Living with endometriosis. Interview with Alicia Veersma Barredo

Alicia Veersma Barredo (34) from Germany went vegetarian as an 8 year old, and then vegan in her twenties. In this interview, she talks about living with endometriosis, uterine adenomyosis and pelvic nerve damage, and how she not only had and has to deal with chronic pain and physical symptoms, but also had to fight to be taken seriously by the medical profession. She also touches upon the dilemma of having to take medication as a chronically ill vegan, and gives some points as to how the vegan community can become more inclusive.

Hello Alicia, tell us who you are? What’s your background? Where do you live?

My name is Alicia Veersma Barredo. I am 34 years old, half Dutch and half Spanish but I grew up in Germany. I have a Bachelor in English and Spanish philology and a Master in postcolonial studies and currently work as an administrator.

You told me you became vegetarian at the age of 8, and then vegan at the age of 26. What inspired you to take those steps? And how did your family and surroundings react?

There were various things that led me to become a vegetarian, I think. I always liked animals and grew up with my parents adopting and rescuing dogs, cats and chickens. The first important step was meeting a friend of my parents who was vegetarian. This opened my eyes to the possibility of not eating meat. Shortly after that, there was a big scandal about mistreated chickens in a facility not too far from where we lived. And I think what finally drove it all home was eating some meat at a barbecue and chewing on something weird and getting told that it was probably just a piece of sinew.
I don’t know why but that made me realize that I was chewing on a piece of flesh that used to belong to a living animal.

My parents and sister reacted pretty well considering my age and how uncommon vegetarians still were where we lived. However, my family in Spain was convinced I would die and were appealing to my mother to forbid it. Thankfully she supported me instead.

I started in 2011 with my masters program and learning so much more about colonialism and different forms of oppression just made me question my own beliefs and actions. Reading all the accounts of people in the past justifying why they were oppressing others made me doubt my former assumption that certain kinds of animal usage are acceptable as long as the animals are treated well.

The change to veganism was maybe a bit rough for my surroundings because vegetarianism just had become easier and more mainstream a short while ago and now I was starting something more complicated. However, they took it pretty well and supported me a lot.

New people I meet are usually a bit shocked because they have a certain image of vegans that I apparently do not meet, but they usually get used to it pretty fast.

Reading all the accounts of people in the past justifying why they were oppressing others made me doubt my former assumption that certain kinds of animal usage are acceptable as long as the animals are treated well.

Can you tell some more about your illness and how it influences your life? What impact does it have on your day-to-day living?

I suffer from endometriosis, uterine adenomyosis (at least the adenomyosis is highly suspected but almost impossible to prove without hysterectomy) and nerve lesion of the sacral plexus on both sides (nerve network located in the pelvis). Endometriosis is a condition in which cells similar to those in the endometrium, the layer of tissue that normally covers the inside of the uterus, grow outside the uterus. This causes adhesion and cicatrisation which can lead to a wide range of problems. Adenomyosis is similar but inside the uterine wall. Endometriosis can often be removed surgically but this is mostly not possible with ademomyosis.

From 2011 to 2016, I spoke with various doctors about my increasing pain, tiredness and difficult menstruation but they didn’t take me seriously.
At the beginning of 2017 I couldn’t stand it anymore. The pain attacks at night now sometimes occurred four times a week. My period became a time to be dreaded because of the pain and tiredness as well as the sheer amount of blood. I took all of my courage and went to another gynaecologist with a very good reputation. He told me directly it is probably endometriosis and adenomyosis and prescribed me a laparoscopy and his suspicion was confirmed (although adenomyosis can only be diagnosed to 100% with a hysterectomy).

I was supposed to take hormones in order to ‘dry the endometriosis out’. I did as I was told but the problems persisted and on top of that I also had to endure the side effects of the hormones. After ten months I stopped taking them.

As the pain became even worse than before and my legs started to hurt a lot and not work properly. I tried to get help but one specialist after another told me there was nothing they could do. They told me that it was probably the adenomyosis and that the only cure for that would be hysterectomy, which they wouldn’t do that as I might change my mind about having children. They also told me I was exaggerating and some suggested to see a therapist.

After all kind of tests to make sure it wasn’t something else and after two more years of ever increasing pain and issues, I convinced a specialist that I just couldn’t endure it any longer. He conducted another laparoscopy where they removed some uterine myoma and put a contraceptive coil. As they didn’t find new endometriosis they considered me cured and made it clear that they thought I was exaggerating.

The pain became worse again, my legs started to become a real problem and climbing stairs became a difficult task. I started to get pain treatment. As everybody assumed it must be the adenomyosis I started taking muscle relaxants, but those didn’t help and at night I woke up because of the pain and because the medication made me vomit.

I read in an endometriosis group about women having similar problems and that there is a pretty new field called neuropelveology, which treats nerve damage in the pelvic region. I was lucky because for years there was only one doctor in Switzerland treating this (and you had to fight with your health insurance to have it covered) but recently a specialist had come back from Norway to work in Germany and the hospital wasn’t even that far from where I live.

Afraid that he also wouldn’t take me seriously (especially since my last surgery was only some months ago) I wrote him an email. He told me to go to his clinic and have it checked before my nerves would be damaged beyond repair. He did some tests none of the other doctors had done before and told me that he thought it very likely that my nerves are somehow damaged.

In February 2020 I had my third laparoscopy. When he told me he had found adhesion and scar tissue compressing the sacral plexus, pudendus and sciatic nerve I started crying because finally a doctor found something and believed me.

Since then, I am taking medication against nerve pain. Unfortunately these meds caused anxiety. I tried other medication but they didn’t help against the pain (although the anxiety went away). Now I am back to taking the first pills together with medication against anxiety. Since some days I also started with other pain medication as I am still in a lot of pain and my doctor is afraid that it might become chronic. They all cause tiredness, dizziness, exhaustion and nausea, but with them I can get through the day.

My doctor is confident that I might some day be ‘cured’ of the nerve pain although a hysterectomy might still become necessary and the endometriosis can always come back or appear somewhere else in my body.

Generally speaking all of this made me lose a lot of trust in doctors and in our health system. I became aware of how different I, as a woman (especially when I was younger) with a typical women health issue, was treated and how fast the system is willing to drop you.

At times I really started to mistrust my own perception of my body and pain and I struggled with accepting my illness and my need to rest and to take pain meds because I was told for years that I am exaggerating and only have to pull through.

Apart from that, there is of course also the time I need to invest in ongoing appointments, the ongoing pain and the side effects of the pain medication. I am often very tired and it is sometimes extremely difficult to concentrate. I could increase my doses but it would make me too tired and clumsy.

all of this made me lose a lot of trust in doctors and in our health system. I became aware of how different I, as a woman (especially when I was younger) with a typical women health issue, was treated and how fast the system is willing to drop you.

You told me that it took a long time before you got a proper diagnosis, and several doctors did not take you pain or symptoms seriously. There’s several research documenting sexism in the medical profession. Do you feel like they would have treated you – as a patient – differently if you were a man?

Absolutely! I do feel that I as a patient was not taken as seriously as a man would probably have been. Doctors did not believe that I don’t want children and one doctor even asked if it would be ok for my partner to not have children. Some doctors believed me about not wanting children but considered infertility the only real problem with endometriosis and the only thing that really warrants treatment. I often felt reduced to my birthing capacity and not seen as a real, suffering person.

Additionally I feel that endometriosis and generally pelvic pain in women is not taken seriously. We are not supposed to talk about menstruation and any kind of problems relating to it. We are told it is normal to feel pain during menstruation and doctors struggle to consider problems outside of gynaecology.
The lack of funds and lack of research in the field also suggests that there is not much interest in an issue that mainly affects women.
Endometriosis can affect man but it is extremely rare as far as I know. Transgender men can be affected and probably have huge problems due to the special nature of the disease.

We are told it is normal to feel pain during menstruation and doctors struggle to consider problems outside of gynaecology.

You describe yourself as an intersectional vegan on you Instagram page. What do you mean with that?

I belief that all forms of oppression are bad and that they are all interconnected and support each other. In order to fight speciesism effectively, we need to fight all other forms of oppression as well.

I also think that the vegan movement is not giving enough attention to other forms of oppression and how these might influence vegans of marginalized groups as well as running the risk of being infiltrated by for example racists and sexists.

I often read the argument that everybody who wants to fight for animal rights should be welcomed in the vegan community, but I think this single issue position is dangerous and simplistic. It does not consider how difficult and dangerous it would for example be for people of colour to meet with fascists at vegan events.

There is also the danger of the sexist, fascists, ableist etc. messages spreading further in the vegan movement and of course also the danger of the vegan movement becoming associated with those kind of views.

You also mention ‘guerrillacrochet’ on your IG? What does that stand for?

That is only a joke. My sister taught me crochet but while she is very good it and works with a lot of detail I only know how to make squares and circles – but I like doing it, so I do a lot of weird, colourful things with my squares and circles. I also used to do crochet in class, in the bus and wherever I felt like it. So I do crochet in a way you are not supposed to do it and at places where I am not supposed to do it.

Are there any forms of animal rights activism or for other causes that you are involved with?

Not really. I take care of injured hedgehogs and used to do some translations.
I would love to get involved in something but haven’t found the energy and/or the right thing for me. For now, I am trying to learn by reading a lot-specially about the connections between different forms of oppression, postcolonialism and literature and culture. I hope I will someday be able to contribute more!

Have you faced discrimination based on your chronic illness? On being a woman?

I think I only have faced discrimination because of my illness in the sense described above (that doctors don’t take it seriously), but thankfully not by friends or family or at my workplace. I have not been taken seriously because I don’t look ill though.

I think most women have faced discrimination although we often don’t fully realise it.

I remember a teacher telling us that we girls don’t need to try too hard because we are not made for math. Comments about my body by grown men when I was only 13 or 14 years old and of course groping on parties and a lot paternalism throughout my life.

Some vegans like to portray plant-based eating as a magical cure all for all diseases. What do you think about that?

Hearing and reading those kind of statements always causes multiple thoughts and reactions for me.
You can be vegan and eat very unhealthy things and have a very unhealthy lifestyle. Moreover, even the most healthy alimentation and lifestyle don’t automatically protect you against all kind of illnesses.

If you confront those people with the fact that vegan people often are ill you pretty much get reactions like ‘well you have to eat healthy stuff, ‘you have to be a raw vegan’, ‘ you have to train’. These reactions basically shift the blame to the ill person, so what I end up hearing is that I am ill because I don’t try hard enough or because I prefer to remain ill.

I think those kind of statements are damaging in various ways :

1. It is damaging for the vegan movement as we are perceived to make false promises/ to be unscientific.
2. We run the risk of alienating ill people.
3. We run the risk to ‘lose’ the ethical foundations by focusing too much on the health benefits of being vegan

These reactions basically shift the blame to the ill person, so what I end up hearing is that I am ill because I don’t try hard enough or because I prefer to remain ill.

As a vegan, how do you feel about taking medication?

I definitely don’t like it very much! I am aware that the medication I am taking was tested on animals and even contains partly animal products but the simple truth is that I would suffer a lot without them and I would run the risk of developing chronic pain which is difficult to treat.

I follow the definition of veganism ‘as far as possible and practicable’ and try to remind myself that I do what I can and that instead of shaming people who need medication we should try to work on making more medication vegan and support alternative testing methods.

Do you think there’s ableism in the animal rights and vegan community? Do you have some examples? Can you give some suggestions as to how the vegan and animal rights movement can become more inclusive and accessible?

I do certainly think there is ableism. One aspect would be the health shaming mentioned above – telling chronically ill and disabled people that they deserve to be ill for practicing veganism wrong. Another aspect is shaming people for needing medication and treatments that are not vegan

Furthermore I fear that at events there is often too little concern for disabled people because even vegans themselves have a certain idea about how vegans are supposed to be and disabled/chronically ill or old people therefore don’t even enter their consideration when organising events and protests.

The recent Corona crisis also showed me that a lot of vegans have very little regard for people with higher risk of suffering an infection and are not really willing to limit themselves in any way.

I think the only way the vegan movement can become more inclusive and accessible is by listening. There are always aspects of oppression and discrimination that we are not aware of and we should accept that and try to give others the opportunity to be heard and learn from them as much as possible.

Is there anything else that you would like to share here?

I would like to encourage people who suffer (or suspect they might suffer) endometriosis /adenomyosis to not give up and keep searching for help.

I would like to recommend:

• Dr. Gabriel Mitroi’s facebook page and his book for general information about endometriosis and adenomyosis.
• Prof. Marc Possover website for information on neuropelvieology
• My doctor’s name in Germany is Dr. Andreas Putz, he works at the ‘Dietrich-Bohnhoeffer-Klinikum’ in Neubrandenburg

Alicia Veersma Barredo – Interview Crip HumAnimal, by Geertrui Cazaux

Instagram: https://www.instagram.com/aliceinveganwonderland/

– Interviews Crip HumAnimal – I particularly welcome stories of disabled LGBTQIA+ vegans, BIPOC vegans, vegan women, or other oppressed and marginalised groups, to highlight their specific experiences and the interconnections of oppressions –