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Endometriosis Treatment

First Name • Mon, Aug 31 • No.

This is a long post. I'm just looking for help and sharing my personal experience. I'm also glad to answer questions as I've put a lot of time and energy into studying Endo myself. I have an extreme case along with other health issues and am looking for any alternative treatment recommendations.

I was diagnosed with Endo by laparoscopy in January of 2012. I'm 22, not ready to have children (I keep being told this will help... But... For how long...? And then, ya know, there's a kid!) I have so much pain all throughout my cycle. If I'm lucky I get maybe 2 days a month where I am able to be a fraction as active and productive as I used to be years ago. The pain really got bad about a year before I finally convinced a doctor to preform the surgery. I have had almost no relief. The pain gets so bad that I curl up and can't move. Sometimes I vomit, other times I have panic attacks, sometimes all I can do is take OTC meds like Benadryl just to put me to sleep to try to get through it. I can be standing in a store trying to buy groceries, have a stabbing cramp (on top of the constant slightly lesser pain) and faint. I have to depend a lot on my boyfriend and father. Maintaining a job at this point is hopeless.

I have tried every type of treatment I can get access to. I have had another surgery done by a specialist since my first laparoscopy, I've tried multiple hormone therapies (I DO NOT recommend Lupron. I regret that 6 month treatment to this day.) Others being Nuva Ring, Implanon, several types of estrogen and progesterone pills of different amounts, and I'm currently using the Merina IUD. None have brought me relief from the pain, though the IUD has finally stopped the never-ending "period" I was having. (Literally months of constant bleeding, now I occasionally have some spotting in the form of dark, solid clots for a couple days every 3 weeks or so. My Gynocologic specialist is trying to stop my cycle completely right now without putting me into any kind of menopausal state as that is very dangerous for my current health. (And most anyone's.)

Some alternative treatments I have tried are herbal supplements, diet changes (that I have maintained, like avoiding corn, gluten, dairy & soy), acupuncture/acupressure, chiropracty, massage therapy, physical therapy, and I've picked up some yoga in the last few months too. (I highly recommend the free Yoga Studio app in the iPad/iPhone App Store.) None of these options have brought me significant relief. I should also mention that I'm seeing a Rheumatologist and have tried going to a couple of different pain clinics. (Note: Pain clinics suck. All they want to do is shoot you up with steroids and give you pain killers. At least that's my personal experience.)

So basically that's my life right now; constant doctors appointments (when I can afford them and someone can take me) and being almost bed/couch ridden nearly the rest of the time. So I'm willing to try most anything at this point. (Save total hysterectomy.)

Some treatments I've heard of online but can't find a place of treatment for and/or can't afford are; therapeutic pelvic floor exercises (specialist in this type of medicine are used to dealing with patients [elderly] who need to strengthen their pelvic floor, not relax it), Botox (for the pelvic floor), etc.

If you have any experience in this area, any suggestions, any questions, or even want to share your own woes when dealing with Endo, please comment! I'd also love a conversation about Endo and intimacy! There's not a lot of help out there and I'm really looking for an outlet/further knowledge.

😊

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