A woman with pelvic pain is a human being in need of help, not a liar

Taking control of your endometriosis treatment

“Endometriosis is a condition in which tissue similar to the lining of the uterus (the endometrium) is found outside the uterus, most commonly in the pelvic cavity.
It can grow on organs including the ovaries, uterus, bowel and pelvic sidewall, causing inflammation and pain.”

- excerpt from “What is Endometriosis?”, The Guardian, Sept. 27, 2015

Belief and trust form essential components to communication. Many of us aren’t receiving adequate care from our doctors because they simply do not believe what we say we are experiencing.

Lately I’ve been reading a lot of stories from women who aren’t receiving treatment for endometriosis or adenomyosis. For so many of us with this disease, we’ve spent our entire lives being told by our loved ones and trusted medical professionals that we aren’t in as much pain as we think, that these are simply normal menstruation pains and we’re just being dramatic, or even if they’re willing to admit that we do have a disease, they want us to treat it with pain medication, denying us treatment if we resist their palliative medications.

We desperately want to feel good and strong again.
adenomyosis uteri (endometriosis of the uterine wall)

It has taken me years to find doctors who believe me. For the bulk of my life, the people I loved and trusted thought I was making it up and I was lazy or attention-seeking (which could not be further from the truth). Multiple doctors told me that the pain was psychological, and trusting them, I spoke to therapists (which was nice, but it didn’t help the disease a bit). Years later I have found that I’m dealing with a more serious progression of the disease than I would have if I’d had surgery for this earlier, but back then I did what I was told to do by doctors. Unfortunately I had no access to other women with this disease, and the one book that I found about it implied that the disease was caused by some sort of emotional deficiency, a vagary I have noticed is common in many early analysis’ of diseases before we actually know what causes them and what the cure is.

Agonizing menstruation does exist, and it is a sign that we are sick, not that we are lying.

Now I’m older, and I am a very different woman than I was back then. I feel strong and clear about who I am, and I know that if I feel pain, it is real and I can trust my senses. I know that I am telling this truth and I am working hard to find a doctor who will treat me. Currently I am still in the process of finding the doctor who will perform this surgery and clear out these painful growths, but now I have a lot more people to ask for help …

The internet has brought many amazing and irritating things into our lives, but one of the most fundamental boons it has brought to into my life is the ability to easily communicate with other endometriosis sufferers. Through social networks and friends online I have found hundreds of women all over the world who are experiencing similar physical symptoms and experiences with doctors. This has given me the strength to stand up to doctors and loved ones who will not listen to me and who won’t believe in endometriosis or the symptoms it causes. However, many women are still suffering because they do not trust themselves, (which is understandable after decades of being trained not to trust their own feelings by their families and friends). This is an untenable situation and we need to draw some very basic lines in the sand to delineate what constitutes unacceptable behavior in our doctors, and at what point we need to consider changing care practitioners in order to protect our health.

Things doctors do which are unacceptable and deleterious to our treatment:

  • Being physically aggressive in performing internal exams and causing a unnecessary pain, (especially since this is pain on top of an already painful disease).
  • Disbelieving the symptoms of endometriosis we tell them we’re having, (despite the fact that everyone else with endometriosis has similar symptoms).
  • Insisting on performing painful and unnecessary tests, (particularly if we’ve already told them that they’re unnecessary).
  • Prescribing a medication or treatment which we cannot tolerate or do not want and insisting we take them.

When a doctor does these things, I stop seeing them and I explain why, in the hopes that they will amend their behavior for future endometriosis patients. In the past I simply went to the doctors I was told to, accepting their treatment blindly. Because of this I have been forced to educate myself about what this disease is and I have found that there are very few doctors who will treat endometriosis, and out of those who will, many do not have the surgical expertise to excise the growths.

This situation cannot continue, we need to speak out about our experiences (no matter how embarrassing or awkward it feels), so that this untenable situation changes. The people we love need to understand that this is a real, documented disease, agonizing menstruation does exist, and it is a sign that we are sick, not that we are lying. A woman with pelvic pain is a human being in need of help, not a liar. They need to assume we know our bodies, that we can feel what is happening, and most of all that we desperately want to feel good and strong again!

You know your body better than anyone outside of it ever will. Listen to yourself, trust yourself…

If you are suffering you need to know that your body is yours. No doctor or loved one knows how you feel as well as you do. You know your body better than anyone outside of it ever will. Listen to yourself, trust yourself, and get into the research, get to know the disease so that you can rebuff negative care in an informed and clear manner. If at that point, your doctor still doesn’t hear you, move on.

Every human ought to have access to real, effective treatment for painful diseases, and women with pelvic pain are no different from anyone else. Trust us.

If you’re interested in learning more about this disease, there is a fantastic series of articles up on UK newspaper, the Guardian about it. Start here and follow the suggested links.