Endometriosis, Part 1: What to Do When Your Womb Hates You

We’ve talked before about what effect the monthly visit from the painters can have on training and sport. As all of the tampon commercials note, wombs can be a bit of a damper on an active lifestyle. And that’s just if you have a normal work-a-day cycle. But what happens when your uterus is actually pathological?

uterusatan
WAKE UP, SHEEPLE!!!!!

I have a condition called endometriosis, and there’s a pretty good chance that one of every seven women who’s reading this right now has it, too. It’s a common chronic health issue. In this three-part series, I’ll talk about what endometriosis is, why getting a diagnosis can be a complete pain in the arse, what the treatment options are, and ways you can manage yours while still continuing to train and lead a relatively normal life.

This first installment looks at the background stuff. Let’s go:

What Endometriosis Is

Endometriosis is what happens when the lining of your uterus (the endometrium) decides it needs a little more Lebensraum. Bits of the lining get outside the womb and begin attaching themselves to other structures in the pelvis, such as your bowel, bladder, and ovaries.

These bits form cysts in some women, adhesions in others, and, for a lucky few, both at once. (Yours truly is an adhesions woman. I imagine my insides look like Shelob’s lair.)

adhesionsprecious
Oh no, Mr Frodo!

What’s even more fun is that these bits of wayward womb lining remain active. Every month, they swell up and bleed, just like the lining in ye olde mothership. Only there is nowhere for the bleeding to go. It’s believed that this retained blood contains endometrial cells that then re-seed more tissue in new places. And so the condition worsens over time.

Some people think this sounds like cancer. The one thing endometriosis isn’t is cancer. It’s almost never fatal, unless it goes untreated for so long that it moves up out of the pelvic cavity and goes for your lungs. In which case, you get the added joy of coughing up blood during your period.

Endometriosis in the lungs, however, is incredibly rare. The more typical form can still be a genuine disability if not treated.

And “treatment” is the best you will get– there is no cure for endometriosis, unless you consider waiting for menopause a cure. You could also try constantly being pregnant, as pregnancy often causes endometrial implants to die back, but that presents its own issues.

What Endometriosis Looks Like

Common symptoms of the condition include:

  • Crushing pain during periods and/or at ovulation
  • Pain during sex
  • Irregular menstrual cycles
  • Heavy, clot-filled bleeding that lasts more than two or three days
  • Gastrointestinal problems that seem to wax and wane with your menstrual cycle, including rectal bleeding
  • Fatigue (often due to iron-deficiency anaemia caused by all the bleeding) and low mood
  • Bloating of the abdomen (usually caused by something attached to your bowel)
  • Difficulty getting pregnant
  • Skin problems– usually acne, sometimes eczema
  • Did I mention the crushing pain? More of that, especially if the tissue has latched on to your sacral nerves.

The bugger is that the symptoms vary from woman to woman. Some women will have no pain, but find they can’t get pregnant. Others will get knocked up in a heartbeat, and yet experience debilitating pain once their periods resume after childbirth.

It all depends on where the endometrial deposits pitch camp in your gut, and what kind they are.

What it Does to You

The main recognised complication of endometriosis is infertility. Rogue tissue gums up your ovaries and fallopian tubes and makes it impossible for sperm to meet egg, or for a fertilised egg to find its way to the uterus to safely implant. This doesn’t happen to every woman who has the condition, though.

IMG_1890
Exhibit A

 

Beyond that, the main problems are the heightened risk of anaemia and the fact that blacking out from pain or bleeding through your clothes on a regular basis makes getting shit done a bit of a problem, particularly if you enjoy throwing heavy weights about. Or being seen in public. Or having sex. Or any number of other things.

What Causes Endometriosis?

¯\_(ツ)_/¯

Nobody knows. There are a few vague theories, but nothing definite. Is it menstrual backwash? Cells that have been in your pelvis since you were in utero, or even a birth defect of some kind? An inflammatory condition? An auto-immune disorder? A clogged root chakra? Science is only moderately more informed than you or I are.

And, as with many other women’s conditions, there isn’t a lot of research money flowing (ha) towards the study of this problem. In the US, the NIH reports that they spent about $11 million funding studies related to endometriosis last year. This sounds like a lot until you consider that the House of Representatives spends more than $2 million just on breakfast pastries annually.

Causes aside, one of the biggest challenges in dealing with endometriosis is getting proof that you even have it.

Getting Diagnosed Takes 7.5 Years on Average

I think that’s worth putting in big text, don’t you? Obtaining a diagnosis takes this long because:

  • So many endometriosis symptoms look like something else (my GP was convinced I had IBS)
  • Endometriosis symptoms can vary from month to month
  • Endometriosis doesn’t show up in blood tests, on ultrasounds, MRIs, or CAT scans (although sometimes cysts caused by it do)
  • Not enough women talk to doctors about their periods, and not enough doctors ask
  • Everyone assumes periods are meant to be painful and messy, and there’s no good definition of “normal”
  • Many women take hormonal birth control, which can mask symptoms of the condition

There’s also the fact that the only current way to confirm endometriosis is through exploratory surgery — usually a laparoscopy that involves sticking a camera through a hole in your navel.

Any kind of surgery that involves general anaesthetic is a big deal, and doctors aren’t terribly keen to pack you straight off to the operating theatre if there might be another cause behind what you’re experiencing. So, until some research scientist working with a grant equal to 2% of the congressional bagel budget finds an indicator that can be picked up with a blood test or a new imaging technique, this is how we live.

That said, if everything you’re reading here so far has set off alarm bells for you about yourself or someone you care about, don’t worry. It doesn’t HAVE to take this long to get the right diagnosis. It only took me eight months.

lrg_stop_suffering
Bitches be misplacin’ organs

Hacking the Diagnosis Process

If you suspect that you have endometriosis, you can save yourself some bother by doing your homework before heading to the GP. I know you’re busy bleeding and being exhausted, but this will help.

Know your cycles: I’m a firm believer that every woman should track her cycles, as changes often provide an early warning for a multitude of health issues, not just endometriosis. Don’t just track when your period arrives, either– make notes about how much bleeding and pain you have.

There are a ton of apps that can help you do this. Be prepared to tell your GP whether your periods have become steadily longer, shorter, more painful or heavier over the last few months. After years of a 27-day cycle, mine became completely erratic with increasing amounts of pain during ovulation. And the output basically started looking like this:

giphy

Track other symptoms and look for correlations: Abdominal bloating, rectal bleeding, and other GI tract issues were what took me to the GP. Once I could show that these symptoms peaked around ovulation and menstruation, I was able to get the GP to consider that IBS wasn’t actually my problem.

She still packed me off for an ultrasound and a colonoscopy, though, in order to rule out truly scary shit like ovarian or bowel cancer. That was a fun couple of months, I can tell you.

Ask around your family: There is an increasing amount of evidence showing that endometriosis runs in families. Talking about your period with your mother may be the last thing you want to do, but if she can tell you “Oh yes, I have the same problem”, your GP may take you more seriously. The fact that I’m related to several other women with this condition helped me get a gynaecology appointment relatively quickly.

Be persistent: Keep asking for appointments and keep presenting your evidence, even if you initially get referred to a specialist who isn’t a gynaecologist. I gave the gastroenterologist at my colonoscopy appointment my “pitch” about why I thought this was endo, not IBS, and he was receptive enough to the idea to write to my GP and recommend sending me to the women’s hospital. That was the tipping point for me.

The entire process, from first GP visit to waking up on the ward after surgery, lasted from January to August 2013.

Next Week: Getting Treated

In the next instalment, I’ll talk about my experience of endometriosis treatment (spoiler alert: some of the medications are just as unpleasant as the condition itself). I’ll also describe some changes I made that immediately offered relief for my symptoms. You may want to try them.

In the meantime, if you have more questions, you can check out Endometriosis UK, a charity that provides information about the condition and aims to raise awareness.

 

 

 

 

 

 

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