Venting My pain's getting worse

[CuriousCat23]

I just really need to vent somewhere because I've been dealing with severe endometriosis for years and the pain has gotten unbearable. One of my medications is for the extreme abdominal pain that makes me fall to the floor and dry heave for hours, but intensifies my hot flashes. The hot flashes have become constant and I haven't been able to actually get a proper sleep in for a week (now I'm just randomly passing out for 1-3 hours per day). I literally can't feel any temperature besides being covered in sweat or goosebumps and feeling like I'm on fire or frozen solid. If I stop taking the medicine though I'll just go back to wallowing on the floor all day wanting to stab myself. I'm sick of waiting months for doctors to get back to me. I already had to jump through multiple hoops for almost a decade now because doctors didn't believe I was asexual and were too afraid to take action on my uterus in fear I would want kids some day and sue them. To make it worse one of my 'friends' just admitted they don't believe in asexuality so who can I even turn to. They're more afraid of losing money than me dying through my condition or suicide (which I've told every doctor about). I was already ghosted by one psychiatrist completely and my current one can't see me more than once a month. My therapist also just happens to conveniently keep forgetting about her appointments she scheduled during our meeting times. I really can't wait months to see an actual surgeon or specialist because this pain keeps making me want to die.
I'm so so so sick of waiting for people to just to their damn job. I just ran out of my antidepressants, too. I don't know how much longer I can do this.

 

[fastFWD]

damn dude that sounds terrible. i hope you find a doctor who can help you more. i'm ace/demi as well so i feel ya. pretty dumb no one's taking you serious :/ i hope things get better for you somehow.

 

[tormented1]

just make ur bed bro

 

[WornOutLife]

I'm really sorry to hear this, pal.
You should talk to a new doctor so as to get different meds. For instance, lorazepam 4mg was ruining my life and now I'm taking zolpidem 10mg/lamotrigine 200mg and I look like a normal human being. (on the outside at least haha)

Anyway, hope your abdominal pain and hot flashes stop somehow.

I wish you the best!

Hugs,

Matt


OFF TOPIC:

Hey @tormented1 or should I say Nicothe13th? I guess you're gonna get banned again.

 

[CuriousCat23]

damn dude that sounds terrible. i hope you find a doctor who can help you more. i'm ace/demi as well so i feel ya. pretty dumb no one's taking you serious :/ i hope things get better for you somehow.

Dang, sucks to see another ace that gets this kinda stuff. I have a specialist for endo now but COVID ruined every doctor's schedule (it's not like I chose 2020 for things to get worse lol). Thanks for the kind words, and I hope you find what you need here, too.

I'm really sorry to hear this, pal.
You should talk to a new doctor so as to get different meds. For instance, lorazepam 4mg was ruining my life and now I'm taking zolpidem 10mg/lamotrigine 200mg and I look like a normal human being. (on the outside at least haha)

Anyway, hope your abdominal pain and hot flashes stop somehow.

Thanks so much for the support! The problem is I also have chronic kidney disease, so any other pain medication would progress that and kill me sooner (I literally can't even take ibuprofen anymore). I am on a sort of "counter-medicine" hormone meant to stop the hot flashes, but it doesn't really work unfortunately. The goal right now is just surgery but it's considered "non-essential" due to the pandemic so I'm just screwed for a while. I'm very glad you found something that works for you though and hope it stays that way :) *hugs*

Honestly I was just stream-of-conscious-ing so I'm glad that people actually listened to me at all here. Thanks again for the solace.

 

[Red]

Aw hon I'm so sorry that you suffer with endo too, I've had it for 20 years and only got diagnosed a few years ago! Mines been raging heavily for this last five years and now they're suspecting adenomyosis
How awful not to be able to take decent painkillers, I'd be effed without mine
Have you had any surgeries??
I had to go private to get mine done properly, are you in U.K?

I just really need to vent somewhere because I've been dealing with severe endometriosis for years and the pain has gotten unbearable. One of my medications is for the extreme abdominal pain that makes me fall to the floor and dry heave for hours, but intensifies my hot flashes. The hot flashes have become constant and I haven't been able to actually get a proper sleep in for a week (now I'm just randomly passing out for 1-3 hours per day). I literally can't feel any temperature besides being covered in sweat or goosebumps and feeling like I'm on fire or frozen solid. If I stop taking the medicine though I'll just go back to wallowing on the floor all day wanting to stab myself. I'm sick of waiting months for doctors to get back to me. I already had to jump through multiple hoops for almost a decade now because doctors didn't believe I was asexual and were too afraid to take action on my uterus in fear I would want kids some day and sue them. To make it worse one of my 'friends' just admitted they don't believe in asexuality so who can I even turn to. They're more afraid of losing money than me dying through my condition or suicide (which I've told every doctor about). I was already ghosted by one psychiatrist completely and my current one can't see me more than once a month. My therapist also just happens to conveniently keep forgetting about her appointments she scheduled during our meeting times. I really can't wait months to see an actual surgeon or specialist because this pain keeps making me want to die.
I'm so so so sick of waiting for people to just to their damn job. I just ran out of my antidepressants, too. I don't know how much longer I can do this.

 

[CuriousCat23]

Aw hon I'm so sorry that you suffer with endo too, I've had it for 20 years and only got diagnosed a few years ago! Mines been raging heavily for this last five years and now they're suspecting adenomyosis
How awful not to be able to take decent painkillers, I'd be effed without mine
Have you had any surgeries??
I had to go private to get mine done properly, are you in U.K?

Holy hell, you've dealt with this longer than I've even been alive. That must be awful, I'm sorry to hear that. I'm in the U.S., and haven't done any surgeries yet, but now I have a specialist in San Francisco (luckily they seem to know about LGBT stuff at least) that I'm scheduled to see later in March. Many doctors are afraid to even see me because they believe in the "wHat iF YoU cHAnGe YoUR MiNd" mentality on having kids/being asexual. I'm only 19, so for the longest time I was told (and still told) I'm "too young" to know anything about that or even have endo. I was constantly asked when I'd get a boyfriend and forced to do pregnancy tests because they didn't believe I wasn't sexually active. I have been pushing for surgeries since I was 13, but I kept getting turned away because they're afraid I'd sue them for "ruining my future" or whatever (my current OBGYN and psychiatrist confirmed this). I'm looking to get a hysterectomy done for sure, and they need to check where I would need ablation because my current OBGYN suspects it could have moved up through my intestines.
Thank you very much for the support, and I hope your conditions get better too. Endo is freaking horrible to put it lightly.

 

[Red]

Yeah man m hella old my baby has

It's hard to find docs that even know what endo is, which is shocking because it's fairly common!!
I really hope that you get the treatment you need, it must be so frustrating to know exactly what you want to do with your own body only to have them veto the decision like that - stay strong and speak your mind! I suspect mine might be on my sciatic nerve but having a hard time convincing them - they really don't listen well at all.

Thank you, it's always a mixed blessing to find another sufferer - glad if the company but sad for it too if that makes sense?

If you ever need to chat my inbox is always open - I hope you don't have to suffer as long as I have!

 

[Cleopatra123]

I just really need to vent somewhere because I've been dealing with severe endometriosis for years and the pain has gotten unbearable. One of my medications is for the extreme abdominal pain that makes me fall to the floor and dry heave for hours, but intensifies my hot flashes. The hot flashes have become constant and I haven't been able to actually get a proper sleep in for a week (now I'm just randomly passing out for 1-3 hours per day). I literally can't feel any temperature besides being covered in sweat or goosebumps and feeling like I'm on fire or frozen solid. If I stop taking the medicine though I'll just go back to wallowing on the floor all day wanting to stab myself. I'm sick of waiting months for doctors to get back to me. I already had to jump through multiple hoops for almost a decade now because doctors didn't believe I was asexual and were too afraid to take action on my uterus in fear I would want kids some day and sue them. To make it worse one of my 'friends' just admitted they don't believe in asexuality so who can I even turn to. They're more afraid of losing money than me dying through my condition or suicide (which I've told every doctor about). I was already ghosted by one psychiatrist completely and my current one can't see me more than once a month. My therapist also just happens to conveniently keep forgetting about her appointments she scheduled during our meeting times. I really can't wait months to see an actual surgeon or specialist because this pain keeps making me want to die.
I'm so so so sick of waiting for people to just to their damn job. I just ran out of my antidepressants, too. I don't know how much longer I can do this.

I'm so sorry. Am a retired nurse, who knows well that most doctors are lacking not only in empathy, but the skills, and desire to go a limit to help their patients. Are you near a city with reputable hospital. Tried going to the ER, you could have complications that might signal some decent medical institution that intervention is a necessity. Have you researched the treatment for endometriosis, have they suggested surgical removal, and would that end the problem, or are there related issues that have happened systemically due to damage of poor treatment. There is no cure or treatment of symptoms to my chronic illness, I am almost bedbound after so many years and complication, I have very little family, and that little cares nothing. It's a sin that people suffering like this must endure alone, and without the means to peace, a final end to empty and lone suffering. Peace, and best wishes

 

[CuriousCat23]

Yeah man m hella old my baby has

It's hard to find docs that even know what endo is, which is shocking because it's fairly common!!
I really hope that you get the treatment you need, it must be so frustrating to know exactly what you want to do with your own body only to have them veto the decision like that - stay strong and speak your mind! I suspect mine might be on my sciatic nerve but having a hard time convincing them - they really don't listen well at all.

Thank you, it's always a mixed blessing to find another sufferer - glad if the company but sad for it too if that makes sense?

If you ever need to chat my inbox is always open - I hope you don't have to suffer as long as I have!

Yeah I get that. It's nice to have people who understand, but at the same time you don't want anyone to be suffering to begin with. Thanks for the offer, and take care!♥

I'm so sorry. Am a retired nurse, who knows well that most doctors are lacking not only in empathy, but the skills, and desire to go a limit to help their patients. Are you near a city with reputable hospital. Tried going to the ER, you could have complications that might signal some decent medical institution that intervention is a necessity. Have you researched the treatment for endometriosis, have they suggested surgical removal, and would that end the problem, or are there related issues that have happened systemically due to damage of poor treatment.

Thank you. Unfortunately I live in the middle of nowhere with small and controversial clinics, but the San Francisco hospital I'll be going to has great reviews and seems like a good bet for now. I did try the ER once, they basically said "this is out of our control, you need a specialist to talk to." I have looked into endometriosis a lot. I initially asked for ablation, but my original OBGYN said a hysterectomy would be better as a permanent solution. The related issues are something that my current specialist is meant to look into once I can actually see her. They're 99.99% sure it's endo, but that .01% always needs to be accounted for, of course. No matter what it turns out to be I at least want a hysterectomy because I'm tired of bleeding for months on end with only a week of break at best.

t's a sin that people suffering like this must endure alone, and without the means to peace, a final end to empty and lone suffering. Peace, and best wishes

I agree with this 100%. I've been saying for a while now that either a bullet or scalpel are my only options to permanently end this pain. It's at least comforting to know there's some plan B out of this. I hope more people understand just how severe chronic pain can be and that there isn't always a solution for illness. Best wishes to you as well. I hope you find peace and I'm very sorry to hear about your pain.

 

[Cleopatra123]

Yeah I get that. It's nice to have people who understand, but at the same time you don't want anyone to be suffering to begin with. Thanks for the offer, and take care!♥


Thank you. Unfortunately I live in the middle of nowhere with small and controversial clinics, but the San Francisco hospital I'll be going to has great reviews and seems like a good bet for now. I did try the ER once, they basically said "this is out of our control, you need a specialist to talk to." I have looked into endometriosis a lot. I initially asked for ablation, but my original OBGYN said a hysterectomy would be better as a permanent solution. The related issues are something that my current specialist is meant to look into once I can actually see her. They're 99.99% sure it's endo, but that .01% always needs to be accounted for, of course. No matter what it turns out to be I at least want a hysterectomy because I'm tired of bleeding for months on end with only a week of break at best.

I agree with this 100%. I've been saying for a while now that either a bullet or scalpel are my only options to permanently end this pain. It's at least comforting to know there's some plan B out of this. I hope more people understand just how severe chronic pain can be and that there isn't always a solution for illness. Best wishes to you as well. I hope you find peace and I'm very sorry to hear about your pain.

I hope SF goes well and you get that 1 percent answer. It's good that you are knowledgeable about the situation, and criminal that you haven't gotten help to now. How dare they withold the surgical answer against your wishes, it seems criminal to me. Have you thought of suing? Best wishes.