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Help severe endo pain need advise
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Help severe endo pain need advise

I have stage 4 endometriosis, I had a large chocolate cyst removed last may and have been stuck in bed lying on my back with my legs crossed and pulled up to my chest ever since. My pain is CONSTANT!  I just can't take it anymore. I've been to the ER 6 times in the last 4 months, each time i go there seems to be more cysts and the drs say they can see spots in the areas that the laproscopic surgery was done- one dr said it looks like lines where they went in and through. Now they have found 3 fibroids in my uterus and one that's a tumor. I don't have insurance ( pre-exsiting conditions make me uninsurable ) I haven't worked in almost a year and I can't get a gyno to see me. My primary dr says I need lupron but would be better off with a hysterectomy- I can't afford either. I've called every gyno in my area and begged for them to help with no luck. I don't know what to do! I can't live like this anymore. I cry from the pain all the time and the pain pills don't help enough. I've applied for SSDI SSI and Medicaid but it's a 120 day investigation and I need help for this asap. Does anyone know of any kind of assistance for women suffering from endometriosis who are low income? I'm only 31 and don't have children and I know I won't be able to :(
I pray everyday that somehow I'll be able to get a hysterectomy even though I'm so sad that I'll never get to experience being a mother. Please, I hope someone out there can lead me to the help I need. Thanks for reading my question. And I wish all the ladies suffering from endo pain the help they need and a pain free life. -B
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Avatar_f_tn
You definately need to get help right away. The longer you wait, the worse it is going to get and the damage may not be repairable. My mother and I both suffer from endo and she waited to have a hysterectomy and the damage became so bad she still suffers everyday 15 years post op. I'm pretty sure that medicade and other programs like that can reimburse you or cover medical bills for 3 months prior to being approved, but definitely start the paper work now and they might be able to make other suggestions. I am praying that you get some help and relief soon.
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Avatar_f_tn
When I filed for Medicaid I asked the case worker if there was any way that I could get into a dr now b/c I urgently need care. She said no. I've filled out applications at medical universitys because I've heard that they are a good place to get help, but I'm still waiting to see if I'm approved. I'm calling every gyno I can within a 75 mile radius today and pray that one can help me.
I'm very sorry to hear about your mom, that's gotta be very hard for her to deal with. Still having severe pain / other symptoms 15 years after a hysterectomey. She's in my thoughts and prayers.
I'm really worried I may have waited too long as well. I hope that's not the case, but with pain and the inabillity to move for 6 months can't be a good sign.
How often is your mother in pain, if you don't mind me asking? Does she suffer from other symptoms as well?
Thank you so much for responding to my post, sometimes it's nice just to hear from somebody who can relate.
Thank you so very much for your prayers! I'll keep you and your mom in mine.
-B
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Avatar_f_tn
Her pain comes and goes, but its generally an everyday occurrence with some days being worse than others. On a good day, she just has small amounts of pain with bowel movements. On bad days, all she can do is lay in bed and cry. Going through menopause seems to be helping though.
As for other symptoms, she is severely depressed and is experiencing mild abdominal "locking" where her organs have become fused due to the scar tissue from endo. Because of this, she has issues with bowel movements sometimes and any sort of gas or bloating is very painful.
I hope none of that scares you too much. Its a frightening disease, but it will get better.
Hopefully when you are able to get treatment it will alleviate your symptoms entirely.
Are you having any luck at the medical universities?
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Avatar_f_tn
I haven't got any calls back from the medical collages yet. I called a bunch of gynos with no luck. My PCP said he would read up on lupron and give me the shots if I can get them thru needymeds. I have an appointment with him this coming week to get the application for the lupron finished up on his part. I hope they'll give it to me because there is no way I can afford it.
That's just awful about your mom, I thought a hysterectomy was the most successful treatment for endo... Is she going thru natural menopause or chemical? This is such a horrible disease. No one should have to experience this.
I can feel the adhesions all over already, I feel like my bladder is being pulled on by something that's attached to the back of my pelvic wall. I'm pretty sure I just had a chocolate cyst rupture a couple days ago it hurts worse everyday I'm going to have to go back to the er again because this one feels worse than the others. I just can't handle the pain and vomiting anymore.
I hope the menapause starts helping your mom more and as quickly as possible.
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Avatar_f_tn
No medication is going to remove the adhesions, right?  My uterus was attached to my bladder and my rectum.  I couldn't reach over my head, bend over or squat down anymore.  Not to mention all the bowel problems that were happening as a result.  The pain wouldn't go away because it couldn't-- my organs were connected where they weren't supposed to be and couldn't function properly.  Check with your local Medicaid office and find out when they have open enrollment.  Or take out a loan to pay for the surgery.  Find out what the surgeon and hospital's payment plans are.  Maybe a family member or your church can help you make the monthly payments for a time until you have healed and are able to start working again.  You can do this.  I know it's hard to think when you are in so much pain, but you have to get this fixed asap and that means surgery.  Praying for you.
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