Endometriosis: My Twenty-nine Year Endo Story

My name is Tanya and I’m 46 years old. My endometriosis journey is quite a long one, which started when I was around 14 years of age. I was told many times during my adolescence and as a young adult that my pain was normal, later being diagnosed with Irritable Bowel Syndrome (IBS) during my thirties.

I finally was diagnosed with Stage Four Deep Infiltrating Endometrioses (DIE), which affects my bowels, urethra, pelvic wall and ovaries. Unfortunately I received the bonus diagnosis of adenomyosis and fibroids!

It took me a long time to find my voice. I had to learn to advocate for myself to finally get answers.

I’m telling my story in the hope that others will relate. I want to help women avoid years of constantly being told “…your pain is normal” and, “you’re one of the unlucky women who experience heavy and painful cycles.” I hope to cancel the belief that getting pregnant and having babies would fix everything.

Let’s go back to the start. In my early teens I first experienced very heavy and painful menstruation, which kept me from school, from participating in sports, and from socialising with friends. My mum took me to the doctors many times, only to be told that this was just “… my normal, and that I would have to learn to live with it.” I remember being told, “Take Naprogesic, and you’ll be fine.”

Well, the Naprogesic didn’t help.

I was subsequently placed on an oral contraceptive, although I can’t remember which one. This helped to regulate my periods, and it lessened the duration, but my periods were just as painful. I can’t remember how many times I brought up the pain with various doctors over the years, though each of them simply reinforced their incorrect beliefs. “This is just normal for you and you have to deal with it.”

By the time I was in my late teens the oral contraceptive wasn’t really working for me. It was making me feel nauseous every time I took it! I was then offered Depo-Provera, which is an injection every three months as an alternative.

I thought that this was great. No periods - perfect!

Let’s fast forward to getting married at 24, when I decided I needed to take a break from being on Depo-Provera.

I think that I always knew that my ‘normal’ wasn’t actually normal, and I had developed a fear in my head that I wouldn’t be able to have children. After talking to my husband about it, we decided that I would come off the Depo-Provera, and if I happened to get pregnant, we would be happy. I accepted that heavy, painful periods were just going to become my way of life.

Ten months later I was pregnant, and over the next five years I was either pregnant, extremely sick with hyperemesis gravidarum, which is extreme morning sickness, or breastfeeding. I’m incredibly grateful for my three boys, and so happy that I decided to have my children when I did—and that I didn’t have issues with fertility.

My ability to conceive seemed to cause the doctors to dismiss my gynaecological concerns, as many of the GPs were under the assumption that as my pain and menstrual issues were not affecting my fertility, “… it must be okay,” and “… not that concerning.”

I found it annoying, and it worried me that many doctors only placed value on my gynaecological concerns if it was somehow related to fertility, as though it’s okay to go through excruciating pain, missing work and life events due to my period.

I recall having an abdominal ultrasound in my early thirties and the sonographer asking, “… have you had a caesarean?” I hadn’t. He even invited another sonographer to come in to look. Thinking back to that moment I believe that both sonographers most likely did not know what they were looking at, and just assumed that it was scar tissue from a caesarean.

I finally got my answers at the age of 42, and no longer did I feel like a hypochondriac.

I feel lucky my initial gynaecologist realised she was out of her depth after my initial scans, and had referred me to a surgeon that specialised in endometriosis excision surgery.

I’ve received mixed advice about Hormone Replacement Therapy (HRT), and whether or not it will cause any residual endometriosis to return. Consequently, I’m now considering looking bioidentical hormones.

One of the most valuable parts of my recovery was finding an amazing women’s physiotherapist.

At times the treatment was painful and quite invasive, but it really helped with my recovery. I learned it was common for women with endometriosis to have overactive pelvic floors, due to chronic pelvic pain. I learned to relax my pelvic floor, and how to use my bowels and pass urine more effectively. Without this, I would most likely be in a lot more pain.

I’m now three years post op, and glad that I finally received the medical treatment I should have received many years earlier.

I’m not completely pain free, but I’m so much better than I was. No more curling up in a ball during periods, no more embarrassing leaking situations, and no more trying to convince doctors that something wasn’t right. I wish that I knew then what I know now.

I’m so happy to see more discussion and education about women’s health. Unfortunately there are still many doctors that are still sharing outdated information to their patients. Throughout this whole process, I think the best advice that I have for others going through what I did, is to find your own voice, get second opinions, insist on a referral to a gynaecologist, and educate yourself.

I am incredibly thankful for organisations like QENDO. They have made my journey a much more informed one and have given me the strength to speak up and share my story.

This Blog has been written for QENDO and shared with consent.

This blog does not constitute medical advice and is a personal story by someone living with pelvic pain conditions. The medications, supplements, health providers mentioned in this blog are not endorsed by QENDO nor does QENDO receive financial incentive for these products or by the medical professionals mentioned. Please consult with your health care team before considering taking any supplement, medication or treatment pathway.

The materials available on or through the website qendo.org.au [‘QENDO’] are an information source only. Information provided by QENDO does not constitute medical advice and should not be relied upon to diagnose or treat any medical condition. To the maximum extent permitted by law, all contributors of QENDO make no statement, representation, or warranty about the quality, accuracy, context, completeness, availability or suitability for any purpose of, and you should not rely on, any materials available on or through the website qendo.org.au. QENDO disclaims, to the maximum extent permitted by law, all responsibility and all liability (including without limitation, liability in negligence) for all expenses, losses, damages and costs you or any other person might incur for any reason including as a result of the materials available on or through this website being in any way inaccurate, out of context, incomplete, unavailable, not up to date or unsuitable for any purpose.

Kathryn Thomason21 January 2022