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Endo Girls
the ongoing saga of bloody pain
My first post in a while. 
30th-Oct-2013 02:16 am

I’ve posted here a couple of times. I have a long history of Dermoid cysts. Have had three surgeries to remove them. My body knows when it’s time to pop out more cysts, as my surgeries had almost all been exactly two years apart, to the day. I’m 30, and am blind. I have a long history of extremely severe depression, PTSD, and suicidal ideation, as well. This was partially due to all my girl issues, though it started when I was a kid, due to a load of family trauma and kept going for years. I am thankfully not suicidal now and haven’t been for four years. I still have the PTSD, though it’s not severe and my depression is manageable.

I’ve always had very heavy periods. Many times, I would leak through at school despite my best efforts and the use of super heavy pads/tampons. I use the cup and Luna pads now and have blood clots, sometimes, which take up most of the cups’ capacity. I have had more ultra sounds than I can count in the last seven years. My cyst issues started with being in so much pain, I thought I was going to pass out, one night after returning from the bathroom. I could do nothing except writhe in pain for a couple of hours. My then-fiancé woke up and asked if I wanted to go to the ER. I couldn’t have walked at that point, even if I’d tried, so I said no because I knew he couldn’t have carried me out of our apartment. He was blind as well. I went in a couple of days later, because the pain wasn’t as bad, but it was still there. They ran tests, and tests, and then some more tests on top of those tests. They found nothing and kept asking if I was sure, I was in pain. I’ve had a history of not being believed about things in my life, so this did not help me feel good at all. Finally, after hours of testing, they got the bright idea to do an ultrasound and discovered I had a Dermoid cyst, which had ruptured. I had other cysts as well. Therefore, they removed them in November of 2006. I had cysts on both ovaries.

Take Care,
30th-Oct-2013 08:45 pm (UTC)
Oh gosh honey, I'm so sorry you have to deal with dermoid cysts as well as bad doctors!

I've had one dermoid cyst in my life (so far), and since then I've tried to read up on them as much as possible, but there's really not much known about them. I know that men can get them as well, from an osteology class I had to take (this man had one in the bone of his forehead!). I hope that you are able to find a better doctor who can help with these.
31st-Oct-2013 05:43 am (UTC)
Thanks, I hope something can be figured out, too. Though for now anyway, I don't have more dermoid cysts, which isn't exactly comforting, given the amount of pain I'm in a lot of the time lately. I can't imagine having a dermoid attached to the bone in your forehead!!! OMG!!! Ouch, ouch, ouch!! It would be nice to get some better doctors too, though I don't know where to even start with that.
Thanks for your comment,
30th-Oct-2013 09:38 pm (UTC)
Something I learned after my 3rd lap to look for endo, and them not finding any for the 2nd time in a row, my PCP decided to take the bull by the horns and put me on hyoscyamine sulfate. Her reasoning was that I was having bowel and bladder spasms, and these were triggering my uterus to spasm as well, leading to the 7 out of 10 pain I was having on a daily basis. I hardly ever have pain anymore now that I'm on it, so for what it's worth, you may want to check into that. I know it isn't always the case for everyone, but if it helps in any way, it just might be worth taking.
31st-Oct-2013 05:26 am (UTC)
Thank you. I'll ask my OBGYN about it, when I see her on the 20th of next month. How do you pronounce the first word of that med? I've looked at it several times, spelling it out with my screen reader, and I can't figure it out. If I can pronounce it, I'll ask her about it. That's very interesting. Would Endo show up on an Ultrasound? I don't think it does, right? Just checking. I'm soooo glad that something worked for you and you're finally pretty much pain free!! The last couple months of really crazy pain has almost made me forget what it's like to not have pain and to not feel absolutely exhausted all the time. This is all compounded by the fact that I'm blind and live alone. I have to spend hours standing waiting at bus stops, hauling my groceries home myself, taking care of my pets myself, making lunches for work by myself, having to do everything myself. Sometimes, I skip a meal during the day/night anymore, cause I can't do everything.
Thank you very much!!
31st-Oct-2013 04:41 pm (UTC)
Phoenetically, it's hi o sigh a mean.
1st-Nov-2013 01:36 am (UTC)
Awesome, thank you very much!!
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