Many if you might already know it, but some of you probably weren't aware. I have a chronic illness called Endometriosis.
I have been struggling with it since I was 13 years old, I'm 22 years old now and I'm still figuring out how to deal with it every day.
Endometriosis has ruined many good things in my life, but I don't want to be negative and I want to try to "make use" of it as best as I can! Having a chronic illness that isn't enough awareness about is difficult, but I do know how much others with Endometriosis suffer since I have it myself! That's why I want to make use of my experiences and raise some awareness and understanding about what endometriosis is and what people who suffer from it go through.
Maybe some of you will recognize yourself in my experiences, but weren't aware of Endometriosis being a thing. If that's the case then I'd advice you to go to the doctors and explain your symptoms, and that you think that you might have Endometriosis or something similar. It's better to be safe than to be sorry!

What is endometriosis?

Endometriosis is a disease of the female reproductive system. What happens is that tissue similar to the tissue that grows on the inside of your uterus grow outside of the uterus. This tissue spreads around the uterus and ovaries but sometimes it also spreads to other places in your body. If it spreads to other places then most of the time it spreads to your bowel or bladder. In rarer cases it spreads even further in your abdomen , and there are some women who have Endometriosis tissue on their lungs which results in them having a collapsed lung regularly. This however is very rare, and I'm very glad that it is!

Now you know what the tissue is but how does it cause pain? Endometriosis tissue is synced up with your menstrual cycle. When a women with Endometriosis has her period she has a very heavy flow and a lot of pain, but the Endometriosis tissue that's spread in her body and that got stuck on other organs also starts bleeding. This causes some internal bleedings but also extreme pain since the immune system will develop inflammatory proteins that rush towards the places of the Endometriosis tissue, and they cause inflammation and swelling.

This causes extreme pain and bleedings. When my Endometriosis was at it's worse I had a menstruation of 7-10 days. The first 3 days were the worst. I would scream out in pain, puke because of the pain, I had wicked diarrhea and passed out multiple times a day from all the pain, blood loss and not being able to eat or drink much. If I was home alone I laid helpless in my bed all day, and couldn't get drinks or medicine myself since I could barely walk. I only got up to rush to the toilet multiple times a day but even then I sometimes collapsed to the floor in the progress. My blood flow was so heavy that I bled through the biggest night pads (that usually can take a normal blood flow from a night so 6-8 hours) in less than half an hour.
This was the moment that I knew that something had to change! I had struggled with it ever since I was 13 year old and every month it gradually got worse until it was this bad, I was 19 years old at the time. The sad part is that the average woman with Endometriosis spends 6.7 years searching for help before they get the right diagnosis.

What are symptoms of Endometriosis?

I already explained many symptoms that you can have and things that I experience, but I'm going to list some more symptoms below.

Symptoms of Endometriosis

Infertility

Irregular menstrual cycle

Heavy flow during menstruation

Abnormal menstrual pain

Pain during the ovulation

Pain in the lower belly or back that sometimes radiates towards the legs

Abdominal Distention

Pain during sexual intercourse

Abnormal blood loss (vaginal, anal or urine)

Pain during defecating or urinating

(Chronic) fatigue

Insomnia

Premenstrual Syndrome (PMS)

Depression/irritability

Diarrhea

Nausea/vomiting

migraines

These are some of the most common symptoms but there are many more symptoms someone with Endometriosis can experience. I personally can relate to everything sadly enough. Most of the time people with Endometriosis experience their symptoms mainly during the time of their menstruation but Endometriosis can worsen over time which causes the symptoms to occur outside of the menstruation too. My Endometriosis is very extreme at the moment and my symptoms are there 24/7, sometimes worse than other times.
If you experience any off these symptoms yourself, don't be afraid to go to the doctor to get some help. Getting a checkup isn't scary or awkward at all and (good) doctors are very used to doing these type of checkups. If you suspect that you have Endometriosis you shouldn't wait too long with searching for help since Endometriosis can worsen over time.

Complications

There are many complications that one with Endometriosis can experience.

The most common complications are:

Internal scarring

Adhesions (tissue that connects organs to each other that aren't normally connected)

Pelvic cysts

Chocolate cysts in the ovaries (these are cysts filled with blood that apparently look like chocolate. This is extremely common, 17-44% of people who have endometriosis have these cysts)

Ruptured cysts

Bowel and ureter obstructions resulting from the pelvic adhesions, this may result in having to remove (a part) of the organs during an operation

Infertility

These are just some of the complications that someone with Endometriosis can experience. I personally have two chocolate cysts in my left ovary. They aren't extremely big but they do cause a lot of pain, and there are some suspicions that my left ovary has stopped functioning because of the cysts, but the doctors can't say that for certain yet.
I also have extreme continuous pain coming from my right ovary. They don't see any chocolate cysts in that ovary, but they find follicle cysts that eventually ruptures, and dissolves very often.
I still need to do a laparoscopy before they can see how bad my Endometriosis truly is, and I hope that I can get one in a few months so that I know what the damage is.

Now you might be wondering can Endometriosis be fatal?
Endometriosis isn't considered a fatal decease, but in rare cases the complications can still be life threatening or even fatal.
People who suffer from Endometriosis are also 3 times as likely to have heart problems compared to healthy people. They also have a higher risk of developing ovarian, brain and thyroid cancers.
I personally think that the death rate of people with Endometriosis is higher than that experts currently are aware off. Many people with Endometriosis never get the right diagnosis, and many doctors are still very undereducated about Endometriosis. That's why I think that in many cases when someone dies of Endometriosis the cause of death might be seen as one of the complications of Endometriosis instead of the decease itself. I'm not saying that this is the case since I'm no expert but I just think that this is a possibility.

Diagnosis and treatments

Diagnosis
How does someone with Endometriosis get diagnosed? Like I said before getting diagnosed with Endometriosis often takes many years due to doctors not being educated enough on the subject.
The first step that doctors usually take is doing a vaginal ultrasound. This is a very safe and accessible way of getting diagnosed. Doctors search for chocolate cysts in the ovaries. These cysts are only present in someone with Endometriosis, so if they find them it's safe to say that the person who has them has Endometriosis. A downside of the vaginal ultrasound is that Endometriosis tissue can't be seen. Not all people with Endometriosis have these cysts, so if the doctor decides that this is the only examination that they will do then there is a big chance that the person in question still doesn't get diagnosed.
A much more accurate way of getting a diagnosis is getting an MRI. This isn't invasive, but the costs are high, and there is limited availability in some countries. The results of the MRI give a much clearer view of the cysts, and some tissue might also be seen on the scans. However most of the endometriosis tissue is extremely small, and can't always be seen on the MRI. This means that even an MRI scan can't tell you if a person doesn't have Endometriosis or how severe it is.
The most accurate way of getting a diagnosis is a laparoscopy. This is a surgical procedure in which they look inside the abdominal cavity with a camera. The surgery should be executed by a specialist since Endometriosis can be miniscule and comes in many different colors. It can be difficult to recognize during a Laparoscopy for a normal surgeon. The laparoscopy still can't see all kinds of Endometriosis since it doesn't show the umbilicus, hernia sacs, abdominal wall, lungs or kidneys. Surgical diagnosis also allows for surgical treatment of Endometriosis at the same time.

I personally have only be examined by vaginal ultrasound and MRI. My previous gynecologist didn't want to perform surgery because of the risks, and because of me being young. We weren't getting further with the treatment, and one of the only things we hadn't tried yet was surgical treatment. I decided to go to another specialist who's more experienced, because my Endometriosis keeps getting worse. I have my first appointment with him in December and I'm hoping that I will finally be able to schedule a surgery.

Treatment
There currently isn't a cure for Endometriosis. The most common treatment is symptom relief by pain killers and hormonal medicines like birth control. Painkillers that are often prescribed are NSAIDs like Ibuprofen and Naproxen. If that doesn't work stronger painkillers like Tramadol may be prescribed but the addiction rates of Tramadol are very high so it should be prescribed with caution.
Many painkillers have long term side effects which doesn't make it a good long term solution.
Hormonal medicines like birth control and can slow the Endometriosis down from getting worse, and can reduce the menstrual pain. These medicines aren't cures and the Endometriosis will still be present even though it may give relief. There are some other hormonal medicines like Progestogens and GnRH's, but I must admit that medicines aren't my strongest suit. I'm not very familiar with these medicines, but these also only treat the symptoms of Endometriosis and aren't a cure.
They can also treat the Endometriosis during the Laparoscopy. Many specialists think that excision is ideal way of treating Endometriosis surgically. During the Excision they cut away Endometriosis tissue without damaging the surrounding tissue. This often gives pain relief but also isn't a cure. In many cases the Endometriosis tissue recurs. 30% of people who get excision surgery have pain symptoms again after 2 years, and almost 70% of the people needed a second surgery in less than 7 years away from the first. The surgery also comes with a risk of complications.

I'm currently taking Tramadol against for my pain, but my pain is so severe that the Tramadol only lessens it a bit instead of completely freeing me from the pain. I also have an IUD. The IUD helps a lot with relieving my symptoms, but my Endometriosis is still worsening. That's why I want to have the surgery so badly. The surgery will come with some risks, but I'm willing to take those, because that chance to at least be relieved from the pain for a few years is worth it for me.





My goal with this blog post is making people aware of Endometriosis but also making people aware that there currently isn't a cure or effective treatment method yet even though this disease takes a huge impact on someone's quality of life. Endometriosis was first discovered in 1860 so it isn't a new disease at all. Many generations of doctors and scientists have lived but there still isn't enough research, awareness and treatment methods for Endometriosis. I think that that is absurd, especially since it impacts the life of so many women, and even men (who probably will never get diagnosed since there is barely any research about endometriosis in men)!

I hope that this blog post was very informative. In the future I'm going to talk more about my experiences with Endometriosis, and the struggles that I experience. I want to be very honest about the things that I experience and that means that the posts in this series might not always very cheerful. My overall goal is to inspire people with the things that I write and do, but in this case I think it's more important to raise awareness and I think that being open about my experience can help a lot by achieving this (even if it reaches only a few people). I'm not sharing this to gain sympathy or attention, I'm sharing this to help others who are experiencing the same thing.