March Is Endometriosis Awareness Month

 

Endometriosis (endo) is a reproductive disease that affects an estimated 176 million girls and women worldwide. The cause is unknown and there is no cure. Symptoms vary from woman to woman, making it a very confusing disease to understand, live with, and treat. Symptoms can include painful periods, heavy periods, irregular periods, pelvic pain not related to the menstrual cycle, painful sex, back pain, bowel and urinary pain/problems, and infertility. The only was to diagnosis endo is to have a laprascopic surgery, a minimally invasive procedure that allows the surgeon to observe the organs inside the pelvis. There are four stages of endo which refer to the location and depth of the implant only, not level of pain. Treatments of endo include: hormonal medications, narcotic pain relieveEndometriosis (endo) is a reproductive disease that affects an estimated 176 million girls and women worldwide. The cause is unknown and there is no cure. Symptoms vary from woman to woman, making it a very confusing disease to understand, live with, and treat. Symptoms can include painful periods, heavy periods, irregular periods, pelvic pain not related to the menstrual cycle, painful sex, back pain, bowel and urinary pain/problems, and infertility. The only was to diagnosis endo is to have a laprascopic surgery, a minimally invasive procedure that allows the surgeon to observe the organs inside the pelvis. There are four stages of endo which refer to the location and depth of the implant only, not level of pain. Treatments of endo include: hormonal medications, narcotic pain relievers, laser removal of the surface endo implant, excision surgery (removal of the entire endo implant), and removal of the reproductive organs. Endo can also lead to other diseases such as adenomyosis, fibromyalgia, IBS, and migraines.

For more information, please visit the Endometriosis Research Center at www.endocenter.org.

Article Written by Staff Writer, Sonja K. Peterson Sonja is a cat mom with endometriosis and fibromyalgia. She also had a hysterectomy for adenomyosis. She blogs about her experiences at The Mud and the Lotus www.mudandlotus.com

©2022butyoudontlooksick.com
  • Brittany

    I am a fellow endo fighter, 12 years strong! I am currently holding an Origami Owl Fundraiser and donating FULL commission to Endometriosis Research Center to help raise awareness and find a cure!!

    Here is a link to the Facebook event (please share, share, share): https://www.facebook.com/events/614177421970588/?ref_dashboard_filter=upcoming

  • Apauthor

    Just an FYI I been living with endometriosis for over 10+ years and what you say is correct however, endometriosis is a benign form of cancer which is why it can not be treated with radiation. Any oncologist will confirm that well those who’ve studied it.

  • Aubry

    Is there any marathon’s or anything in the Orange County area for Endo awareness?

  • Deviousdoll82

    Please come join the Endometriosis Support community on twitter. There are lots of Endo sisters who can help so you don’t have to suffer in pain alone. Follow me on twitter. @deviousdoll82How about a tweet for #Endometriosis Awareness Month is March! over 176 Million Women World Wide Suffer from this disease!

  • It was my senior year in high school when I found out I had endometriosis. In the same year I also found out I have ovarian cysts. Living with it has been a struggle and I almost failed high school because I missed so much. During that time I had surgery to remove a cyst that was the size of an egg. When I woke up I also found out they took out my appendix because it was so eat up with endo spots. Since then the doctor has given me pain pills and now I also take the depo birth control shot. Nothing has helped and it’s getting worse. It’s been hard living with it since no one really understands. Most of my family thinks the only reason why I use the birth control is so I don’t get pregnant. The only relief I’ve found is blogging. It’s nice to know that there are other people out there that understand and care. It really helps when you have someone to talk to. If anyone needs someone to talk to PLEASE contact me on my blog at http://kris-so-fresh.tumblr.com/
    Disclaimer: Some of the things I post on my blog is for mature adults.

  • Jacky

    I was diagnosed with stage 3 endometriosis at the age of 16. I am now almost 23. I had it around my ovaries, my lower abdomen and back, and behind my bowels. I missed so much school and eventually had to be home schooled. I had the laperscopy done when I was 16 and it brought some relief for about a year. I experienced extremely heavy periods lasting about 10-12 days, irregular periods (sometimes I would have them for a whole month), pain was so bad I would feel sick, very difficult to walk because the pain would go to my hips, I have horrible migraines that nothing can relieve, I also had bowel issues while on my cycle, nothing can help my cramps but curling into a ball and crying. I was told that I would not be able to have children and was suggested to take medicine to put me through menopause at the age of 16. I refused bc I wanted a family on day. I tried every birth control to help and nothing has ever helped one bit. If anything it made things like my mood worse and hot flashes worse. I had my first child when I was 20. I had alot of bleeding and cramps during my pregnancy which scared me bc I knew it could be difficult but I had an amazing delivery and healthy baby. We are now trying for number 2 once I speak with my Dr. about it. Afterwords I will be getting everything removed. I don’t think alot of people realize how bad endometriosis can be. Its difficult to work sometimes and try to explain to others what I’m going through and hope they understand. Good luck Ladies! Were so strong to put up with this. 🙂

  • Guest
  • Ruth

    Hi my name is Ruth, and I have Endometriosis I am trying to raise awareness in Los Angeles, I amalso opened I facebook page Endometriosis Los Angeles. Please I tried to go on Adopt a Doctor, so I can spread Awareness everywere, but i dont where to recieve any info, or who I get connected with, I will put up posters, give out pamplets, whatever it takes, I will be the one out there, just please if someone can direct me as to where can i get this information or who do I get connected with.
    Thank you
    Ruth

  • Rebecca

    I was diagnosed with stage 4 Endo at 14. (A year ago.) Being only a sophomore in high school I don’t want to try the certain drugs, like Lupron, that are being offered to me. I already miss school on a regular basis from being in so much pain, it’s not even just around the time of my menstrual cycle. So frustrating…

  • Ashley

    I was diagnosed with Endo 2 years ago and it completly sucks. I have so many fertility problems and so many issues with my period. But friend has Fibro and I am wondering does anyone know if there is a relationship between the two??

  • I have endo and was dx about 3 years ago after a yearly well woman turned into a laparatomy to remove a grapefruit sized cyst on each ovary — lost the right ovary in the process too. Now 3 years later I have switched drs to one who has tons of experience treating women with this disease.

    Right after my surgery (before I switched drs.) my dr put me on Lupron for 6 mos. to increase my chances of having children someday, otherwise she would have encouraged me to conceive immediately. Lupron was hell on earth, putting it kindly. I was a 25 y.o. female in grad school trying to finish a thesis and interning nearly full time. I had the worst of the mood swings, hot flashes, crying spells, weight gain (think menopause); oh, it was terrible, and the best part is no one expects that type of ‘behavior’ from a young woman.

    I am “lucky” in that my endo does not cause me physical pain on a daily basis; however, there is a very strong chance I will not have children. I know my cysts have returned and they are still small, but I look forward to surely for laparoscopies in the future. Thankfully, I have a very supportive husband in this. I have also joined the Endo. Assn which does really good supportive work, literature, and awareness of the disease.

  • Kim, I would highly recommend getting your ovaries removed also. Any endometrial lesions or adenomyosis cysts will continue to grown and bleed after a hysterectomy if you are still ovulating. Thus, you would still have pain. Your pituitary gland that regulates hormones will not know your uterus is gone. That being said, the ovaries being active will keep the problem going until you go through menopause. This can cause the intestines to fuse together, the fascia around your internal organs to harden which results in terrible pain. I have had treatment to soften my abdomenal fascia, which was totally worth every penny I paid, but not covered by insurance. Had I not had my ovaries removed and later had the myo-fascial release, I would still be in horrible pain. Just something to consider. Best of luck with whatever treatment you decide to have.

  • leanne b

    Amen, Shellley re. the luprom. I just finished a six month regiment and honestly though someone was gonna end up dead by my hands! (me or ???)

  • Kim

    I have adenomyosis and I am really suffering with it. Some days are better than others but there is always some level of pain and/or discomfort.
    Most likely I will be getting the uterus removed, as that is the only cure.

    Kim, FL

  • Yes, menopause can relieve symptoms of endometriosis, but it is such a long wait for endo patients who are dx in their teens or early twenties.

    Here’s an article published in 2002 entitled “Women with Endometriosis Have Higher Rates of Some Diseases” at http://www.nichd.nih.gov/news/releases/endometriosis.cfm

    I hope that article helps!

  • Diane Lombardo

    I too got relief from menopause but now I have other pain problems including fibro. Didn’t know it could be caused by endometriosis.

  • I have to add that 30% of women with endometriosis also have lupus. The medical community has not decided which comes first. The IBS is caused by endometrial scar tissue on the colon and intestines. Gifted with both, I can tell you that my first bad lupus flare came when I was receiving endo treatment.
    I had 3 laporoscopic procedures (laser pelviscopies), developed multiple stomach ulcers from the pain meds for my two lovely combo illnesses, walked around with my left ovary attached to my colon for 6 months, got that fixed & then my right ovary dropped down and attached to the back of my uterus. Horrible pain!!! When a patient develops adenomyosis this can cause massive hemmhorraging and death, if not treated immediately. Endometrial scar tissue causes the abdomenal fascia to harden. This does not go away after menopause and is related to most IBS that occurs in former endo patients. Total hysterectomy and oopherectomy helps greatly, but does not completely cure the problem.
    Definitely the presence of an autoimmune disorder can exascerbate endometriosis. I have never seen any stats on endo and fibromyalgia as the medical community has just started discussing fibromyalgia and the research data is limited.
    We can presume that since 30% of women with endometriosis have lupus, that it could be the case with any autoimmune disorder. There is help for the hardened fascia left behind, but it’s not covered by insurance. If anyone is interested in more info on this, contact me.

  • flutewoman

    “Endo can also lead to other diseases such as adenomyosis, fibromyalgia, IBS, and migraines”.

    Has a causal relationship between Endo and Fibro, IBS, etc.. actually been established? I have all of those except adenomyosis and have had Endo symptoms, Fibro symptoms and migraines since I was a child. The IBS came later. I was diagnosed with the Endo first, but I can’t say I had Endo first and then it led to the others. I’ve also heard the theory that maybe Endo and Fibro are all really the same disease. But I’m sure there are people who have Endo, but not Fibro, and vice versa. Does anyone know the statistics of how many people have both?

  • Shelly

    Be careful with Lupron though. It cause me to become psychotic. I was an unusual side effect but not one doctors tell you about.

  • Heather

    I was diagnosed with endo when I was 16. I started my monthly when I was 11 and suffered greatly. My mom had no idea anything was wrong since she had the same issues as well as my grandma. Once diagnosed I was on every type of medication to no avail, I did get pregnant however had many miscarriages one still birth and one live birth! The reason for the live birth… I had the laproscopy and blood tests showed I was not pregnant, however I was 4 days pregnant during surgery. The surgeon nicked my intestines and I died and was revived. 16 weeks after surgery, no period I took a test that was positive. The surgeon said”I did not do or give you anything that would harm the baby.” Well since I had to have a 2nd surgery the same as the first I was opened navel to bikini line and yes there was many meds that could effect the baby! My son has special needs but we think its because his cord was wrapped around his neck 3 times. The best thing that I did was have a partial and that did not stop the endo so I had a full hysto and have been happy since! No more endo for me!!!

  • Ugh. Endo…

    I had been dealing with very painful periods (which started late), pelvic pain and cramping when I didn’t have a period, and when I did it lasted for months…

    Then my appendix burst when I was 14 and while in surgery, my obgyn was called into the OR and I was diagnosed with endo on the spot, also I had a lot of cysts on my ovaries, they didn’t say it then, but I now know it is PCOS. I’ve been on oral contraceptives since then (wow…it’s been 15 years). Now I just found out I have high levels of Antiphospholipid antibodies and I had to go off of the BCPs. Endo is back with a vengeance!

    So I hope I can have a baby someday, but with these three stacked against me, it’s probably unlikely. Anyone else have experience with this? I’m not sure what my options are now.

    Good luck to you all who also deal with endo, and other reproductive diseases. They aren’t fun.

    Miranda Stein from NY

  • westomoon

    There is a cure for endometriosis — menopause. I had read that, and hoped it would be true — and it was!

    For me, it was a neck-and-neck race, whether menopause would come before I had to have surgery. (I won.) It’s one of the little-discussed joys of The Change — all that crud just shrinks & goes away.

  • Kelly

    I had endometriosis and adenomyosis and was diagnosed with fibromyalgia late last year. I had a partial hysterectomy in 2004, then removed the rest in 2009. Knock on wood, haven’t had a problem since!

    Another treatment not mentioned in the article is the use of Lupron injections. I did 6 months of this and my pain level never changed. I was seeing a regular gyn-ob for the Lupron shots and he offered no help at all. I left him and went to an endo specialist, who completed my hysterectomy and it was then that I learned that while the Lupron shrunk the endo, I still had an enormous amount of scar tissue.

    I strongly recommend seeing an endo specialist. I saw 3 different ob-gyns who just didn’t understand endo and didn’t want to understand endo.