By: Val Sátiro Oliveira CEO and Founder, Interação Saúde Mulher
Imagine having to stimulate menopause from the age of 27? Still having to face, the social pressure for being prematurely infertile? Not being understood, neither by your hitherto "partner", nor by family members, let alone friends? In an intense search for support, and feeling depressed, for years of treatment with high-risk surgical sequences, GNrh analogues (chemotherapy to stimulate chemical menopause), extremely invasive tests, and trying to play strong, because her career should be on the rise, and having a disease that not even the doctors understand? From essentialist gender norms that put disproportionate pressure on women and people with feminine presentations to have children, to conventional standards of beauty, there are many external forces that make us deep endometriosis patients feel insecure as our bodies suffer the side effects of drugs, treatments, surgeries, and constant stress....
As a woman, you already feel vulnerable because your reproductive system is under attack, so you no longer feel like a whole woman. You no longer feel beautiful and attractive, and then with the side effects of the strong medications on top of the scars from the surgeries, there is fluid retention, "swelling", and this just made me feel more embarrassed and without self-esteem...
This is one more of my brief reports: I am a woman who before the age of 30 needed to block my menstrual cycle, to try to save my life, my fertility, my organs, but at the age of 40, I had the worst of feelings, which were similar to a total defeat for a woman, when I found out that I could not have children, a career without focus, and having to leave a marriage of years, in litigation, as if I were an exploiter... besides having already suffered years and years by treatments and searches a thousand.... besides having to accept the removal of organs through total hysterectomy, going through all the symptoms of early menopause, then the torture came for good...
I kind of closed myself off to the world, for years, because it made me feel like I had no value, because I felt like I couldn't contribute to anything else, I felt, for years, less of a woman."
ENDOMETRIOSIS TREATMENT WITH PREMATURE MENOPAUSE
However, not all younger-than-average menopausal patients with endometriosis are necessarily taking analogs; as I said, above, in my case, I went into early menopause after having several organs surgically removed-including the uterus, cervix, and ovaries-to treat the symptoms of deep endometriosis. Before and after the diagnosis, I experienced several very high PMS's, depression, anxiety, and as a result, was incorrectly diagnosed with bipolar disorder.
Although the long and painful process of diagnosis and going through several surgeries was painful and at times traumatizing, I feel that the path is chosen, with all the suffering, was the best one. My journey to a life without so many haemorrhages, to ease the pain, hope to reduce foci and the progression of endometriosis (because in my case to eradicate I know it is impossible, I have foci in the sciatic), high expenses, allowed me to get back in touch with my physical body and feel comfortable in my own skin again, but this took about many years for me to recover my soul because as I said, during this period, I filed for divorce, my parents were very ill, I ran out of resources for the correct treatment, which includes specialized multidisciplinary team ... including the mental, emotional and nutritional part. I was very brave!
I'm still recovering from the wound, for what life has proposed to me, but I have a new perspective, I'm much calmer and I feel much more centered. The psychological strangeness of the mutilation, of no longer having any of my female reproductive organs is there, but finally today, inside I feel like the person I see in the mirror.
Despite suffering miscarriages before this process and the difficult conversations with many friends, doctors about infertility, researching, I do think about possibly adopting a child...
I can't, no longer take a ton of drugs and no longer get cut. It took a long time, but I was rescued, the physical and emotional reactions to the trauma I dealt with, made me accept my body, including the sexual part today, is much better, one of the big problems the disease causes... I became a mature and full woman!
Although all patients with endometriosis have different experiences with treatments, one thing is certain: it is a long and hard battle. Going through menopause at a very young age is a common experience, unfortunately, for us endometriosis patients, and an arduous one, because it is not a natural process. For some, this breakup brings anxiety, while it brings relief for others. But every patient with endometriosis seems to turn a difficult situation into positive action or learning.
I campaign today for Women's Health Interaction, to bring information and access, and to empower young patients with endometriosis to make informed decisions about treatment options and the way forward. I know women who have set up charities or NGO's, to help patients like us, who don't have resources or health insurance but need specialized care for endometriosis. Others have taken a more holistic path, creating prayer groups, yoga, support groups or advocacy and rights work, and so we endometriosis patients prove our high resilience over and over again as we struggle with this disease.
I have taken the depressed energy and used it to try to help other people minimize the pain of going through the same situation. I just try to make the process better for other people, to not go through what I went through, to seek to be better treated, fuller, more informed, more accepting, and to have happier results...
Here in Brazil we have almost 10 million women diagnosed (the same number of diabetics), and in the world almost 200 billion women, among women in the CIS, I don't know if these data contain other genders, such as trans men... who possibly maintains gynaecological organs, I intend to talk about various topics in women's comprehensive health, as my proposal for my platform.
About Interação Saúde Mulher Health FemTech – Digital Platform for Preventive Education and Women's Health Care
www.interacaosaudemulher.com.br– Sao Paulo, Brazil (deep endemotriosis carrier).