Endometriosis is a progressive chronic gynaecological condition in which endometrial cells, or cells that line your uterus grow outside the uterus. This is abnormal growth and behaves like a period every time you bleed. Basically these abnormal endometrial cells tend to stick to organs generally in the pelvis. This can include, the bowel, bladder, ovaries and fallopian tubes, but is also known to spread to other areas of the body, but this is much rarer. As mentioned these cells respond to your hormones and bleed into the abdomen and pelvis with each period. This is why it's such a painful condition.
Thankfully a lot more research is being done into the causes and treatment of endometriosis, but at this point no one knows why this actually happens, there are many theories but no one knows for sure.
Natural therapies offer some explanations but this is a subject for another blog.
Symptoms vary with everyone women, but the main symptom is pain, it's usually severe and can vary from being just with a period to everyday of the month. The pain can be associated with sex, exercise , ovulation, passing urine or having a bowel motion. Heavy periods with clots is also a major presenting symptom, you can often bleed for a long time, spot between periods or your periods are just all over the place. Often women will experience irritable bowel symptoms, with alternating diarrhoea and constipation and bloating. Many women report anxiety and or depression as well as headaches.
One of the biggest issues with endometriosis apart from the impact that it has on your life, is that it is it the major cause of infertility in women, generally due to the scarring and hormonal issues associated with the disease. Another issue with endometriosis is that it can take up to 8 years to get a diagnosis, mostly due to Doctors not taking your history seriously and investigating sooner, as a result much damage is done contributing to infertility. Getting an early diagnosis is critical to better outcomes.
My story is a little different to how the average women presents with endometriosis, so it give an insight into the many different presentations and how it can often be tricky to diagnose. I don't recall having major issues with my periods in my teenage years and as a young adult so that is unusual in its-self as many girls remember very clearly from the onset that their periods were extremely painful and heavy where they needed days off school or work every month. I had no problems falling pregnant with my 2 girls again unusual. My pain started a few years after the birth of my girls. It started out of the blue, again not common. I can remember every month my period would start and it would be fine, no real problem and on day 2 the flow would just stop and that's when the pain began, it would drop me to the ground and I literally couldn't move. For the next couple of days I would be bed ridden, it was like my abdomen was a rigid bit of wood, and If I moved at all my whole abdomen would just cramp, like someone was hitting me with a bat. It was difficult to function like this, but you do keep on don't you. It's interesting to note that the pain coincided with the flow of bleeding stopping, I still can't work out why this happened. My periods had become terribly heavy and I was also passing very large clots, typical of endometriosis. I put up with this for a few months when I finally had a laparoscope which showed the tinniest amount of endometriosis as well as two chocolate cysts on my ovaries. I felt like maybe I had been just a big baby if the endometriosis lesions were so tiny.
Girls what I have learnt since is that your level of pain is not associated with how much endometriosis they find. Everyone's pain is different, so never let your GP say any different.
Treatment was terrible, go on the pill and have hormonal treatment that essentially put you into early menopause ( I knew no better back then). I did this, but the side effects were terrible, my life was miserable: however it did help with my endometriosis symptoms for several years before my symptoms started to come back.
The thing is endo has a way of coming back. Its progressive so if you have a period and you have endo it does continue to progress and this can happen despite the treatments offered. This happened to me about 10 years later. The pain this time was different, nothing like my earlier pain. It was more like a dull, burning ache and it wasn't necessarily associated with my period, I could have this pain all month long, I actually didn't associate this with endometriosis. After putting up with this for a while I trotted of to my GP who ordered an internal ultrasound. The results shocked me!! Apparently I had severe endometriosis that was causing rigidity in my pelvic region and my only option was to have a total hysterectomy, I was only 39 and as far as I was concerned that was not an option, especially when my symptoms were so much milder than before.
The thing is I was not happy with this option so I started researching. I was also just starting my naturopathy, so I decided to do a total diet change, I went of gluten, dairy, sugar alcohol etc which is basically my detox for 12 weeks. Guess what, my pain disappeared and I felt fantastic. Don't underestimate the importance in diet when managing your endo symptoms. I was feeling very sure that I had cured myself so I trotted off for a repeat ultrasound. Bummer!! no change in the severity of my endo, just the pain was so much better. Interesting insight was that I became aware of just how something as simple as changing my diet could make a big difference to the pain. So what I did next was one of the best decisions that I made, I sought out a second opinion, with a doctor in Melbourne at the endometriosis centre at Epworth hospital. He confirmed the diagnosis, but offered me surgery to remove the lesions rather than a total hysterectomy. My surgery was extensive and required two specialist doctors but they did an amazing job. I was now very keen for this not to return, I actually took 12 months of Chinese herbs. Yuck!! If any of you have tried Chinese herbs, you know how horrible they can taste. I was determined for this terrible disease not to return. These herbs made an incredible difference to my symptoms and wellbeing, By now I am 42 years old and well and truly practicing natural therapies and doing everything that I knew to prevent its return, unfortunately I needed one more lot of surgery, before menopause solved the problem. My point here is that this condition needs a holistic approach, both with medical and natural interventions, working together to give much better outcomes for women.
With my personal symptoms there was a lot of issues with heavy periods, bowel issues, mood swings incredible pain along with feeling tired and depleted, however I did learn to understand my own individual menstrual cycle and also an insight to how my body works, I am very grateful for this knowledge and how it has provided me with the tools to help other women with their own endo journey. My point I guess is that presentation is that endometriosis will present differently for every woman. Please seek help if you feel you may be suffering from this condition
Girls, please heavy painful periods are not normal and should be investigated. Going on the pill for this at an early age is also not the answer. It often takes many different approaches to help manage and control this condition.
My take home points today are.
1. Never let your GP tell you that you just have to put up with painful periods. Get another opinion and insist on further investigation. A laparoscope is the gold standard for diagnosis. The earlier you have a diagnosis, the better for your long term health and fertility.
2. There are treatment options that your doctor will offer you, I would also recommend in conjunction with this looking at natural approaches that include diet, stress management ( stress was a big factor in my initial diagnosis) and exercise, alongside herbs and nutrients that can have amazing results. I have used herbs to help with hormonal imbalances, irregular periods, pain, and inflammation for many years with very good outcomes
3. If you suspect endometriosis, seek diagnosis and help fast.
4 Remember you are not alone and support is available. I am happy to chat to anyone looking for advice around this or any other hormonal condition.
Thank you for reading I hope my story will help you in some way. I would love your feedback