My Endometriosis Journey Part One

***Disclaimer: I am not a medical expert, and I do not know everything about this disease. If you are experiencing symptoms you associate with endometriosis, please see a trusted medical professional. And if you need help finding a medical professional please, visit the Endo foundation website

Hello, world! So, I have decided to be a little more open and transparent about my life on both my blog, Instagram, and YouTube channels. I want to be able to share who I really am with all of you, and that includes the good and the bad. I’m going to start a series here on my blog and over on my YouTube channel about my endometriosis story, and I hope that it will help educate you on what this chronic illness is, how it works, and why it’s important to be a medical advocate for yourself, and other women, and since March is also Endometriosis Awareness Month, what better time than now to share?

Before I launch into my personal story, I figured that I should give you guys some information on what exactly endometriosis is, since it’s a little bit of an enigma, even to those of us who have it. First things first, endometriosis is a disease which is caused by menstruation – something all of us with a uterus experience. This also means that it’s not only cisgender women who experience and suffer from it – anyone who has a uterus, including transgender men can have endometriosis and should be treated equally to any woman who is suffering. 

Endometriosis occurs when tissue which is similar to the endometrium lining of the interior of your uterus migrates outside into the body – obvi, not where it should be. “It can attach to any of the female reproductive organs including, but not limited to, the uterus, fallopian tubes, ovaries,  uterosacral ligaments, the peritoneum, or any of the spaces between the bladder, uterus, vagina, and rectum. Endometriosis can also involve the bowel, intestines, appendix or rectum.” – In rare cases, endometriosis has been found attached to organs such as the lung, heart and even brain.

It’s estimated that 1 in 10 women or around 200 million women worldwide are suffering from this disease. And on average it takes between 7-10 years for women to receive an actual diagnosis. That is because endometriosis can only be diagnosed through a laparoscopic surgery and a biopsy. Imaging testing can be helpful but is not a definitive diagnosis, if you have had a doctor tell you after an ultrasound, CT, or another imaging test, that you have endometriosis – push for the laparoscopy to get a 100% definitive diagnosis.

So, here is the really disappointing news… there is absolutely NO cure for endometriosis. There are ways to treat, such as excision surgery – which your doctor will usually perform when doing the initial laparoscopic diagnostic surgery. There are other options such as ablation, or cauterization but those are not recommended as they lead to a higher chance of the endometriosis not being fully removed. A huge myth that many uninformed doctors perpetuate is that a full hysterectomy will cure you. This is not true and should rarely be the answer for a patient.

You can manage your endometriosis in many ways such as low dose birth control, IUD, painkillers, and hormone therapy. It’s actually pretty frustrating because many women will still suffer from debilitating symptoms even while treating with birth control or other options. Please remember, this is a chronic illness and one that women suffer from in ways you cannot imagine. Personally, I have missed out on a lot of life because I am stuck in bed from pain, too exhausted, and depressed. Be kind to those with “invisible” illnesses, and offer support and love to those you know who are suffering.

Another major issue from endometriosis is infertility. “Infertility is often defined as the inability to conceive of a child. However, in endometriosis cases infertility can also take the form of a female not being able to carry a pregnancy to full term, often suffering miscarriages.” – There should not be all hope lost if you are a woman who is experiencing infertility as part of your endometriosis journey – many women are able to conceive and carry full term, healthy pregnancies with the aid of excision and reproductive technologies.

There’s so much more we could discuss on endometriosis but for now, we will stop here. Again, if you believe you have endometriosis or want to learn more, please visit the Endometriosis Foundation of America website, and talk to your trusted medical professional.

I will be back next week with my diagnosis story, so please subscribe to my blog if you haven’t already (click the menu in the upper left corner). If you have questions for me, please leave them in the comments below, or share your story with me.