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In Conversation: Adenomyosis and Endometriosis in Focus

Im Gespräch 14.03.24 7 min. read

To mark Endometriosis and Adenomyosis Awareness Month in March and April, we at This Place want to gain a deeper understanding of these conditions and shed light on the personal experiences of those affected. 

To do this, we spoke to Steffi, who is living with adenomyosis herself. In conversation with This Place, she shares insights into her diagnosis experience, her personal challenges dealing with associated stigma and tips and strategies for coping with the condition. 

We hope that her openness will not only help to raise awareness of endometriosis and adenomyosis, but also offer encouragement and support to other affected individuals.

Overview: What are adenomyosis and endometriosis?

If you're wondering what endometriosis and adenomyosis actually are, we'd like to give you a brief overview before the interview.

Endometriosis and adenomyosis are two often mixed-up diseases that affect millions of individuals worldwide. For a long time, adenomyosis was considered a subtype of endometriosis; today we know that the conditions differ in their appearance and symptoms.

Both diseases affect the endometrium - the mucous membrane that lines the inside of the womb (the uterus).

In endometriosis, this tissue occurs outside the uterus - for example in the ovaries, fallopian tubes, abdomen or other organs in the pelvic area.

Adenomyosis, on the other hand, is when this tissue grows into the muscle layer of the uterus (the so-called myometrium) instead of growing outside of it. This often leads to a thickening of the uterine wall.

In both cases, the abnormal growth sites of the tissue cause inflammation, pain and other symptoms that can severely affect the lives of those affected.

In conversation with Steffi: Her experiences with adenomyosis

Getting diagnosed with adenomyosis uteri

Adenomyosis is often referred to as a "silent disease", as many of the women affected wait years to receive a diagnosis. Can you tell us about your own experiences with it? What symptoms led you to seek medical help and how was the diagnosis made? 

I was always in extreme pain during my period. If the pain had been somewhat bearable for me, it wouldn't have worried me too much. However, in addition to massive, wave-like cramps in my abdomen, I always have nausea, vomiting and fainting spells. Due to the symptoms, I can no longer stay on my feet and spend most of the first two days in bed. My gynecologist said that as a "chronically ill" patient (I also have migraines, irritable bowel syndrome and rheumatism), I would notice the presence of pain much sooner anyway. I didn't find this statement particularly friendly, to be honest.

During the ultrasound examination, however, my doctor noticed that my uterine wall looked "strange" and was very thickened. I then asked her to give me a referral to a clinic that offers a consultation specifically for endometriosis.

After about 11 months, I had my appointment for the endometriosis consultation. Here, my gynecologist's suspicions were confirmed. Due to chronic pelvic pain, pain during sex and my bowel complaints, I probably suffer from endometriosis as well as adenomyosis.

However, as no organ is currently at risk and the operation is not completely harmless, I decided against a laparoscopy. In contrast to endometriosis, a "trained eye" can usually detect adenomyosis by means of an ultrasound scan.

Stigmata in uterine diseases

Unfortunately, topics such as menstruation and associated symptoms are often still associated with stigma. Have you had any experiences yourself that you would like to share with our readers? 

I have had this experience many times. It is often only those people who are either affected themselves or know someone close to them who suffers from adenomyosis or endometriosis who understand.

Many keep quiet about their symptoms or illness, as more "intimate" organs are affected and "uterine lining", "reproductive organs", "bladder pressure" or "pain during intercourse" are not terms that are overused in everyday language. So I can understand if you are not very open about this, as the people around you may react strangely.

There will certainly be very few mothers who disclose detailed information about their birth and the postpartum period, as it is also a rather shameful, unpleasant and intimate topic - comparable to the topics of adenomyosis and endometriosis.

Support for affected persons

How can people who are not affected by adenomyosis or endometriosis help to raise awareness of these issues and offer support to those affected? 

I would like to see people who are not affected themselves, but who learn about the disease (e.g. from someone who is affected or because of a documentary, report or similar), exchange information with others, or at least keep the topic in mind. The more people know about it, the better.

Many people are completely unaware of the terms endometriosis and adenomyosis. This is a great pity, but also not surprising. For example, has anyone ever seen information about this in the waiting room at the gynecologist's office? I often find advice on pregnancy, vaccinations and IGEL services, but I have never seen anything about endometriosis or adenomyosis. Politicians and doctors also often treat these diseases with extreme neglect. Yet research and better treatment options and therapeutic approaches are so important.

Those affected should also be treated with more empathy. The pain is not imaginary and severely restricts everyday life.

Listening; being understanding if you have to cancel an appointment at short notice, have to call in sick again and avoiding phrases like "Maybe it's psychological", "Why don't you try...." or "I know a naturopath..." - These are a few points that I would like to pass on to someone who is not affected by this as suggestions.

Self-care in the context of adenomyosis and endometriosis

Has your view of holistic health changed as a result of your experience with adenomyosis? To what extent does self-care play a role?

Due to my other chronic illnesses, I have already "turned my life upside down". This means that I have changed my diet, listen to myself and my body more and no longer rely so much on other people's opinions. I make time for things that give me strength and have weeded out my circle of friends and acquaintances. I don't want to spend time with people who aren't good for me – that sounds a bit radical, but it helps. I only want to be surrounded by people who understand me and give me strength.


Wishes for the future

How would you imagine an ideal environment for affected women, both personally and professionally? What changes would you like to see in the future?

As I belong to a self-help group, I can definitely say that almost all those affected would like to see more understanding. Both personally and professionally.

Some women have already lost their partner because the condition often restricts their sex life or makes it impossible for a long time. Some men cannot cope with this, which is a great pity. An understanding partner who does not put pressure on the affected woman, but instead provides support, security and time, would therefore be desirable.

Many of those affected would also like more support from friends and family. Especially if you have to cancel an appointment or similar at short notice due to symptoms.

It is just as difficult in everyday professional life. 

Absences are unavoidable in most cases. A highly flexible workplace would therefore be ideal, but these are rare and of course not feasible in some industries. Here too, however, more understanding would be helpful. There is only one woman in our self-help group whose employer knows about her illness. Most supervisors and bosses are male. For them, the topic is even more unknown than for women and they are too afraid to talk about it.

We would therefore like to see more acceptance and understanding in society in general. Diseases of the uterus are still in the shadows. The more that becomes known about this field, the more tolerance and openness will presumably follow.

Concluding advice for those affected

Finally, what advice or message would you like to pass on to other women with adenomyosis or endometriosis?

Question more what is offered to you. I personally don't use social media, but most people in the self-help group do. Suggestions and tips are always given here, which unfortunately are often accepted without being questioned or even taken as an incentive to buy.

Decide for yourself which treatment you want to tackle and don't allow yourself to be pressured into anything. It is your body, your health and your decision. If the situation is unclear, it may help to get a second opinion from another doctor.

Question your lifestyle in general. Are there people or habits in your immediate environment that are not good for you? Do you always want to please everyone or do you also think about yourself? Is something weighing you down? Do you have enough time for yourself?

From my own experience and also from the self-help group, I have noticed that many of those affected are very ambitious, sometimes also very strict with themselves and far too often adapt their lives to social expectations.

I myself, for example, am highly sensitive and had to learn to stand up for my boundaries to others. Since I've come to terms with this and adjusted my life accordingly as far as possible, I feel much better mentally - above all, I no longer have this constant stress.

It's not easy, because lots of people immediately label you and make comments like "You might be exaggerating a bit", "Have you ever thought about the fact that it's all psychosomatic?" or " What, you don't have a boyfriend?", "Don't you want to have children?", "Who's going to look after you in your old age?". Behind my back I also hear remarks like "She's very sensitive" or "She always cancels events".

What I want to say is that the people who love and care for you will accept you just the way you are. I would like to encourage you to think about whether you are currently happy with your life and your surroundings or whether there are things that cause unnecessary stress.

When you are chronically ill, it is extremely important to have "sources of strength" that you can fall back on in particularly difficult situations. This could be your favorite music, for example, which you can listen to while relaxing on the sofa or in bed. Maybe it's good for one person to do handicrafts or paint; for another, spending time with friends gives them strength.

Of course, these sources of strength cannot cure the illness, but it is important to look after yourself and say "no" if necessary. Another helpful piece of advice could be to join a self-help group. These regular meetings to exchange ideas with like-minded people, especially online, can provide valuable support.