Added: 1 year ago
From: penguinvsminja
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  • I'm having very similar symptoms to you. I just met with my doctor today and we decided to do a diagnostic laparoscopy. Have you had this done? I'm a little bit nervous for it, but I'm anxious to know exactly how bad my endo is and find out if they can treat it. Also, how do you stay so positive?! I try to be a positive person but being in pain all the time really wears me down.

  • Thank you so much for posting this! it makes me feel better that others understand that this is a disease and does affect us.

  • I'm glad you posted this. Endo kind of runs in the family, and I've had such intense pain during menstruation since I started at 9, up my back, down my legs, on rare occasions into my calf muscles. Over the last few years, it's gotten worse and I've been getting terrible back/lower spine pain that occurs out of no where, but usually around my period. Usually a stabbing pain in my lower spine that lasts about 15 minutes, and it sends a throbbing pain around my abdomen :( Do you ever get this?

  • @outforbl00d My back pain hasn't been as bad as my leg pain in the last year or so. My leg pain seems to be getting worse and worse every month. I do know, however, a lot of my pain is coming from IC and PFD as well, so its become very hard for me to find a combined treatment to try and treat pain :( blahhhhh haha

  • hi thanks for video, have you found that  the pill helps? or the de pro injection? i have similar to you and had surgery it went away for a bit but now his worse than ever and all my doctor has said is stay on the pill or injection, take pain killers before sex, and go on a mild antidepressant to help with the pain and anxiety,

    they must be more i can do? i want to try alternative things but it's so hard when your in pain and down a lot because of it. i really can't except it yet.

  • @kataliceb sometimes i do feel the birth control i am on holds the symptoms at bay to a certain degree, but not all the time, and not during my period. birth control does not stop the disease from existing, it just changes your hormones enough to try and stop the tissue from reacting to those hormones as drastically. i can't really take pain pills, they make me so nauseas.

  • you rock Sarah. and it sucks that we have to share such a painful disease

  • @valeriasennas aw thank you haha :) and yes it sucks :( but we wont let it hold us down!!!

  • They said out of 50 I am 49% thats the worst. It don't hurt during sex, sometimes very rarely after! You need to get the surgery I did to clean you out sometimes.

  • @MsDoors33 I've had 2 surgeries, and with my last one we found two other pain conditions contributing to my overall pain, and they are significant contributors. unfortunately having the surgery has not gotten me out of pain, even though it was with one of the best endo specialists in the country. please remember every case is different.

  • @penguinvsminja I'm starting to see that. Some woman don't get a period some women get a period every 35 days. My case is just weird. Good new tho, I have no children and I have not ovulated since my surgery I did this month because I have been charting WISH ME LUCK!

  • I had a 13cm cyst on my right ovary. I had multiple on my left. Since day 1 of my 1st Menstrual Period I had pain. When I had this cyst I went into surgery and the Dr said I have endo. I totally confused. I get a period every month. My tubes were clear. So I don't get it at all. Since the surgery I have been fine. Yes I am tired alot, just started tracking my ovulation today. Gonna try for a baby 1 more time. I just turned 36 in Oct.

  • the fact that the pain cannot be controlled is scary. i'm 21 and i have this.

  • I'm glad you posted this video. I have a lot of the same symptoms as you. I've also had days where the pain caused me to be a little light headed and dizzy. Has this happened to you? I was diagnosed in 2005 with a moderate case of endometriosis, but I believe it may have escalated to a more severe case over the last 6 years. I try everything from asprin to hot baths, but not many remedies work. Do you have any suggestions for at home pain relief?

  • @EdIsMe03 the thigns i do at home, since i've found i can't take narcotics without getting extremely sick is a heating pad, especially an adhesive one, such as thermacare, hot showers or baths, meditation techniques, breathing techniques. just ways to calm the body down, calm your heart rate, so your blood flow is not as intense. more blood flow can cause things to swell and hurt even more. relaxation techniques can help sometimes.

  • I'm greatful to have found your video,I'm in a pain right now and I have all the symptoms as you. I have no insurance and wish I could stop all this.

  • @chasitysweet i'm so sorry you are in pain :( hang in there!!!!

    

  • I experience the exact same symptoms, I had surgery in October 2010 and the endo was found to be much more extensive than originally thought so I encourage all of you who are on the fence about having the surgery, to do so. Yes the surgery does hurt a lot. It took me between 6-10 weeks to recover but I also had some complications with my surgery so it's probably less for a totally successful operation. I had a lot of damage to one of my kidneys which was very painful and still causes some pain.

  • @daydreambeliever28 what are you going to do now? did your doctor mention a hysterectomy?

  • @daydreambeliever28 i wish you all the luck in the world with your journey with this horrible disease. let me know if there is ever anything you need or even if you just need to talk :)

  • @daydreambeliever28 the surgery really hurts? Oh no! I am very likely to have to have surgery. I thought it was a day thing in and out in one day. Is that not right? I have to have a laporoscopy sometime in the next few months. I was hoping to work towards a half marthon. I am worried to sign up for it incase my treatment is going to be extensive. Its horrible so life consuming. Did you have a scan first to discover it or how did it go? Sorry heaps of questions! How you doing now?

  • I'm in Georgia. I went to the Doctor a couple of weeks ago and he said that without laparoscopy he can't say for certain but he thinks endo is the most likely diagnosis. (which I already knew). He put me on lo loestrin, which I started a week and a half ago. I think its a little early to know if its helping. He said to try it for at least 3 months before I decide if it helps or not. I hope it does but I don't know how I'm going to pay for it!

  • sorry about the double post, this keeps acting odd!

  • I have never heard anyone else say their endo causes pain to radiate to their legs and back, thats exactly what happens to me!!!! I found your videos just now and I'm watching them all because they are very inspiring and make me feel not alone!!!

  • @brandyhasendo awwww thank you for watching!! i hope they are informative/helpful!!!

  • @penguinvsminja it is very helpful. I'm having surgery on the 19th of April. Any tips on recovery or what to expect before/after? That'd be a good video topic!

  • @brandyhasendo that is a great idea. i have surgery coming up on april 21st, so that is definitely a video i can do!!!

  • @penguinvsminja that would be great if you could do a video like that! like i said i have my surgery on the 19th of april, not too sure what to expect of the process!

  • @brandyhasendo you are def not alone for me most of the time during that time of month it radiates my legs and my whole back to the point im literally crying from the pain. good luck on the fight.

  • I haven't heard anyone say they have paint hat shoes into their legs and into their lower back, thats exactly how mine works!!!! your videos are very inspiring, its nice to know im not alone

  • Very encouraging words. Thanks for posting. I've been doing research about my symptoms and everything leads me to Endo and I believe that I have it. Dr's just want to prescribe birth control, but i've had enough bad side effects from that, so im thru with bc. I literally cant walk right now, my left leg is numb, heavy and pelvic hurts super bad. I dont know what to do :(

  • @TinkTink19 i'm sorry you are having so much pain :( definitely keep talking to your doctor about your symptoms, and if he doesn't support you, i would suggest finding another doctor until you find one that will work with you to reach a solution, rather than just giving you more meds you know aren't going to work. i wish you the best in the journey ahead!!! let me know if there is anything i can do to help!

  • Thanks for posting this video. It was very encouraging to me. I have not been officially been diagnosed but told by 2 different Doctor's that I "probably" have it. I'm planning to see another Doctor soon and hoping she will be able to help me more.

  • @Fieldoeden good luck!!! i hope you can find answers soon :) what state are you in?

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