go. BIG hugs and again, i'm sorry that you are in so much pain too. ~jenny
Sending you BIG HUGS and lots of love! YOU are so important and life can get get better. We will be strong for you while you look for help. Don't give up! It's OK to feel that way, but you can find light at the end of this endo tunnel. I believe we all can.
I am going for big surgery that I am very nervous about as well. It's my 6th and know the feeling of ...what is the reason? I can't stand suffering anymore...ect. But each day I am here, I endure and you will too.
Will check back and see how you are. Post and let us know your OK.
Keep on keeping on Endo Sister!
Here are 3 support groups from the ERC website for "southwestern" region.
Southwestern Region:
Denise Childs
Denise@endocenter.org
Discussion group: http://ERC.activeboard.com
Amy VanDerPuy
amyvanderpuy@yahoo.com
Discussion group: http://ERC.activeboard.com
Tausha Leavell
ERC_tausha_leavell@yahoo.com
Discussion group: http://ERC.activeboard.com
Endometriosis & Suicide: a post for awareness
Posted on January 7, 2010 by endochick| 22 Comments
Endometriosis is an invisible chronic illness. Its invisible because its internal; it affects our inner most organs, our ovaries, uterus, fallopian tubes, and pelvic cavity. It can slither around to our bowels and invade our bodies a noxious, vile demon on a painful destructive warpath. And the only outward signs we have to show the world of our illness are our laparoscopic scars and tears. If were lucky, we find a wonderful surgeon who can remove the tissue and place us on a treatment that successfully keeps it at bay, giving us relief for sometimes years at a time. But there is no cure, and we know this. Oh, how we know this.
And too often we may find ourselves curled up on our couches in the middle of the night, crying into our throw pillows, hugging heating pads to our tender stomachs desperately waiting for the pain medicine to work. Too often, some of us bleed ourselves into anemic conditions, requiring even more medication to make us feel normal. And all of this this surviving with an invisible chronic illness that no one else but those who have it, is exhausting.
Because our husbands, our boyfriends, and even our non-endo friends, cannot relate to our pain, we can sometimes feel isolated by it. The pain from endometriosis and the side effects from hormonal medications can wreak havoc on our careers and relationships; and the surgeries, which can sometimes be many and costly, cost us to lose work, lost time from loved ones and daily activities, and possible social stigma. The only ones who truly understand how someone with endometriosis feels is someone else who has endometriosis.
As someone who has endometriosis and has had it for years, I find that I am getting an increased number of searches for endometriosis suicide and endometriosis and suicide very alarming. Never should your pain be so bleak that you feel your only way out is through suicide. If you, or someone you know, is considering suicide (because of endometriosis pain or any other reason), PLEASE seek help! The number to call is: 1-800-SUICIDE
When I was a teenager my cousin committed suicide. She left no letter and no reason. But it wouldnt have matter if she had. The devastation left in the wake of her suicide left holes in the hearts of many family members who still cannot look at her picture without tearing up and its been over ten years.
That is why I am writing this post today to urge anyone searching endometriosis suicide to seek help. Anyone who believes the pain is so intense they can no longer live with it call 1-800-SUICIDE. If youre newly diagnosed with endometriosis and fear you will never have children, do not lose hope! There are many women with endometriosis who are not infertile. But, if you have endometriosis and have struggled with infertility and are losing hope, please check out these resources:
Endometriosis and Suicide: Awareness
by Jeanne
Recently, I posted on the topic of endometriosis and suicide. I did so following an alarming number of visits to my blog by people who had used search strings such as endometriosis and suicide. The post I published in December was a repost of one I had done awhile back about the National Suicide Prevention Hotline. Since I have blogged extensively about endometriosis and since I have also mentioned suicide on my blog, these search strings regarding both endometriosis and suicide were resulting in people reaching my blog.
I discussed my concern with Endochick about the regular visits my blog is getting on the topics of endometriosis and suicide (tied together in the same search string). She indicated that she too is getting regular blog traffic like this. We were both very concerned about this.
Since I published my post (National Suicide Prevention Lifeline), she published her own post on this topic: Endometriosis & Suicide: a post for awareness.
Since these two posts were published, I have received even more blog traffic than before on search strings such as endometriosis and suicide.
I feel compelled to republish this information:
The National Suicide Prevention Lifeline is a 24-hour, toll-free suicide prevention service available to anyone in suicidal crisis. If you need help, please dial 1-800-273-TALK (8255). You will be routed to the closest possible crisis center in your area. With more than 130 crisis centers across the country, our mission is to provide immediate assistance to anyone seeking mental health services. Call for yourself, or someone you care about. Your call is free and confidential.
If you are having suicidal thoughts, it is imperative that you seek professional help. There are trained professionals available such as those at the free hotline above. Please, if you are having suicidal thoughts call the hotline above and speak to the trained staff.
It saddens me that there are so many people suffering so much with this incredibly devastating illness. Having lived with endometriosis for 28 years, I have found many helpful resources that help me cope with my chronic illnesses (endometriosis being only one of them). Help is available. Finding the right practitioners, treatment, and/or support to deal with chronic illnesses such as endometriosis may not always be simple but it can be achieved.
Please if you are feeling suicidal, call the suicide hotline. The trained professionals there will help you, free of charge.
If you are reading this and experiencing suicidal thoughts, know that there are many people who care very much. Please call for help if you are experiencing these thoughts. Help is available.
You HAVE found an endometriosis support group. We are ALL here because we have felt as hopeless as you do at some point in our own journeys. Endometriosis is nothing short of a monster, forever lurking waiting to rear up and turn one's life upside down without warning.
But there is good news. You HAVE a diagnosis. You are not battling some unknown, taking shots in the dark and praying things will change. That's the first big thing. The second is that since diagnosis and surgery, you will NEVER feel as bad physically as you did before. You now know the warning signs, and can act proactively to stop the pain, be it on your own or in conjunction with your doctors and various courses of treatment.
I know how demoralizing it can be to feel like everything is up in the air, dependent on how your body "decides" to behave on any given day, we all do, and we are all here to listen when you need to vent, rant, cry or ask for advice because we all know how important this community is. How few people truly understand this disease and everything that goes along with it, and because you have found us, we will never leave you to do battle alone.
You are stronger than endometriosis, you are now a warrior goddess, whether you feel like one or not, and we will always support you. Hurting yourself will not fix anything, it will merely be another set back and while I completely understand your frustration and anger and rage at having this at all-think of how much worse life could be. We have our sight, our hearing, our limbs and while it may not be a curable disease, it certainly isn't a fatal one either.
I hope this helps, and you can always message me if you need to. I check this page once a day at least.
Be strong-you already are.
I want you to know that you are not alone. I went throuh similar issues just within this last week.
I am 24, and have a 2 year old daughter. I didn't have any real signs or symptoms until almost a year after the birth of our daughter. My doctor believes it is the hormones from the birth that caused my endo to grow and spread out.
Now... I have a two (almost two and a half) year old daughter who loves to run around, jump, and play. I CAN NOT keep up with her. I can't. It isn't that I don't want to, I physically can not do it. I am unable to pick her up, I can not carry her around. I can't even take her to the grocery store with me alone, because it hurts too bad to push her, and I can't hold her hand because the minute she tries to jerk away I have such bad pain flares I see sparks, get dizzy, and pass out (literally).
When I am home, I spend a good portion of my time asleep. I was put on Lupron and Progesterone on top of a few other medications, and one of them caused the endo to spread. It has spread to the point that I can feel the endo lumps when I press around on my abdomen. I am consciously aware that I WILL end up in a wheelchair permanently because of this.
I can't work because of the pain. When I was working I would get sick, vomit, and pass out. I would spike fevers over 105 F when I tried to just work through it. My husband can't work because I can't be alone with her for more than an hour and a half before I am so sick I am incapacitated.
I just had a similar breakdown. I feel like though it would hurt if I died, my daughter is young enough she would one day forget. She is so young she wouldn't have memories of me. My husband would hurt, no doubt about it- but he is 30, and some day he would be able to find a happy- HEALTHY- love who could give him everything he and my daughter need.
I think it is funny that when we put a sick animal down, we call it 'humane' but when we do it to other people it is 'assisted suicide.' I have never understood it.
I JUST started some new medicine for anxiety and depression; one of which is Trazodone, and that is also designed to help with chronic pain. I had my very first therapy session this last Friday, and I have my next appointment this upcoming Friday. I cried. A lot. It felt good though. If you have a local Beautiful Minds agency there, I would really recommend it. It is the agency I am going through, and I really feel like having a third party person to talk to is going to do me a lot of good. I mean- surely I can't tell my two year old daughter that she is my biggest stressor (lol) and that when she asks me to play with her big blue eyes and bouncy blond curls... it makes me want to cut myself because I know I am just not as good of a parent that she deserves.
But, this last week, I have gotten a lot of perspective. I'm both right and wrong. You know what? I may not be able to pick her up and chase her- Hell, I may NEVER be able to pick her up and chase her, and that is something I have to live with. However, I can do ALL kinds of other things with her I may never have thought of before, such as painting on walls, building things, cooking... ect. Even now one of my favorite things to do is lay on the floor and play blocks with her.
I realized that when my little girl is older she is going to look back on her life, and know she was loved. I may not have been able to chase her, but I can do so much more than just that, you know? It will require me to be creative and do a whole lot of activity searching, but at the end of the day she will know that she is loved, and she will know that regardless of whether or not I have to show it to her from a wheelchair, you know?
I had a bad past, ad truly-- I'd have taken a nicer mother in a wheelchair back then any day (lol). And that's really what it comes down to, right? Giving it your all just as soon as you can, and when you can.
This gets me through at night, you know? I feel though, that you have to have something similar. There has to be someone that makes you happy; something that you do, that no one can touch. I urge you to find this, grow on it, and build on it. :D
I agree with some of the above posters too, that perhaps you should consider therapy. I KNOW it has helped me, and will continue to do so.
What works for me, might not work for you, but if you EVER need someone to talk to, ever- no matter the time of day or night, message me. I will always respond. ^_^
the thing that kept me here when i was young and considering death was this idea: if i go, the pain will end, yes. but i will never have any more joy. if i stay, there is the chance for more joy. oh, and what a wonderful life i've had! i am so glad that i stayed.
it looks like you've gotten lots of good specific advice. thanks to the ladies who did the research to turn that up.
a human birth is a rare and beautiful thing in this universe. don't give up, little sister. i'll be including you in my prayersong to the universe.
I hope the women here have helped you come to terms and that all of us together, can't let this disease beat us!! When you go through something, we all do, and we will be there for you! Take that hate and turn it into stubborn power against the healthcare providers that give you the brush off. These people need to be brought out of their "normal routine" and forced to look beyond textbook!! It's up to us to teach them that it's not just all hormone therapy and hysterectomies!
I found a specialist that practices out of the medical center of a state college. ( University of Wisconsin, Madison ) And I'm going to find out if this is a teaching hospital and if it is, I will go above and beyond to make sure there are students involved with my case so that they can see we need more specialists.
I hope that you are feeling better soon! You will be in my thoughts and prayers!!
Stay Gold!