How can people live like this????!!!!!! - Endometriosis UK

Endometriosis UK

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How can people live like this????!!!!!!

brennaaileen profile image
6 Replies

I was reading articles all night about this disease and learned a lot about myself. I realized all my symptoms started after a miscarrage when i was 18, one of the worst miscarrages i ever had. I am 28 now and still no relief. I went through 7 miscarrages, emergency rooms for pain so bad that they would put me on morphine. Was put on depo for a year and some relief until it wore off after 6 weeks then would have to wait for the next one, mean while taking pain killers non stop. The pain is so bad at times that it paralyzes you severely. It's hard to keep a job with a condition like this. Endometriosis is a real disability. I lived in NY for six years and was getting treatment there and had to move to Niveville Florida, my home town. The health care system is completely different here. No help from any doctor I have seen. No pain killers, nothing. Even with health ins for a little bit didn't even help. Over 80,000 dollars in debt and still no help. The health system should try to make things a little easier for people like me. No money and poor health conditions. What scares me the most is some of the articles i read, said that endometriosis can kill. If you are seeking medical attention for your condition, be aware of possibilities of strokes with severe cases. I was shocked when reading about this. Cerebellar endometriosis do have some side affects that can cause stroke. Or so I've read. Since I can't see a doctor, I won't know for sure. Here's hoping someone will find a cure. One thing is for sure, not everyone has the same symptoms. I have been trying to find someone who has the same problems I do. Symptoms are; no periods lasting up to 6 months, really bad back pain, weakness of your whole body, low body temperature( lowest temp of mine was 95.8), tremors, headaches, naussa, bowel issues, either going non stop or can't go at all(varying time of the month), depression, pain in legs, joint pain, vomiting, severe mood swings, cold sweats, pain so bad that you think your going to die, feeling like your in labor, fainting. If anyone has these same issues as me, please contact me through email. brennapelegrina@gmail.com

It seems that life can feel a little easier when you know your not alone.

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brennaaileen
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6 Replies
Tinkerjack1912 profile image
Tinkerjack1912

My endometriosis symptoms started after. Miscarriage too back in 2002, I've had three laps from then and still have endo.

_Tamsin_ profile image
_Tamsin_

Hi I'm so sorry to hear that you have struggled so much with endometriosis, and your healthcare system is doing nothing to help you. I really hope you get some answers and relief from your pain soon. A lot if your symptoms match mine. The interesting thing is, my symptoms started shortly after a suspected miscarriage (I wasn't 100% sure if I was pregnant). I hadn't considered that before. I also have back pain, nausea, vomitting (I vomit literally at least every 2 weeks), and I have passed out from the pain before.

LeyaC profile image
LeyaC

I just want to reassure you all that you can't die from Endo nor can you gave a stroke, the worst thing that can happen is endometrial cancer. I do want you to know that you're not alone and that we all have varying symptoms but mostly they are very similar. I wish the system was better for you. I am in England so obviously I'm on the NHS but that is a downfall because there aren't very good doctors on the NHS, if you want good doctors you have to go private. Not many can afford that so nit many of us get the right help.

I do hope it gets better for you.

Leya x

gemmap profile image
gemmap

My symptoms are very similar to yours I found been on the contraceptive pill helped me and the endo diet defiantly helps when I get a flare up. I stick to it about 90%of the time. Tremors are something I've been told are not part of it but I'm convinced it is I get them too wishing you well x

classiebird profile image
classiebird

Are u on Facebook. Join Nancy nooks endometriosis group. She is a nurse and since u are in America she can give u d names of excision specialists near u.

Excision surgery is the only way to take away the pain of endo and give u ur live back.

There is hope.

Oh also be careful what u read on the Internet. Most of it is bull shit and dere are some that prey on desperate individuals like us in chronic pain promising and cure or others who are scare mongering

XoRubyXo profile image
XoRubyXo

I'm not sure if this is what I have, but I did have a stroke in 2014, and a cause hasn't been found. They pretty much brushed it off, and haven't continued looking even though I was 33 when I had it. Now, I'm having symptoms endometriosis, I didn't even know what that was until I googled the symptoms. I have doctors who don't even take me seriously, even though I had a stroke. I'm really scared that this is what it could be. I had an mri though, would it show up in a scan?

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