Healthy Living

Tuesday, February 9, 2010

Endometriosis – the pain, the frustration, and the mystery

It's a night I will always remember. I was out with some friends when suddenly, I had unbearable pelvic pain – it was so horrible, I was doubled over. I thought I was just having extreme cramps. I soon learned I had severe endometriosis. Nearly 20 years and five surgeries later, I still suffer from this relentless and debilitating disease.

The pain can be excruciating – so much so that this spring when I was driving my car, I was gripping the steering wheel as hard as I could, screaming, and fighting back the tears and fear. It felt like something was bursting inside of me. Through the years, it has hurt so bad that I’ve had to stay home from work because I couldn’t get out of bed. Surgeries have revealed adhesions on my bladder, colon, and ovaries, and implants on a ligament near some nerve fibers, which explains the horrendous pain.

The interesting thing is, anytime I mention endometriosis, like I did over here on my blog, I hear from so many other women who also have it, as well as from those who have never heard of it. It seems either way, not many people talk about it. But since discussing it may help someone, let's talk about it now.

What is endometriosis?
It's a condition where tissue that usually grows inside the uterus grows on the outside instead, most commonly on the ovaries, behind the uterus, on the bowels or bladder.

Basically, when a woman with endometriosis has her period, the tissue outside the uterus still acts like it normally would during a menstrual cycle: It thickens, breaks down and bleeds each month. Since it has no way to exit the body, the trapped blood may lead to cysts, scar tissue, and adhesions that can bind organs together.

About 2 to 10 percent of women in their reproductive years have endometriosis.

[Photo Credit: American College of Obstetricians and Gynecologists]

Symptoms
The main symptom of endometriosis is pelvic pain. You may have the pain during sex, bowel movements or when you urinate, or just before or during your menstrual cycle.

The odd thing is the amount of discomfort you have does not always reflect the severity of your condition. Some women who hurt just a little may have a severe case. Others who have a lot of pain may have a mild case. And many women with endometriosis don't have any symptoms at all. They may first find out that they have the condition if they can't get pregnant. About one-third of infertile women have endometriosis.

Cause

This is one of the most frustrating things about the disease. The cause is unknown.

Treatment
Pain medications and hormones can often help, but severe cases may need surgery to burn off the implants and scar tissue. Surgery can relieve the pain, but as I've learned, it can come back again and again. A hysterectomy is an option if your pain is extreme and does not go away after treating it.

My last surgery was just last month. I chose to have another laparoscopy like the four I’d had in the past. So, now what? I guess all I can do is just hope this time, the endometriosis is gone for good.

If you want more information about endometriosis, there are a lot of links to great resources here on Medline Plus.

Sources: National Institute of Child Health and Human Development, American College of Obstetricians and Gynecologists, Mayo Clinic

Pain, pain, go away...

[Photo Credit: stock.xchng]
Syndication:

From the Community…

Comments 1-10 of 35
  • Nancy Roberts's Avatar
    Posted by Nancy Roberts Thu Sep 10, 2009 9:34pm PDT

    Thank you for this. I've had terrible endometriosis all my life, the symptoms of which are somewhat allayed by omitted dairy products, but it still sneaks up on me. Gripping the steering wheel -- no kidding. Thanks for the article!

    Report Abuse
  • Mary Ann's Avatar
    Posted by Mary Ann Sun Sep 13, 2009 8:11pm PDT

    I suffered with it for years, had about 6 laproscopies, good news is once you go through menopause it's usually done!

    Report Abuse
  • Michelle's Avatar
    Posted by Michelle Mon Sep 14, 2009 9:19am PDT

    I also know all about gripping the steering wheel and praying for the pain to go away. I had a laparascopy back in April and have since been put on Lupron therapy and it's helped so far. The pain from endo for me was so excruciating that someone could have knocked me out and I would have been happy about it! I just pray that the pain does not EVER come back.

    Report Abuse
  • AmberFW's Avatar
    Posted by AmberFW Mon Sep 14, 2009 9:25am PDT

    After having two really horrible laproscopies for endometrious pain(allergic reactions to the anesestic), my NEW doctor suggested a newer treatment with a drug called lupron. Basically, it puts your body onto false menopause for about 6 months. Once the treatment was complete, I felt awesome. I am still trying to concieve my first birth child since the treatment, we have adopted two other wonderful kids. Wish me luck, adopting is a pain, worth it, but painful.

    Report Abuse
  • FatFighterTV's Avatar
    Posted by FatFighterTV Mon Sep 14, 2009 9:51am PDT

    Nancy - Interesting about the dairy products. I've never heard that.

    Mary Ann - It's one reason to welcome menopause, right?

    Michelle and Amber - I have been on Lupron twice and did not do well with it. Glad it helped you both.

    Report Abuse
  • Mrs. Carol B's Avatar
    Posted by Mrs. Carol B Tue Sep 15, 2009 5:05am PDT

    Though the cause is unknown my best guess as a registered nurse is that it is caused by birth contol. Like with other things, birth control causes changes in a woman's body that the medical community doesn't know about yet. It would be interesting to know the statistics of women who've used birth control vs those who haven't who present with symptoms of endo.

    Report Abuse
  • JessicaK's Avatar
    Posted by JessicaK Tue Sep 15, 2009 11:14am PDT

    My sister has endo and was told that that the only way for her to get rid of the pain was to remove her ovaries. She has opted not to since she is barely in her early 20s. She has had multiple surgeries, but nothing really helps. She's been on various medication to help treat it, including taking birth control shots and hormone treatments, and nothing helps.

    Hopefully, she'll be able to have kids on her own when her and her husband decides its time.

    Report Abuse
  • Samantha's Avatar
    Posted by Samantha Tue Sep 15, 2009 12:06pm PDT

    Thank you for posting this. I have been suffering with endo for 15 years. I have had three laps and now I found a specialist who recommended a Laparoscopic Presacral Neurectomy, he will go in and cut the nerves to my uterus so hopefully no more pain.

    Report Abuse
  • Corella's Avatar
    Posted by Corella Tue Sep 15, 2009 4:08pm PDT

    Im so glad to hear of other women who have dealt with this. I first found out i had Endo when i was 16...since then ive had 6 surgeries (in 5 years) ive been on medications that have stopped me from producing eggs for over 8 months (600$ a month for that medication) 3 different types of birth control, and countless other remedies...The worst pain i ever felt in my entire 21 years on this earth happened because of endometriosis...45 minutes of sheer agony, not being able to walk, or move, or tallk, or basically anything...i have never experienced anything more painful then that day (which happened a little over a year ago) Since my last surgery, i have not had any issues with endo, my periods last literally for one day a month...but the consequences are dreadful...I was just married last year and there is a 75% chance that we can never have children...im only 21 and i have to deal with that possibility. There is a slight chance that it can happen and we will always keep our hopes up....but endo has permanently damaged my uterus...

    Report Abuse
  • FatFighterTV's Avatar
    Posted by FatFighterTV Tue Sep 15, 2009 7:09pm PDT

    Thanks, everyone, thanks for sharing your experiences with endo. I'm sorry for the suffering you have endured.

    Report Abuse
Comments 1-10 of 35

leave your comment

You must sign in to post a comment

Sign In for personalized information

New User? Sign Up

Health Byte

Get healthy foods for your family that won’t take a bite out of your budget.  Healthy living costs less at Walmart.