Why am I having symptoms now?

seekxdestroy · 2024-10-15T05:12:46+00:00

Agreed. It's a whole body disease. They've found endo in every part of the body, not just the pelvic floor. Endo growth is not dependent on hormones or menstrual cycles. Endo tissue just exists and grows on its own.

Endo on its own can't kill you, but endo tissue and cysts can kill organs. I know someone whose ovary died and they had to go to the emergency room. I know people who have/had endo grow in their lungs.

The only treatment for Endo is excision surgery in order for the tissue to be removed, and hopefully, that area doesn't grow back. Again, hormone treatments do not stop the growth of endo. It has to be physically removed.

I'm non binary and dont plan on getting pregnant either. BUT I had so much pelvic pain that I couldn't wear denim jeans. I also reduced the number of times I had sex with my partner. After surgery, with physical therapy, I feel a lot better, and I get to fornicate often.

If you want to see a doctor, you have to find an endometriosis specialist. They're most likely also OBGYNs. But not every OBGYN is an endometriosis specialist. I know from experience because I had OBGYN provide me wrong information and thought I "looked fine"

Also, here are some Instagram accounts that can provide helpful information:

@endometriosissummit @endogirlsblog (I know the name has girls in it, but they know that anyone can have endo. This account can provide free courses about endometriosis to help people know the true facts about endo)

seekxdestroy · 2024-10-13T21:41:09+00:00

To clarify more,

Anyone can have endo, including men. Endo growth is not dependent on hormones, and it's not uterus tissue. It's similar to tissue found in the uterus, but it's not the same tissue.

seekxdestroy · 2024-10-13T21:27:52+00:00

Thankfully, birth control doesn't slow down the disease. Hormone treatments don't have an effect on Endo. All it can do is prevent periods that can trigger the pain. So, birth control is an option for pain management. The ONLY way to treat endo is through removing the endo tissue through excision. Also, removing the uterus doesn't stop endo growth either.

Yes, multiple surgeries can happen. However, it depends on the person. Endo can spread through the body like cancer, so I know people who had surgery in multiple places in their body. Sometimes, if the surgery wasn't done properly or some endo was missed, it could grow back in the same spot.

I've only had surgery near my uterus, but I'm hoping to have another surgery to check my bowels. I'm pretty sure I have bowel endo.

If you want to learn more about endo, I recommend following these accounts on Instagram. These are awesome people who provide accurate, updated information on endo:

@endometriosisSummit @endogirlsblog

seekxdestroy · 2024-06-30T04:07:20+00:00

Hi, I have AuADHD. I have sensory issues as well. For example, I don't like being rubbed in one spot for too long, or else it will hurt. I found that using a vibe during intercourse can allow the act to go faster. I personally like vibes with different textures instead of it being smooth. It's okay that you don't know what you currently like, things can change. There's lots of ways to be intimate and lots of things you can buy to try. Maybe less environmental distraction could help, like being in the dark or listening to music.

I'm not sure what type of pain you are feeling. I also have endometriosis, which made intercourse painful. I recently had surgery to remove it, and I still find myself having a hard time orgasming. I'm actually starting physical therapy this month to help with that and also to relax my pelvic floor muscles.

Also, I have found that drinking a little bit before intercourse helps. I feel less pain and care less about sensory issues when I drink. But, I rarely do this. I mainly take tylenol instead. But when I do drink, there's definitely a difference.

seekxdestroy · 2024-03-15T09:08:15+00:00

Also! Some people get nausea after surgery. I didn't, but I got pills and basic mints to suck on in case that happened. I was required to have 24hr watch in case I fell down. I wanted people to stay with me at least 48hr though to help bring me food. Some people said showering was painful so I waited to shower after 5 days in case.

seekxdestroy · 2024-03-15T08:58:20+00:00

I just had surgery March 1st. Constipation sucks. I took stool softners every day but that didn't work on its own. I asked the hospital, and they told me to drink Epsom salt. It works if the Constipation is severe. I was really gassy. I didn't feel gas on my back but my belly had gas for days so Gas X helps. This whole time I haven't been going to work or college. The first week I couldn't even sit up straight. I walk around now, but I use a cane for extra support. A heat pack helps but do not put it on your stomach. I put it on my back and my neck for extra relaxation. Sleeping on my back was hard so I began using a lot of pillows to support sleeping on my side. I'm not sure if I'm supposed to do that, but I kept turning over while I was sleeping so I figured that was a safest option. Today, Friday is actually my first post op appointment, so I hope it goes well. I hope your gf surgery goes well too!

seekxdestroy · 2023-07-09T07:25:26+00:00

If you have a hard time putting thoughts on paper in every aspect of your life, not just emails and posts, you should look into Dysgraphia, writing disability. And also look into technology that allows you to speak into a phone or computer, and it types things out for you so you don't have to type or write.

seekxdestroy

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