My Endo Story- Living with Endometriosis
I’m one in 10 women who suffers from a silent illness that’s been recognised as one of the 20 most painful conditions.. Endometriosis.
“Endometriosis is a serious medical condition that affects millions of women, and many of them don’t even know they have it. The condition occurs when endometrial tissue is displaced from the uterus. This tissue follows the rules of the body’s menstrual cycle by thickening, breaking down, and bleeding. But since it isn’t located in the uterus, the tissue simply becomes trapped instead of exiting the body. Endometriosis has the potential to cause severe pain and fertility problems.” – Health Prep
I was only 11 years old when I first got my period. From that first day I used to experience pain that I now recognise as being similar to the first stages of labour.. Every month! I used to have to be collected from school once a month due to crippling pain. I used to joke it felt like I was giving birth to a pineapple while being stabbed in the stomach with a knife and hit with a baseball bat in the lower back. All while I also had stabbing pains on my inner thighs and the bottom of my feet. This then used to also lead to passing out and vomiting on many occasions because the pain was too much to bare..it was No joke!
Like most ladies it took nearly 10 years for my Endometriosis to be diagnosed. It was always palmed off as “bad period pains” or the most common one IBS. I even got told I had a fat intolerance once!
At the age of 14 I went to a women’s clinic where the Dr There explained Endometriosis and said that this was a probable cause, but she didn’t refer me to anyone or do anything really EXCEPT put me on the contraceptive pill as a solution. My pain never went, and I missed more and more days of school, I missed social events and I felt embarrassed at suddenly being in crippling pain and not being able to function. I loved PE at school but some days I just couldn’t participate because I couldn’t walk, and it was hard to convince teachers I wasn’t just being a sook.
I tried a few Doctors but most Doctors solutions were to keep changing my pill. This mind you didn’t seem to do anything as I ended up getting my periods every 2 weeks at one stage. At the age of 17 I had an eating disorder, which lead me to lose my period (but not the pain or bloating that occurred monthly) and this then became the blame and focus of my issues.
Finally at the age of 21 I had enough and walked into the room of the new female GP that started at the practise and told her everything. I told her I wasn’t interested in changing my pill and that I wanted answers. This amazing lady was fresh out of university and this was her first GP placement! She was eager to learn and give me answers! She got books and everything out! She then asked me who my gynaecologist was.. I didn’t have a Gynaecologist; I didn’t even know what they were meant to do. Naive me thought they were for pregnant women. (Yeah I know!). This amazing woman was completely shocked that I was 21 years of age and had not been referred to see a gynaecologist when it was clear there wasn’t something right.
So the next day I was sent for scans and the day after that I was in to see one of her University mentors and one of Brisbane’s best Gynaecological surgeons, Dr Ng. Dr Ng took one look at my scans and he didn’t need to really ask for more information. He knew without a doubt I had Endometriosis. Along with that due to the pill my endometrium wall was extremely thin; this was the cause of my constant periods. He also could feel a lump that was sitting right at the entrance to my uterus. This was later found out to be a benign tumour. I found extreme pain when trying to insert tampons!
Literally 2 days after this I found myself ready to go into surgery to have a laparoscopy. This laparoscopy confirmed that I did indeed have endometriosis, and A LOT of it! It was all through my pelvic region, on my ovaries and they even found some on my bladder and stomach. It’s any wonder I was in so much pain! They injected a dye into my fallopian tubes to make sure they were clear (they were!) and removed a tumour 4-5cm in diameter from inside my uterus.
Can I just say that recovery from a laparoscopy was worse than the recovery from the birth of my son. I needed help going to the bathroom, this included needing someone to wipe, sitting up, getting dressed (I needed help putting underwear on). Imagine trying to get through life without being able to use ANY of your abdominal muscles. I would like to give a huge shout out to my mum right now who I bet never thought she would have to wipe my butt again once I was past the age of 5!
The good news about this was I had a dramatic decrease in pain! I was told that I would need to look into having children within the next 2-3 years otherwise I might have some issues conceiving. Fast forward 4 years when I was ready to have a child it took me 9 months and reproductive acupuncture to fall pregnant. However I feel lucky that I was fortunate enough to conceive as I know a lot of women face infertility with endometriosis.
I’m now 31 years old and my son is 5 years old. I have noticed a lot of the original symptoms return. I get bloating twice a month both when I’m ovulating and when I’m menstruating. I also get pain and sensitivity during time of ovulating, including stabbing pains in my abdomen while having adult cuddles with my partner. I know now this isn’t normal! I will be a lot more vigilant this time around in knowing what I’m in for and knowing that it’s not normal to live in pain 2 out of 4 weeks of the month.
So what are the signs to look out for?
These can vary from woman to woman;
- Pain- oh the pain! This is probably the biggest symptom. This pain can occur before, during and after your period as well as during or post sexual intercourse. The pain doesn’t discriminate where either. Usually its felt in the stomach, back, pelvis, or as above in my case add in pain on the inner thigh and planta fascia of the feet.
- Irritable Bowel type symptoms like Diahorrea, wind/gas, fluid retention and excess bloating.
- Pain during ovulation, you almost feel like you’re about to start your period only it’s just your body going through the ovulation process.
- Bladder pain/Pain while urinating- is common to those suffering from endometriosis due to the pressure of increased water retention, which creates pressure on the bladder. You may also notice an increase in bladder infections, after intercourse, as well as the needing to urinate more frequently and urgently.
- Heavy, Clotting and prolonged periods- If you need to change your sanitary item of choice more frequently then every hour and it lasts longer than a few days this can also be an indicator. Or if you find your menstrual blood turns dark, appears sticky, stringy or has lumps or clots in it you should also take this seriously.
- Suppressed immune system- this might show as always getting a cold, food allergies, skin sensitivity etc
- Mood Swings- and this isn’t just your usual PMS. Due to unbalanced levels of hormones, women with endometriosis tend to suffer from extreme mood swings. This is caused by elevated levels of the hormones estrogen and progesterone. In minute you will be happy and laughing, in a blink of an eye you could be ready to give the devil a run and a few minutes later you could be crying over how beautiful a stick looks.
What are the Causes of Endometriosis?
Unfortunately no one really knows what causes Endometriosis. Researchers aren’t sure how endometrial tissue manages to migrate from place to place.
The main possible causes that they believe could be responsible are;
- Retrograde (backwards) menstruation.
- Family history of endometriosis.
If any of this resonates with you, I strongly advise to go and see your doctor. You know your body best out of anyone so if you do see a doctor and their diagnosis doesn’t sit well with you go and get another opinion. Keep going until you are satisfied. Ask for Scans and ask for more information and explanations. It is not normal to be in severe pain during your menstrual cycle.
I hope my story has helped at least 1 person to go and seek help and we can create more awareness of this wide spread illness.
I have found Estrodetox by the Pure Essentials Australia to have been a great product to help with some symptoms of my Endometriosis like PMS, Fluid retention and Estrogen Dominance.