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I'm a nearly thirty-something writer living in Los Angeles. Married with no children. Subject to change if/when my ovaries cooperate. 
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Endometriosis Affects Quality of Life

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Two weeks ago, I had two surgical procedures: a laparoscopy and a hysteroscopy. I haven't had my post-op appointment with my doctor yet. That's on Friday. However, I do know some details about what she found while she was peering at my insides. 

I know she found endometriosis. 

Endometriosis is one of those female diseases that mystifies doctors, and is not talked about much in public. It is a painful and debilitating disorder that occurs when tissue that lines the inside of the uterus begins to grow in places outside of the uterus. For a full definition of endometriosis and its symptoms, please go here, or a simple Google search will turn up thousands of articles. 

Randomly, you will hear endometriosis tossed into the conversation when a woman is having difficulty conceiving. As in, "Ooooh, she has endometriosis! She can't get pregnant!" First of all, that isn't true. While they may need fertility help, many women with endometriosis get pregnant. Secondly, while endometriosis can affect fertility, it can also affect a lot more. It has the ability to completely alter your life, your self-esteem, your marriage, everything. 

Why isn't endometriosis talked about earlier in a woman's life? Especially given the fact that more and more women are waiting until their early to mid-30's to have babies. Also given the fact that endometriosis can become worse as women age. Why aren't doctors discussing this with high school and college aged young women?

I suffered from bad cramps during my adolescent years. I can distinctly recall my mom needing to pick me up from school a few times. I sat curled in a ball in the backseat of our minivan writhing in pain. My periods were often heavy, and sometimes came twice in a 28 day cycle. Throughout the years, I relayed these symptoms to numerous doctors. Each time I was told it was a hormonal imbalance, and I should go on birth control. I was also told to physically numb myself with Advil up to two days prior to my period.

Thanks, but no thanks.

I was on and off birth control for years. I would go off of one pill because it made me feel emotionally unstable (a.k.a. psycho bitch). I would go off another pill because it made me bloated, and I was convinced it gave me UTIs. I never really found a birth control pill that fit. 

Some doctors believe that birth control can actually help endometriosis and its symptoms. I wouldn't know, because none of my doctors ever talked to me about it. However, had I been told that maybe I could have this disease called endometriosis, and that maybe birth control pills could help the condition, I might have faithfully taken the pill whether or not it made me crazy, bald, or a hundred pounds overweight. 

I had never researched endometriosis until I began googling my menstrual symptoms a couple of years ago. As I entered my late 20's (I'm 29 now), my periods became almost unbearable. I had heavy bleeding, pain, and weakness to the point of needing to lay in bed for fear of passing out. That is definitely not normal. It was then that I began to wonder if something was seriously wrong. 

My general doctor finally noticed that I had been coming to her for like seven years with period issues. Instead of trying to force another round of birth control on me, she decided to order an ultrasound and then scared me into thinking I had cancer. 

Lovely. 

The best part of that story is that she is an internist, and had no clue what she was talking about. Yet, she successfully frightened the shit out of me and everyone that cares about me. Shortly after that, I was sent to a gynecologic oncologist who performed a D & C. That helped very little, but confirmed no cancer. Strangely, I still hadn't been told I could have endometriosis. Finally, I found an OBGYN who looked at my medical history, and suggested a laparoscopy.

Here I am today. 

My main point in sharing all of the gory details is to bring home the fact that (a) you are your own best health advocate. If you don't get the answers you need, hound your doctor or find another one, and (b) endometriosis affects a lot of females from the moment you start your period until menopause.

Doctor's OfficeEvery young woman should know about this disease. She should know about it well before her child-bearing years. In

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granolagirl 5 pts

Hi there. So sorry you are going through this. I myself had my surgery in December only after convincing my OBGYN that I was not going to wait 6 more months (after trying for a year to conceive) to see if there was "something" wrong with me. Turns out there was, had my surgery and am now on a journey to try and fix my body from the inside out and try and conceive naturally (as much as we can anyway). It is quite the roller coaster but the good things is they found out what was wrong with you, and you are headed in the right direction. Right!? Feel free to check out my experiences www.myinnergranola.com ( http://www.myinnergranola.com ). Good luck.

lauramich 5 pts

... isn't it? I have endo. I don't have the classic symptoms, but I'm infertile—as in, little hope of conceiving even with aggressive medical treatment (which my husband and I ruled out before we even started TTC). I would trade places in a heartbeat with an endo patient who suffers excruciating cycles but is able to conceive and deliver healthy babies.

snarkymomma 5 pts

Really sorry you had to go through that. Your story sounds similar to mine. I dealt with the misery of it up until I was around 22. I would miss at least a day of school every month because of it - it had me so ill that I would run out of class and throw up. That "Advil 2 day in advance" thing? HA HA. It used to make me vomit.

When I was around 23-24 my gynecologist suggested I undergo a laparscopy because she thought it sounded a lot like endometriosis. And it was. I had never heard of it before she asked me if I'd been evaluated for it. Two kids later it's sort of in remission at the moment, but I expect it to come back raging at any time (just like it did between kids).

It really does help to have a name for the monster, though.

Tiffany writes at Snarky Momma ( http://www.snarkymomma.com ) and Country Mouse City Mouse ( http://www.countrymouse-citymouse.com ).

epower76 5 pts

I'm glad I happened across this article (via bedsider.org)... I've never heard of this, and yet I've been worked over by both GI tract doctors and an OBGYN. Why was this never mentioned?? For seven years, I've lived with heavy periods and cramps, sometimes bleeding almost every day of the month, and the same time this started, I developed chronic diarrhea... yet neither the gastro-intero doctor or OBGYN wanted to hear about the other condition! I"ve had a colonoscopy, endoscopy, abdominal ultrasound and vaginal ultrasound. They couldn't come to any conclusion other than IBS for my bowels, and knew enough from the abdominal ultrasound that something wasn't right with my uterus lining, so they sent me to the gyno. The lining was so thick, he couldn't come to any conclusions and just said maybe it's fibroids that are too small to see, and gave me a prescrip for low-dose hormones that didn't really help.

I'm pissed!

judloved 5 pts

Let us remember that the abuse of medicines in excess is dangerous so recommend eating properly and not take - hydrocodone, lortab and percocet - prescription medications without a prescription....http://bit.ly/MKw0v

thelessthandomesticgoddess 5 pts

Thank you for commenting and sharing your story. I'm sorry you've had to go through all of this! Have your doctors been able to come up with any other solutions besides hysterectomy? Are you seeing a specialist now? Since my health problems started, I've communicated with so many women with similar stories of pain and suffering. It breaks my heart. Yet, it's also empowering to know that we aren't alone and we are very strong people in spite of all these hardships.

Feel free to contact me via Twitter or email. My email is carlysdreams at hotmail dot com.

Carly Lee (@carlysdreams ( http://www.twitter.com/carlysdreams )) writes a blog called The Less than Domestic Goddess ( http://www.thelessthandomesticgoddess.com ). 

sexydiabetic 2 5 pts

I feel your pain and all of it. I have had 2 blood transfusions because of my super bleeding. I have to be on hormones or I will turn into a faucet and bleed out. With the first transfusion I was had bleed out so much blood my ex boyfriend.

I finally got diagnosed with Adenomyosis. Which is similar to Endometriosis. I had been going to the same silly OBGYN that couldn't just tell me my case was to complicated for her talents. I would have appreciated it. I was put on every type of birth control and injected with all kinds of hormones. to no avail. Things would work for a month or 2 then I would start bleeding super heavy. i was protecting myself with maxipads and super tampons at the same time. I was scared to go in public in fear of an bleeding mishap or fainting.

what you said about being your own advocate is so true. I am diabetic too and that has something to do with my condition too. In either case I had to make the choice to look for better treatment elsewhere to find a solution. I was tired of being a guinea pig for new drugs that didn't work. I have a wonderful doctor now. But even still she wants me to have a hysterectomy like all the others.

I have been refusing a hysterectomy for the past 3 years. I have read about horror stories with the surgery before and afterwards. I really question why for women most of the solutions to womens health it to cut out the problem? Are men ever told the first line of defense is to cut out organs or tissue? I can go on and on about this.

I am in the LA area too. Would love to talk to you.

Cassandra 5 pts

Everything you've said about endometriosis can be said about fibroids (with the exception of the actual definition). Heavy bleeding, pain, possible fertility problems, the fact that people don't talk about it and that doctors are not always knowledgable. BC pills are not a panacea. Thank you for raising awareness of these types of problems!

thelessthandomesticgoddess 5 pts

Endometriosis is such a mystery to both patients and doctors. From my understanding, some women get pregnant easily, others don't. Some women have extreme pain, and some don't. Diagnosis is truly on a case-by-case basis. Due to your symptoms, I think you should keep prodding your doctors for more information. If your periods are barely tolerable and you are missing work/school due to them, that bears further scrutiny. Have you had a pelvic ultrasound before? That could be a first step.

I really hope you get the care you need! Thank you for your comment. :)

Carly Lee (@carlysdreams ( http://www.twitter.com/carlysdreams )) writes a blog called The Less than Domestic Goddess ( http://www.thelessthandomesticgoddess.com ). 

deew27 5 pts

I've struggled with horribly painful periods since I was a teenager. I have PCOS,which was diagnosed about 8 years ago,but just recently had yet another surgery due to ovarian pain and my Doc found endometriosis as well. I had one ovary removed, which had an endometriosis cyst that had formed inside of it (causing the pain). I have two beautiful kids now, and am ready to just have it all taken out the next time the pain starts up.

www.deeperrin.com ( http://www.deeperrin.com ) - personal ramblings

www.recipecorner.net - family recipes and quick-fix meals

MarfMom 5 pts

Are there other symptoms? Do women with endometriosis ever get pregnant without a problem? I've asked my gynecologists about endometriosis off and on since I started going at 19. I've always been brushed off, even though I'd miss school and work due to the pain of cramping and my periods would last 7-9 days. I never tolerated birth control, though I've found a type of NSAID that at least allows me to function and shortens the period by a few days. Curious if endometriosis is something I should continue to ask about, or if I can rule it out since I have 2 children.

jeannie6006 5 pts

I suffered horribly for years. Eventually I had a hysterectomy due to pain and bleeding profusely for 3 days every 12 to 14 days. They found an ovarian cyst caused by endometriosis had grown between the layers of my uterus ... and it was the size of a large cantelope. No wonder I had so much pain. Been pain free for several years and can now wear white pants! :-)

FabGrandma 5 pts

I had it for years, but never knew it had a name. I had extremely heavy periods, painful cramping every month. It only got worse as I got older. My husband frequently told me I moaned in my sleep. But, because I was so used to the pain, it was like I was immune to it, so I really couldn't describe it as pain.

I finally went to my gynecologist with a list of symptoms a mile long that include cramps, migraine headaches, dry skin, painful intercourse, and on and on. She decided a hysterectomy was right for me.

She told me it was going to be a laproscopic surgery, but when she got in she found the scarring of endometriosis. She said the scar tissue had adhered my to my diaphram which in turn made it difficult for me to breathe when I walked very far.

After the surgery, I felt like such a new woman! I no longer hurt, I no longer had difficultly breathing. I felt young again. I thanked her for giving me my life back at 46.

I only wish a doctor had found the endometriosis when I was younger so that I could have been spared so much pain for so many years.

Read the latest at http://fabgrandma.com/

Real Life with Kids 5 pts

With many of the symptoms you describe, I was referred to a specialist in Houston, Texas (I lived there) to help figure out what was wrong with me. Endometriosis was the answer. After a laparoscopy they determined that both of my tubes were scarred shut. What followed was 3 months of menopause induced by a hormone shot designed to help rid me of the blockages. Once over that hell - they told me that if I wanted to have children I'd better "get 'er done". A 2nd opinion confirmed that recommendation. And so it was that 6 days before my first wedding anniversary my baby was born.
More recently - in my 40s now - I had to have an ovary removed because of significant endometriosis. You can read about that in this post - if you'd like. http://www.reallifewithkids.com/?p=1319
I hope that things get better for you and that your post helps raise awareness of endometriosis.
I think it is great that you shared this.
Cate

You can read Cate's stuff over at http://reallifewithkids.com Twitter: http://twitter.com/reallifewkids

Janers0217 5 pts

Your history, both personal and the encounters with the doctors, sound almost exactly like what I've been through. I had the uterine cancer scare last year after the ultrasound, which resulted in a D&C & hysteroscopy. (I've had "irregular" periods since I was 11--always too heavy and too long and never regulating on their own.) No endometriosis diagnosis, though.

I don't think that doctors realize just how unbearable constant bleeding or horrible cramping can be. It seems like they think it's some form of hysteria. Quite infuriating.

Melissa Ford 5 pts

Absolutely -- I wish we spoke more about various reproductive disorders and their symptoms. Empower women to be self-advocates since we're the only ones who know what is happening inside our bodies.

Melissa writes Stirrup Queens ( http://stirrup-queens.com ) and Lost and Found ( http://lostandfoundandconnectionsabound.blogspot.c... ). Her novel about blogging is Life from Scratch ( http://www.life-from-scratch.com/ ).

the-menstruator 5 pts

Some women get it and aren't bothered at all. I have it outside of my reproductive system. I had to have surgery to have my ovary unattached to my instestine thanks to the lovely magic of endometriosis.
The not having babies part doesn't even register compared to the amount of pain involved. To the fact that you can practically have no life... no friends... lose your job because of the massive pain you are in. At the end of the day, who cares about breeding when it feels like a creature is trying to scratch it's way out of you anyway?
Meanwhile, you know if this disease afflicted males there would be a cure at a drive thru pharmacy.

thelessthandomesticgoddess 5 pts

I totally agree. Endometriosis is quite common, but isn't talked about. Women with endometriosis are often bounced from doctor to doctor and are usually given birth control pills for their symptoms. It would be great if treatment and information were provided earlier in hopes of improving quality of life. Thank you for your comment!

Carly Lee (@carlysdreams ( http://www.twitter.com/carlysdreams )) writes a blog called The Less than Domestic Goddess ( http://www.thelessthandomesticgoddess.com ). 

LucindaA 5 pts

It is so sad what you have gone through. It isn't like Endometriosis is a rare and uncommon condition. I know several women with it. I'm sorry for what you went through and hope you find some relief soon.