An Endometriosis Story
Interview with Siobhan Donoghue
Endometriosis is a condition that affects millions of women worldwide, yet it often goes undiagnosed or misunderstood for years, leaving women to navigate a maze of pain, misdiagnosis, and inadequate treatment options. In this conversation, Siobhan Donoghue shares her deeply personal journey through endometriosis, detailing the challenges she faced, the lessons she learned, and the unconventional paths she explored to reclaim her health.
Siobhan’s story is one of resilience, spanning decades of struggle with severe symptoms, dismissive diagnoses, and invasive treatment recommendations. From her early encounters with mystery pelvic pain to discovering the transformative potential of yoga, herbalism, and circadian living, Siobhan’s insights shed light on the often-overlooked aspects of managing chronic conditions.
With thanks to Siobhan Donoghue.
Opening
1. Siobhan, thank you for sharing your story with us. To start, could you tell us a bit about your background and journey with endometriosis up to this point?
Thanks for being interested in this far-too-common challenge women experience. My background is in architecture, yoga, and herbalism. I am an Iyengar yoga teacher and currently immersed in the depths of an herbalism degree. I love learning. My current rabbit hole is Quantum Biology and Circadian Living, which has partially sidetracked my herbalism studies—but they do overlap.
With regard to endometriosis (endo), I got my period at the age of 13 and immediately experienced very long periods with excessive bleeding and pain for the first few days of every cycle. My GP never commented, and I never asked. By 17, I started having mystery pelvic pain attacks that would send me to the hospital. Not knowing why, I was told it was my "sensitive stomach," and I just accepted that fate. Occasionally, my GP used the term Irritable Bowel Syndrome (IBS), but there was never an official diagnosis. I followed their suggestions, thinking bloating and stomach discomfort were just things I had to live with—but I had no idea why.
When I moved from London to Australia, my back went out. At the time, I never thought the stomach issues could be related to my back problems. In my mind, they were completely separate. Then, in my mid-40s, my body began shouting louder—this time with acute heavy bleeding. Again, I trusted the doctors who told me it was fibroids. I changed my diet, researched my options, and decided to wait for menopause rather than undergo surgery to remove the fibroids.
When I moved back to Canada, acute pain attacks started. In fact, they began while I was in India on my journey back home. After many emergency room visits, each visit resulted in a different diagnosis. I trusted those conclusions without question at the time.
Now, knowing what I know, I challenge every medical decision. I understand that even well-meaning doctors can misdiagnose, and a diagnosis is not always the final truth.
Early Struggles and Misdiagnosis
2. You mentioned experiencing acute pelvic pain attacks starting at age 17. What was it like to go through that as a teenager without a clear diagnosis?
I had a deep level of respect for my GP, so when she said, "We don’t yet know," I was okay with that and allowed myself to be “studied.” I had gastro investigate, and when they found nothing, I accepted it.
My GP told me in passing—not as an official diagnosis—that I had IBS. That was the first time I heard of IBS.
3. How did being labelled with IBS by your GP and given anti-inflammatory drugs impact your quality of life in those early years from 17-24?
I had less fear of intense period pain as I had "super" drugs to help. I got on with life.
However, a key nugget no one told me was how important it was to eat when taking anti-inflammatories. Long story short, I disrupted my gut to the point that I cannot tolerate pain medication in my stomach.
It became a challenge, especially with monthly period pain keeping me in bed.
4. During the years from 24-36, when you experienced debilitating monthly pain, how did you manage to continue working in the adventure travel industry?
I figured out I could take a maximum of 2 Panadol per day during my period. The acute days were day 2 and day 3. On those days, I made sure I would not be travelling and would have a hot water bottle nearby.
If I was travelling, I simply ate pain meds, ignoring my stomach pain to avoid the acute pelvic pain. Lesser of two evils…
Lifestyle Changes and Ongoing Challenges
5. What prompted you to make significant lifestyle changes like stopping dairy, taking an office job, and moving to Australia? Did those changes provide any relief?
Pain is the motivator I am mainly driven by. The stomach pain I experienced while working in travel led me to try acupuncture after allopathic options proved unsuccessful.
Office work? I sought living in one place (and working in one place) rather than living out of a suitcase, as the stomach problems were so prominent. The move to Australia came roughly eight years later, when it seemed like a nice change from dreary London during the early financial crisis of 2007.
Did any prove manageable with acute pain? I would say yes. Health (and illness) is never static, so I always viewed my states of discomfort as temporary. I never "lived" as an ill person. I simply moved forward and tried another modality until I saw results.
Even when I could barely walk after moving to Australia, I never thought it would be permanent. Mental outlook has a huge influence on our general health.
6. Could you share more about your experience with the uterine polyp surgery and how that fit into your health journey?
I’d had random excessive bleeding to the point of hospitalisation a few times in my 30s and 40s. After the third time, doctors finally saw what “might” be the cause—a uterine polyp.
Some doctors suggested ignoring it, while my partner at the time, a histopathologist, strongly recommended that it would be wise to get it removed. So, I had the day surgery, and that was that.
Given I was travelling all the time, I never got a full report. It was not cancerous, but I wonder if, had I received a full report, they might have seen what was happening with the endometriosis.
7. How did the back pain and loss of feeling in your leg at age 38 affect you physically and emotionally? What kept you motivated to keep seeking answers?
It baffles me how motivated I am with regard to pain. I experience pain and then just keep chugging along as best I can. I guess that’s what chronic pain does, but the back pain made my legs cave with every electric jolt. The hardest part was putting socks on.
Winter in Melbourne can be cold without socks. It’s not like a Canadian winter, where we have good insulation. The beach “shack” we lived in was tin and without insulation. All heat flew out the window, so I was chronically cold for four winters. The pain limited all movement, but I kept shuffling along and just assumed it would get better. My pain would lessen, and then a bump in the car or tripping while walking would set me back.
I kept trying different modalities to help: Bowen therapy, Pilates (both mat and reformer), physiotherapy, and walking in water. I even got an oversized wetsuit to go into the ocean since we did not have a pool nearby. That was comical. I got stuck in the wetsuit after walking into the river in Barwon Heads.
Big wetsuits are pointless, but I did not know that. The suit filled with water the moment I got in, so I trudged home cold and wet. Once home, I couldn’t get out of the wetsuit without jolting pain ripping through my body. I sat in the garden and cried. Then, little by little, over the course of an hour, I got myself out of the wetsuit and never put it on again.
It took three years to get my mobility back. I attribute that to acupuncture and aggressive treatment from my TCM doctor, who fully understood my disc issue. Then I rebuilt my body with Iyengar yoga.
Turning to Alternative Therapies
8. You credit Iyengar yoga with helping you regain mobility after 3 years. What was it about that particular practice that resonated with you?
I tried a multitude of modalities, but each one left me with more pain. I had been introduced to Iyengar yoga when I had minor back pain in NYC, so when I moved to Australia, I sadly found no practitioners near me.
When I had the strength to drive, I went to nearby Geelong. The Iyengar school owner there understood back injuries, and that catapulted my healing forward. After the breakup of my relationship (most probably worsened by being in chronic pain), I moved to Melbourne and dove deep into yoga with yet another senior Iyengar teacher who also understood back pain.
With regular practice and building up my leg strength, I became pain-free. That inspired me to learn to teach so I could practice on my own and help others. Part of our training included 100 hours of therapy class support, where we saw how helpful yoga was for various ailments and conditions.
9. How did your yoga teacher training influence your perspective on managing your health holistically?
I came to understand how the body heals itself—we just need to help it along with movement and mind practices.
While in NYC, I learned rhythmic breathing, which I believe might be the real source of stress management. It helped keep my acute pelvic pain attacks at bay during a period of time.
10. When you radically changed your diet at age 47, what were the most challenging adjustments? Did you notice any improvements?
Getting plastic and fragrances out of my environment and life was essential. These estrogen triggers are everywhere: face care, body care, house cleaners, food, cookware. The list is long and takes time to research.
Even with organic products, the "fragrances" can make it problematic for hormone balance. These proprietary ingredients are deemed "secret," regardless of whether they are cancer-causing. We allow too much leeway with the cosmetic industry.
Perseverance and Self-Advocacy
11. During your regular emergency visits in Canada from 2019-2021, how did you cope with the frustration of receiving different diagnoses each time?
I just accepted it until they wanted to remove my uterus. Then I pushed back and started to question everything.
I dove deep into the research and learned that we are given few options when, in fact, there are more to choose from—even taking a different route from surgery and pharmaceutical treatments.
12. What gave you the strength to advocate for yourself and fight against treatments you weren't comfortable with, like the recommended hysterectomy?
I am the first person to ask that. I have no idea where the energy to fight and advocate for myself came from. A lifetime of pain? I was fed up with hospital visits and finally said NO. I want more.
I pushed them to look deeper, and only then did they see the scar tissue. After an MRI, they found something they were very concerned about. I had waited six months for the MRI, and they called me in the next day when they saw the growths. They did a biopsy the following day.
13. How did you go about finding specialists to help properly diagnose and treat your endometriosis? What advice would you give others in a similar position?
I was allocated the gynaecological surgeon from the emergency room, and she remained my principal surgeon since I had no GP. All this occurred during the peak of COVID outbreaks, so seeing anyone was a challenge.
I kept asking people I knew and was even prepared to go to London, Ontario, for a second opinion. At one point, I almost returned to Melbourne. I kept trying to get referrals to the laparoscopic surgical specialist, but my allocated surgeon kept telling me my body would not wait.
Still, I persisted in seeking other specialists for a second opinion, even though my surgeon repeatedly told me no other specialists would see me. I never gave up, but when it seemed my body had given up, I felt I had to agree to surgery. Only then did I finally hear from the laparoscopic specialist.
It was like a movie script: in the middle of the night, I experienced yet another serious bleed to the point I honestly thought I would bleed out. Nothing would quell the bleeding. I leaned into it and acknowledged that I’d had a great life. If I survived the night, I would call the specialist's office and also agree to the surgery with my surgeon.
Needless to say, the specialist had a cancellation when I called the next morning.
Looking Forward
14. Now that you've been officially diagnosed, what have you learned about the true causes of your condition? How are you managing your health today?
Endo and adenomyosis are the result of a hormone imbalance. What is causing that can be multi-fold. I believe mine was from a leaky gut, initially compromised by antibiotics used for too long and the pesticide glyphosate.
I’ve had gut issues since being a small child, but after a year of taking antibiotics for acne and having a diet mostly made up of gluten, my pain attacks started. Another cause could be genetic—my grandmother also experienced an emergency hysterectomy, but we will never know why.
Being diagnosed with fibroids by a few doctors in Australia, only to be told in Canada that they were never fibroids, baffles me. I do wonder if all my laptop use on my lap and the radiation from it might have created a shift in my body where the fibroids changed. We are only now learning the effects of Wi-Fi and cellular signals on the body.
How do I manage it? I almost never skip my breath work and meditation. This helps me manage stress in my body. I have a tendency to concentrate my stress in my gut, so meditation and breath work make a huge difference.
I still avoid gluten and most dairy. I always dabble and continuously test my intolerance in case I heal my gut again like I did in my 30s. However, I am quickly reminded that my body does not like milk or bread.
15. Through writing your book and sharing your story, what message do you most hope to convey to others struggling with endometriosis or searching for answers about their health?
Living with the label is both a curse and a helpful insight. If I’d been labelled with endo as a young girl, I might have limited my movement and never seen the world. I probably would have a less problematic gut, though. Maybe. Everything is a maybe, so it’s best to be positive and try to be happy.
The second lesson is to ALWAYS get a second opinion when it comes to surgery and the uterus/ovaries. I was told my only option was to have a 12-inch incision; the uterus would be removed, ovaries were not salvageable due to scar tissue, and I would lose my cervix. They also warned that they would probably perforate my bowel, leaving me with a colostomy bag. I thought: NO. That is not for me.
Good friends convinced me I needed a second opinion and that laparoscopic surgery could be done. My surgeon said it was impossible. I challenged everything. Sadly, I did not get to keep my uterus, but I did keep both ovaries, and it was all done laparoscopically. The healing outcome was better, and the procedure was completed as a day surgery with no bowel perforation. I barely took pain meds postoperatively, as my threshold was so high.
I managed all my pain for the year before the surgery with supplements—seriously. I was amazed that acute pain like mine could be managed without pharmaceuticals. I avoided addiction and the negative side effects. It would have been easy to become addicted to pain medication; the pain is unimaginable. Remember, I passed out from the pain or fell to my knees. Too many women are told the pain is not real or is “normal menstrual” pain.
Now, three years post-surgery, I live without any supplements or pain medication. I feel very free. I see the sun come up daily to work with my leptin hormone, which controls all the hormones in the body, so I sleep really well as a result. Circadian living to maintain balanced hormones is simple, but few know about quantum biology and circadian living.
I really hope that I provide women with options. Knowing we can say NO is important when we are scared and weak. Knowing someone else said NO and overcame the perceived insurmountable challenge gives hope and inspiration.
Australia
https://www.amazon.com.au/dp/B0DPR1VZY5
Canada
https://www.amazon.ca/dp/B0DPR1VZY5
UK
https://www.amazon.co.uk/dp/B0DPR1VZY5
US
https://www.amazon.co.uk/dp/B0DPR1VZY5
Canada
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Great article, especially "I love learning". Me too. This plus Coleman's last, together, shine a light on my current predicament when a doctor (my 3rd) told me I would go blind if I did not submit to their treatment. I said, "I don't believe you". He said " there's a 50% chance you will". I said, "prove it, if you can't, then I'll take my chances". Know your body is essential.
I did my duty. I did all the research. Come to find that the side effects of this treatment are horrific, just like the covid vax. Requires complete medical history and contraindications before treatment begins yet he wanted to start immediately. A classic case of treatment being worse than the condition.
To conclude: Medicare data base and NIH have found that heart attacks, strokes, blood clots, 6th nerve palsy and anaphylaxis have been reported in 57% of people who took this treatment. I'm a cardiac patient. Would you submit to this? Or take your chances.
Endometriosis is associated with Candida overgrowth according to Dr. William Crook in the Yeast Connection and the Woman. What is frustrating is that progesterone is very effective for endo but yeast has to be managed. Progesterone can make an existing overgrowth worse by several mechanisms.