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.

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Isolated 04/03/2017

I have had endometriosis for about 6 years now, I have tried everything and am currently waiting to see a pain management clinic which can take up to a year.... the pain is constant it never goes away and causes nauseous and vomiting that can last for up to 10 days during which I can no longer eat solid food, I spend at least an hour every morning unable to move and in tears while I wait for my medications to work, I take 8 Tylenol with codeine and 2 400mg of Advil and still the pain is so severe I am unable to walk, I am 22 years old, I've never had a job and I was kicked out of high school after trying and failing every year for 4 years, I don't leave my room and I have no friends... I live at home with my mom and siblings however they do not provide any support and are in fact tired and annoyed with me because I am sick and am no longer able to cook for them or clean up after them anymore like I used too .... my doctor is at the end of his line and doesn't know what to do so while I await the pain management for I'm not sure how long I suffer severely and really have no support, I am engaged and my fiancé will leave me in tears a lone because "I'm always sick" my mother tells me that I will end up alone if I don't fix what is wrong with me, that no one will stick around if they have to take care of me.... my fiancé pays for my medications because my mother cannot she would rather spend money on herself, and my fiancé is struggling mentioning trying to work 2 jobs... I am addicted to my medications because I have to take them every day at such a high doses just to stay out of the hospital and I hate this nor can I tell my doctor because I will lose what little strong pain killers I do get from time to time to provide a break from the pain... my doctor tells me I need a hysterectomy yet willnot perform it because he wants me to have a baby first, despite the fact that I don't want to have children and never have... I don't have any hope anymore and I think about suicide everyday the thought getting stronger as the days go by... I don't know what to do.. I don't feel like I can go through this anymore.... I don't want to hurt the people in my life and i don't really know why I'm writing this I just need to get this out to someone... I'm clinging on and I hope I can continue to do so ..... any advice is appreciated and thank you for listening ...

AmyMichelle 04/04/2017

Oh honey...where do you live? I want to help you. I was sick and suffered for 14 years in daily pain. I had a total hysterectomy, bowel resection and bladder resection one week ago today. I am 41 years old now and I'm praying that maybe I can help you in some way.
Maybe you could send me a message and we could speak on the phone? I have been there, I'm telling you. I have been so close to giving up but we can't! This disease has taken so much - we can't let it take your life. Please respond -
Much love -
Amy

Karen4 04/28/2017

I feel your pain. I am 25 and have been suffering for 10 years. My boyfriend is the best support I have but I am also afraid that he will leave me. I am hoping with my new insurance in September they will approve the implant so maybe I won't have as much pain without cycles. I just want to keep the pain subdued long enough to be ready to have a baby and be able to have one because that is my biggest dream. I have issues with jobs because of the pain so I finally found a part time front desk job I can do but it isn't enough money wise. I feel your pain and pray everyday for a cure for all of us.

Cizipkey 05/01/2017

I feel your pain. I have 4th stage Endometriosis,IC and vomiting and a dead intestines. I have a wonderful mother and husband that support me all they can. I do hear the same things though! They say you are always sick. It's hard on everyone, and it just sucks! I'm also on pain killers and those make you feel like an addict. I do try to make sure I take my mobic on time and all the other maintenance meds, plus breath and use a heating pad. Don't let the pills control you. Instead of reaching for them lay down with heat. Then use them when you really need them. I just don't want you to have another problem on top of everything:( I struggled with wanting s child and after years of suffering and going through all the fertility it wasn't worth it. I should have put myself first and focused on stopping the Endo and treating my other conditions. Because now they are so much worse. I want to ask you about the vommiting. I was just in the hospital for 8days because of constant vomiting and it always happens around an Endometriosis flare? Does yours? Any information that has helped you, please let me know. I'm also on a liquid died. I hope you get the help you need. You can always post on here we know how it is. I have also found a pain counsler to talk to. She helps me talk to my family and it has helped. Keep strong and be remembered it's hard for people to understand our pain. But it's your body so you have to take charge! I would demand some other pain options, it's horrible to wait in pain. Plus, pain Drs want to see you are trying other therapy besides meds. Your in my prayers.

Isolated 05/02/2017

Thank you for the kind replies it has definitely brightened up my life to know I'm not a lone and do have support !
Cizipky - I'm so happy to hear that you have support ! And I do know it's hard for everyone so I try my best to understand their side and not ask for too much however my family doesn't support me they are just mad at me for being sick and sick of having to care for me ..... yes my vomiting does start when I have endometriosis flare up as well! The more severe the pain the worse I throw up I usually end up on the floor curled up in a ball and will need help to move when I'm finally done getting sick and then the shakes set in ..... I've heard to use heat before and have tried it however for some reason it makes the pain worse! All my muscle will tense up in my abdomen when I apply heat ... can't even take a shower :( and yes I do the best I can to not let the drugs control me :) I'm so sorry to hear you have had so much difficulty trying to have a baby I hope one day you will be blessed with that gift <3 I have been trying many different therapies for 2 years and none have worked we even went as far as medical cannibas, I've changed my diet tried exercise many birth control pills and a few other none medical therapy but so far my body is too stubborn and I'm recently finding out that I now have more health issues.... still awaiting pain management so I hope that will have better news because my doctor has said he doesn't know what else he can do for me ....

Fairyjill 05/03/2017

I know how you feel and I am so so sorry you are going through this. I seriously wouldn't wish this disease on anyone. It is so lonely. Because they can't see the pain people really don't understand.

Normie 05/04/2017

I want to trow something out to everyone. It may be a stretch but, I am finally able to manage my pain after many years of Endometriosis and ovarian cysts bursting. Some of what both of you are experiencing, with vomiting and the excruciating pain is that I experienced as well. It helped me to keep a journal that I called my food and pain journal. I felt like nobody believed me and the doctors were grasping at straws just handing me muscle relaxers and pain meds. By keeping the journal, I was able to sort out what kind of pain that I was having and what was triggering it. I realized that alot of what i was eating was causing flare ups. I started to eliminate those foods and felt a littler better. I learned what foods caused pain and what foods helped with pain. It was time consuming, but it made me feel better about myself and when I was able to look back I knew that it was real and that i wasn't crazy.

I ended up getting a second opinion and was diagnosed with Interstitial Cystitis and I learned that it was all tied into the pain from Endo and cysts. A few years a later, I was diagnosed with food and environmental allergies. As long as my allergies are under control, my flare ups are under control.

Have any of you been tested for food allergies (just to rule it out)? Before I was tested and had them under control, I had chronic pain, migraines, vomiting during my period which was severely heavy (I would miss work), vertigo, muscle and joint pain, pain in my rectum and lower back and acid reflux. I want to offer support and help any way that I can. Praying for all of you pain to subside.

sabs 06/14/2017

I just joined this group. I'm so sorry to hear that you are suffering, I have endo for last six years .I know how hard it is ..I miss work every month when I get my period because I get excruciating pain in my rectum. For the past five years doctors were not able to diagnose. I was told last year that I have Endo and she put me on Lupron for 6 months.after some research am even concerned of the side effects of Lupron . I just want to say you're not alone ,don't lose hope, praying for your healing .

TAJK 06/20/2017

Dear struggling,
I had uncontrollable nausea for a few years. I also had stage 4 endo and 2 surgeries. The nausea never went away. I went to at least 25 docs about nausea, and several procedures. Then of course horrible gerd and constipation. I gained control over the pain after my second surgery by dr Nezhat. I lost about 25 lbs and was size 00. The nausea was caused by adhesions pushing my bowels closer. I was severely constipated and my food couldn't pass and put upward pressure on my stomach valve causing horrible nausea. If you are constipated, you need to address that, because that was the beginning of fixing the nausea. I took linzess which gave me diarrhea and stomach pain, but much much better than nausea. Then I took lactulose for a few months. Had to eat fiber so my stool could get through my bowels. After a couple months of this and a bland diet my digestive track began to normalize. It improved immediately after the linzess. It's not perfect now, but it's very manageable. Also don't stuff your system with Advil because that will hurt digestion and Vicodin will back you up.
Take disability from work. Then find a doctor who will perform EXCISION SURGERY. Removing your uterus will do nothing for you. Camran nezhat at Stanford performs it and takes insurance. At the least you can get good info from his website.
Endo had me in bed for 3 months. I would wake up crying from pain and my husband would yell at me for "acting like such a baby and faking it." I was so depressed and had constant anxiety attacks. No one believed me. Most people just don't comprehend the pain. My husband does now and is incredibly supportive.
These are all the things I wish someone told me 3 years ago when I was in your shoes

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