Years with endometriosis made me scour the internet for answers, explanations, & remedies. Spoke with many experts including my friends; Doc April Fabian and Doc Mae Syki-Young. Sadly, endometriosis and adenomyosis are both understudied and misunderstood. But no time for self-pity, not me, and so I began a crusade against most women’s health issues.
The thing with doctors is that they’re too busy to explain our illness. And so when I was made aware of these complications, it hit me hard – I’m not getting well. Instead of falling into despair, I decided to continue my advocacy, share my story so others can learn from it.
This post is to help my endo-sisters take care of themselves, save the rest of their reproductive organs in natural ways possible, manage painful symptoms, avoid further complications, when you’re like me – afflicted with endometriosis and adenomyosis.
So far, I had two surgeries since the time of diagnosis. First surgery when the doctor was proudly pre-occupied in using the latest technology, yet there was lack of sympathy and everything seemed fuzzy. I thought I had to seek another opinion. And so I did.
“The hard part is that you can’t really do anything—you can’t fix it.”
“You can treat heavy periods but you can’t get rid of adenomyosis without a hysterectomy. That’s why we don’t look for it [as doctors] because we can’t do anything about it.”
“People often think that with modern medicine, everything can be fixed. No, actually, a lot of things can’t be fixed but we can do a lot to minimize people’s symptoms,” explained Dr. Lisa Dabney (harpersbazaar.com)
I hope it’s not too late for me, my dear Nanay (grandma) would always remind and worry about me and I was like “I’ll be okay, this is nothing.” I’ve been always “matapang” which means brave in Filipino, in dealing with life’s hurdles. Until I discovered two years ago that I also have adenomyosis. So these two plus other adhesions are my arch nemeses.
“The medical definition of endometriosis does not even begin to describe the reality of what it means to have endometriosis. The next time you hear about endometriosis, please remember how devastating this disease can be to a person. While endometriosis can be frustrating, if you have a loved one, friend or co-worker who suffers from endometriosis, please remember to treat them with respect and compassion.” – vitalhealth.com
Endometriosis was explained in previous posts. You can check them here —
Adenomyosis in brief is a condition when the tissue that normally lines the uterus grows into the muscular wall of the uterus. Similar to endometriosis with displaced endometrial tissues but the affected area is different. In adenomysis it is inside the wall of the uterus, as to endometriosis is outside the uterus and can be on other organs of the body like intestines, appendix and lungs (rare).
Difference between Adenomyosis and Endometriosis
Though there are no specific cures, you can positively help your condition with pain management, healthy lifestyle, good/proper nutrition and exercise. The food we ingest affects our bodies especially our hormones. The endocrine system like the rest of our body systems work in complex structure that begins from ingestion of nutrients. And so we shall start with food.
There’s a diet called endo-diet. In endo-diet there are suggested foods to avoid and to take. See below;
Foods to avoid –
trans-fat – Recent research showed higher rates of endometriosis diagnosis among women who consume diet high in trans fat. Trans fat is found on fried, processed and fast foods.
red meat – the consumption of red meat can increase risk to develop endometriosis as suggested by some research.
gluten – there’s one study showed a decreased in pain by 75% after eliminating gluten in their diet.
FODMAP – stands for Fermentable Oligosaccharides, Disaccharides, Monosaccharides and Polyols. These are all types of carbohydrates. When poorly absorbed, these can aggravate symptoms of IBS (Irritable Bowel Syndrome) including bloating, constipation, flatulence, pain and nausea. It is best to read the labels and watch out for the following that has FODMAP in it; fructose, lactose, polyols like xylitol, maltitol & mannitol found mainly on artificial sweeteners.
alcohol & caffeine – these can promote inflammation and worsening of our condition.
Foods to eat (yay!)
fibrous foods such as fruits, vegetables, legumes and whole grains
iron-riched foods to replenish the blood loss in heavy bleeding or clotting. Examples are dark leafy greens, broccoli, beans, nuts and seeds
foods high in essential fatty acids such as salmon, tuna, mackerel, chia and flax seeds
anti-oxidant rich foods like oranges, cranberry, dark chocolate (yum!) and beets
Supplements as mentioned in this post – herbal supplements for Endometriosis were found to be also beneficial. Studies showed significant reduction in pain & other crippling symptoms using supplementation.
There’s just too much, ikr! but ladies don’t lose hope. We can do baby steps, and remember you’re not alone.
Let’s continue on next post! Thanks for your time 🙂
Envious of other countries where they have shown support, sympathy and awareness to those suffering in endometriosis. There’s even an organisation to help endo-sufferers raise fund, and begin valuable scientific research to find a cure for this “invisible” illness.
I would like to start a campaign here in my homeland, gather all my endo-sisters because I know we are stronger together – let us not suffer in silence!
I always believe that when we help others, we all rise up. And I want you to know that you are not alone…
A procedure called hysteroscopy was done to me two days ago. But before I jump into that, let us begin with the basics.
There are several endometrial procedures one has to undergo to diagnose and manage – endometriosis.
1. It takes an average of 10 years to accurately diagnose endometriosis.
2. One in Ten (1 in 10) women gets affected by it.
3. that’s about 176 million women in the world have endometriosis.
4. 68% of women with endometriosis were misdiagnosed with another condition.
*ultrasound – to diagnose this illness or other causes of pelvic pain. This test uses high frequency sound waves to create images of what’s inside the body. It cannot tell however if you have endometriosis but still helpful to see if you have cyst formations. This I need to have yearly or as advised by my Ob to monitor the cysts, scars or adhesions due to endometriosis.
*laparoscopy – this is an invasive procedure which was done to me more than 5 years ago. During this test, the doctor will make tiny incisions to insert the laparoscope – in my case 5 incisions, to see the endometrial implants, some may have to collect sample for biopsy and remove adhesions.
*SISH (saline infusion sonography) – is a type of ultrasound where a small volume of saline is inserted into the uterus, which then allows the lining of the uterus to be clearly seen on uterine scan.
*hysteroscopy – using a hysteroscope, similar to that of laparoscopy, the doctor inserts that to view into the cervix and inside the uterus. It can also remove polyp/s like in my case, and get samples for lab testing.
These procedures are very crucial in diagnosing and management of this condition. Please see your doctor to help and guide you in your endo-journey.
Hope this post helps, supporting fellow endo-sisters an once of pain at a time. See you again.
related articles and resources:
endometriosis is different from period pains
My Endometriosis Story: Journey through Pain
herbal supplements for Endometriosis
My endometriosis story: Journey through pain 2
My Endometriosis Story: Post Op
she has what?
Saw this battle cry unanimous for all of us suffering from endometriosis.
Living with endometriosis means a lot of patience when dealing with scrutiny and misunderstanding from people. They’d ask me, what do you feel? And I often replied, “indescribable pain.”
So what is really the difference between a regular menstrual discomfort and endometriosis?
Read full post;
NATIONAL INSTITUTE OF HEALTH, USA
In order to understand completely one’s affliction is to have one. Pondering through the imponderable – a condition that is widely misunderstood and how to live above “it.” The dilemmas we endo-sufferers usually encounter are finding the best and sympathetic doctors, accurate diagnosis that will not take years, and having the right treatment/managements. It all begins with understanding this condition.
Endometriosis is an ailment while menstrual pain is merely a symptom, an indication.
Menstrual cramps last about two days only while in Endometriosis, it can be everyday or intermittent. Cramps can be considered normal if it’s not disabling and severe.
It would be best to see your doctor if your menstruation starts to feel odd, irregular and or extremely painful.
I’m currently writing this post prior to an endometrial procedure. Yeah a bit worried, but I’m placing everything in God’s hands. The thing with endometriosis is that you can never be complacent, even in the absence of pain, one has to continuously see a doctor and a regular check-up/diagnostic test is crucial. There’s no other way to monitor our condition but through periodical ultrasound.
I always feel the need to reach out to my fellow 176 million endo-sisters worldwide through writing and sharing my journey. Hope is definitely a powerful driving force that renders us strength and courage especially in this trying times.
Tried some supplements to alleviate its symptoms and help my body counteract the side-effects of taking various pharmaceutically made hormones. Sharing in the post herbal supplements for Endometriosis.
This blog aims to help endo-sufferers find hope, ease symptoms, prevent avoidable complications and to spread awareness and understanding of their families and friends.
I do not know how to begin my next personal entry. I’m pretty sure others would be eager to learn that my condition became worse. While a few close family and friends are immensely concern and worried.
I believe there’s a power to every story.
Not just for endo-sufferers like me, but for everyone…
For the last 7 years, I have lived with endometriosis, talked about it in previous posts;
Recently, I have been getting sicker. Been bleeding for more than a month now. And so I decided to see my trusted doctors, one happens to be a good friend of mine.
I’ve missed them, it’s been a long time since my last check-up. They’re genuinely compassionate, I can feel it. And they talk to me straight, only mere facts, without any sugar-coating.
My years with endometriosis is exhausting, there are times I refused to visit a local specialist because I know she’d remind me the same dismal news. It’s also tiring to always explain my condition, the more if inquisitor is clueless about this “incurable” disease. And to my fellow endo-sufferers, surely you can relate – people often think we make all these up or it’s all in our heads. Sadly, it’s pain who is talking. I tried to mask the affliction by managing my weight. Taking different medicines, oral therapy (hormones), supplements and herbal, to the point of repugnance is a daily norm.
First, I had an ultrasound followed by SISH (Saline Infusion Sonohysterography). Both are endometrial procedures to diagnose and identify the cause of this haemorrhage. After a thorough and cautious examination, they found a polyp & among other complications of endometriosis. Something unfamiliar to me, seeing it from the monitor I thought it was a fetus (I wish!) but oh no, it was a tubulocystic structure called hydrosalpinx.
it was a tubulocystic structure called hydrosalpinx.
Hypdrosalpinx – is a type of fallopian tube blockage. Read it here hydrosalpinx, causes and treatment. Distended in my abdomen, it appeared sausage like and a probable complication of endometriosis. Along with other pelvic adhesions, I was told that conceiving is now non-viable. It is easy to succumb and dwell on despair and sadness when one is overwhelmed with trials. And so I try to see something good, something to be thankful for in my everyday life. Waking up pain-free is what I cherish the most, being able to take no medication for a day is next.
We, together with my loving family and trusted doctors, deal with it one at a time. And it helps to be hopeful, hope gives us incredible strength.
hope gives us incredible strength.
My endo-sisters our journey through pain is much sweeter if we hold on to our family, to our loved ones, if we face it together. Facing it alone will just makes things worse and heavier. I thank God for I found a local community that I can relate with, and to be part of an international organization that’s united in one goal – to end endo.
God decided to do certain things in a certain way,
and why He did this is a secret known only to Him.
– Paulo Coelho
Pre – operation, I would have diarrhea and extreme lower back pain every menstrual period. The reason for this was explained later on by the laparoscopy procedure done to me. They found out that my posterior uterus adhered to the intestines already. And you could imagine the monthly agony I went through, I felt like dying every time. Area/s affected by endometriosis will most likely manifest symptoms of pain & discomfort yet some cases I read are asymptomatic (oh lucky them!)
To simplify its definition – Our womb (uterus) is where a baby grows when pregnant. Endometriosis is a disease in which the kind of tissue that grows inside the uterus grows outside the uterus.
Our womb (uterus) is where a baby grows when pregnant.
Endometriosis is a disease in which the kind of tissue that grows inside the uterus grows outside the uterus.
The procedure provided a great relief but it was short-lived. For new findings of cysts, adenomyosis and enlargement of uterus were seen recently as bleeding becomes heavy again. I regret relying on the temporary relief of surgery. I thought that was it and oblivious of what could have been a chance for me to be healthy-er.
Many studies showed that unhealthy diet, chemicals and environmental pollution, lifestyle and mostly stress, compounded over time are the culprits behind our afflictions. Though there is no clear explanation for the cause of this illness, I believe that I’m guilty on the “work-related” stress, environmental factors and unhealthy eating which brought me to this present state of health.
it’s not too late…
About a month ago, I become a member of Endometriosis Philippines Group, and it’s heartwarming to belong to a group that knows exactly what you’re going through, to have an advocacy and bring awareness to this disease.
Next post I will share the medicines, supplements, homeopathic medicines and vitamins I took or currently taking, which provided relief or just a waste of money. Of course, my body’s reaction can be entirely different from yours.
herbal supplements for Endometriosis
Still hoping to help other Endo-sufferers.
Thanks for your time.
My Endometriosis Story: Journey through Pain
What is Endometriosis, signs and symptoms (UCLA-ObGyn)
Endometriosis- Symptoms and Causes by Mayo Clinic
16 Endometriosis Symptoms www.medicinenet.com
Our group – Endometriosis Philippines Discussion Group