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  • Writer's picturehilde

Living with adenomyosis (a variant of endometriosis)

Updated: Feb 2

March is endometriosis awareness month. Endometriosis is a full body disease that is estimated to affect 10-15% of women, yet not many people know about it, and the impact on those affected is significant. So here is my story. Be aware that this disease affects people (yes even some men) in a 100 different ways: from some ‘only’ suffering from heavy painful menstruation, to others having daily pain and not being able to work (fully), to those not realising they have it until they find out they can’t get pregnant.


What is it?

You could google this, but since there is a lot of half truths out there, I prefer to cite a trustworthy resource. The below text I copied and translated from Endspot_nl, a Dutch IG page which is a great source for information and awareness around endometriosis.

→ Endometriosis is a chronic disease in which hormone-sensitive tissue can be found in all kinds of places in the body where it does not belong.


→ Often around and in organs; such as the ovaries, uterus, bladder, intestines and kidneys. But also in other places such as; the lungs, diaphragm, chest cavity, liver and nerves. So it is not necessarily a gynaecological disorder.


→ This endometriosis tissue responds to hormone changes and secretes substances that irritate surrounding tissues. This can cause the surrounding tissue to bleed; but endometriosis itself does not bleed.


→ The immune system then reacts to this by releasing inflammatory proteins that rush to the site of the disease and cause swelling and inflammation.

→ This (often years-long) process causes: serious adhesions of the organs, cysts with blood / lumps, severe (nerve) pain, inflammation, damage / impaired functioning or complete failure of organs and sometimes also infertility. This also has a huge impact mentally.


→ With adenomyosis, the variant I have, endometrial tissue grows into the uterus muscle, damaging the uterine wall. It is similar to endometriosis, except with endometriosis the tissue grows outside of the uterus. Severe cramps, heavy bleeding, pelvic pain, bloating and infertility are the main symptoms.


How did I find out? A diagnosis that took almost 20 years!

With 14 years I got my first menstruation, and it was straight away extremely painful. The heavy bleed together with the uterus cramps were so severe that I could barely walk, sit or lay down, got pale like a ghost, and would almost faint and throw up. I was like a labouring woman screaming and panting through the pain for about 12 hours straight. I somehow survived this for 2 years without taking any medication.


As so many women suffering from menstrual complaints, when I visited my general practitioner, he immediately prescribed hormonal contraception. I was 16 years old. There was no further research done, or given any explanation about the side effects. The contraception did suppress my symptoms, and it gave some side effects. For one, I gained weight. And despite many women experiencing weight gain, several doctors at the time told me, it is not an official side effect of hormonal contraception [I recently saw it's included in the leaflet]. Another side effect was that I felt emotionally more flat, not like myself and not in touch with my nature. This totally makes sense, as hormonal contraception shuts women completely off from their natural cycle. That your ovulation actually has many health benefits, and that synthetic hormones deprive you from essential vitamines and minerals, is not a topic of discussion when advising women to take hormones. In fact, none of the side effects were discussed, I just got the contraception and "problem solved".


About 7 years later, I decided to quit, went back on it as I was scared to deal with the consequences while going on a longer trip, and quit for good when I was about 26 years old. A completely fucked up hormonal state was the resolve of taking all those years hormones. My body finding its way back to its natural state also meant loosing weight again. Straight away the monthly pain and fatigue came back with my menstrual cycle. With pain killers I could withstand. Regaining the beautiful flow and wisdom of the feminine cycle, discovering a more 'wild, changing and real' side of myself, was so liberating. That it has been worth the monthly misery.


With aging, my symptoms appear to be worsening, and I have been doing more research on the condition. Several years ago, I visited my GP once again to request a referral to an expert clinic on endometriosis. This is crucial because gynaecologists who are not trained on the disease, often cannot identify it. Generally, endometriosis is not detectable through ultrasound or MRI; a laparoscopy (for which one needs anaesthesia) is necessary for a definitive diagnosis. In my case, the ultrasound did reveal tissue that did not belong in the uterine muscle, indicating adenomyosis. Diagnosed almost 20 years after my first complaints. Let that sink in for a second! I am looking back at all those years where people told me that I'm probably exaggerating and that women just have these problems sometimes!

After the diagnosis, the female gynaecologist advised in a rushed conversation: go back on hormonal contraception, try a specific diet, and freeze your eggs in case you want kids. I experimented with diets, and sought help in the alternative circuit, with slight improvements as a result.


Your general practitioner probably doesn't know much about the disease

The lack of knowledge amongst doctors is problematic. I have asked several times before for a referral, but the male GP said that if painkillers help, I cannot have adenomyosis. There is also the common myth that the disease will be gone after menopausal (can be, but doesn’t have to), will not progress when on hormonal contraception (it can suppress, but it's not always the case), or that it’s only a menstruation disease (no, the hormone-sensitive tissue can grow all throughout the body, giving many different complaints not related to menstruation). In recent years media coverage and research funding have increased, but like with most subjects related to women's health, there is still a long way to go.


How does it impact my life?

Lack of energy

Two of the most precious resources we have as humans are our time and energy, as they are finite. By far the worst impact adenomysosis has on my life, is that I regularly feel depleted of energy. Especially the days before, during and after my period, but also days ‘randomly’ during the month. Days where I cannot get to anything, and feel stuck on the couch. Of course I wonder if there are other causes for this, but that’s hard to figure out. I also regularly deal with sleep deprivation, which is known to be a symptom of endometriosis, but could also be part of my genes, as it runs in the family. Lack of energy means you cannot only do less in a day, but it also affects your mental state.


Mental impact

During the days leading up to my moon, I often feel extremely down (I think we could call this depressed). My life seems very challenging those days, and I cry a lot. Besides these hormonal mood swings, there is also the mental impact of living with the knowing that these extreme pains and depressed feelings come back every month, with no outlook for better days.


Pain and other symptoms

With heavy pain killers and a strict diet, I can keep the pain manageable, however my body is just not really well functioning at least a couple of days around my period. Besides uterus cramps, there is regular stomach issues, bloating, cravings, iron deficiency, difficulty regulating my temperature, exhaustion, hormonal acne, general malaise, etc. This is for a part resolvable with lifestyle adjustment, but these feel quite restrictive, and I find it very hard to adhere to them.


Social and personal impact

As a person who loves spontaneous travel and adventure, my current lifestyle is definitely not beneficial for my disease. What is helpful is: rest, routine and stress avoidance. Within the possibilities that I have and that I want to adjust to the disease, I do what I can, and at the same time, I also accept that my disease is more flared up due to my current lifestyle.


Then, there is the impact on my ‘career’ outlook and following certain passions. For example:

I wanted to be an adventurous travel guide at some point, but to guide 10 to 20 people day in day out where my full energy and enthusiasm is required, is practically impossible for me.

Office jobs are in that sense more suitable due to their seated and often more solitary nature. If I’d miss a day due to complaints, I could catch up in the evenings or on weekends.

Finally, the number of times I was in pain and exhaustion during an interview, a presentation, or a meeting and trying to hide it, and still deliver, that is tough. I’ve had to push through many times, and for sure have missed opportunities due to not fully being in my energy to show what I am capable of.


More expenses

The diet of organic foods in combination with expensive supplements adds up to my monthly bills. Besides all the visits to specialists, alternative doctors and health coaches. Also, many consumer goods consist of hormone disrupting chemicals, such as cleaning and beauty products. This is bad for everyone, but especially for those with an illness that gets triggered by hormonal changes. So for these type of products I choose organic, natural products, which means more expenses.


Judgement

This is a common experience for everyone suffering with chronic disease: lack of understanding for what I’m going through and sometimes judgement for the choices I make regarding my disease. Generally, people are opinionated on food and diets, despite lacking the knowhow of someones dietary choices. People quickly perceive it as difficult when you eat different than they do. A little more curiosity would come a long way. Having an illness, any severe illness I guess, brings about a certain loneliness. It is truly hard for people to grasp what you're going through.


Higher chance of infertility

For women suffering this disease, it’s more difficult to get pregnant, and they have a higher risk of infertility, miscarriage, complications, and early born children.

Did it bring anything positive to my life?

I believe there is often, no matter how small, something positive to be found in unpleasant circumstances (though sometimes it takes time for us to see it). My disease, which leaves me with a reduced amount of energy in the month, taught me a valuable lesson in prioritising what truly brings me joy. For me, perhaps more than for others, I had less energy left after a 40 hour work week. And having already one week a month where I feel down, makes any extra dissatisfaction in my life, quickly intolerable.

It perhaps helped me to make bold decisions to go for a life that truly nourishes me, and works with my cycle instead of against it. Because that’s the other beautiful aspect: I am so in touch with my natural cycle and what works for me and what doesn’t. Having this self awareness feels empowering and allows me to work with it.

Finally, hardship such as a chronic illness teaches resilience, and compassion with others who endure hardship.



In closing

If you’ve read all the way until here, thank you. Thank you for your time and attention. I hope this gave a better understanding of the disease, and perhaps also of me. For those that know me, but don’t know this part of me that well. Sharing more openly about this part of me feels liberating and strong to own this part too.


If you have any questions, feel free to ask!


I hope this story came across as informative and authentic and not as some self pity story. Yes it’s shit ánd I have tons in my life to be very thankful for. We all endure hardship in some way or another, it’s inevitable to being human. Let’s take those stories as a reminder to be compassionate, humble and kind where we can. Theres’s always more to people than meets the eye.


With love,

Hilde

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