Guest post: My endo story - part 1
24/09/2017 guest post
A personal story by Helena from Fertility.sk
I have the privilege to present a series of guest posts by Helena Bielikova, the creator of Fertility.sk and Fertility.cz. I truly believe that sharing our personal stories of healing can help us all find our own way towards high quality of life and vibrant health. I hope that this series will help you find inspiration and motivation for your own healing journey. Thank you, Helena!
A big thanks goes to Heather Jacobsen, author, nutrition researcher, poet and host of the Facebook Group Treat Endometriosis and Adenomyosis Naturally, for kindly proofreading the English text!
Stay tuned for the last part of the series, where Helena shares her Practical guide to managing endometriosis naturally!
Never stop hunting for good vibes!
Part One - Diagnosis and Surgery
There were times when I thought I was destined to spend the rest of my life in constant physical and emotional pain, never fully explained or understood, never able to reach my dreams and potential. I thought I'd never ever be able to have a baby. But I found the way to defeat what seemed to be my destiny. I stood up for my body at the hour of greatest need, walked through hell and came back alive - stronger than ever before.
I was diagnosed with endometriosis in 2009 after four years of struggling with almost constant pain, terrible menstrual bleeding, and unsuccessfully trying to conceive. I was hospitalized several times due to fainting from severe uncontrollable pain. I tried five different gynecologists, two psychologists, four TCM practitioners, a couple of physiotherapists, several herbalists. I tried numerous different approaches to healthy eating including vegan, paleo, Traditional Chinese Medicine (TCM), nutrition, the blood-type diet. Some approaches were slightly helpful, others were not, but generally, no amount of effort and trying brought significant improvement, let alone pregnancy. No one was able to explain my difficulties or give me some working plan. Doctors recommended trying IVF, but the first visit to IVF clinic was enough to make me realize this is not for me. There must be another way.
I was depressed and angry at the whole world, at everyone who looked so happy, laughing, having babies and living their life so easily. I was angry at all the doctors and therapists who promised solutions but didn't deliver any. And most of all, I was angry at myself for not being able to do something reasonable with my life, for spending hours, days, weeks in pain. I was angry at myself for all the lost beliefs that I would get better, that I would have a baby.
When I finally received an official diagnosis, I was a surprised, relieved and scared at the same time. I knew what endometriosis meant, I knew it was perceived as a debilitating lifetime condition threatening overall health and fertility. But at least, all my suffering had a name, there was finally something I could grab and try to resolve. There was so much information about endometriosis available on blogs and websites — so much that I could at least try to improve my condition.
Unfortunately, at the time of diagnosis, my endometriosis was rather severe. Although I always hated the idea of abdominal surgery, it seemed inevitable and I didn't have enough time, energy or knowledge to come up with any other plan. So there it was. I went through a couple of pre-op examinations with excellent results. Given the fact I was feeling so bad, it was almost ironic... what value are such examinations, telling me that I am in great health, when I feel so sick and in pain? Anyway, I was glad everything looked good and I could proceed with the surgery as soon as possible. The date was set to March 13th, 2009. And it was a Friday.
The first thing I remember after waking up from anesthesia was the worried face of the surgeon who operated on me. He was there to make sure I was OK, and let me know how the surgery went. He told me I had an ovarian cyst of over 5cm in diameter, attached to a big endometrial lesion in the rectovaginal area, countless smaller endometrial lesions in the abdominal cavity and many adhesions on my bowels. Even though he tried his best to keep my fertility intact, my right ovary and tube were way too damaged by repeatedly bursting cysts and had to be removed. Luckily, my left ovary and tube seemed fine, as well as my uterus, and I should still be able to get pregnant.
I was slightly disappointed by the loss of one ovary, but also very much relieved by the fact that I was still alive, and that the big painful lump was gone. I was really weak for some time after the surgery, fainting from low blood pressure (it was something about 60/40), my belly hurt all over, and there was an unfamiliar pain and irritation from air bubbles under my shoulders. But I was back and decided to recover as soon as possible. After being released from hospital, my loving and devoted mom stayed for a week with me to take care of me until I got better.
Helena Bielikova is a former endometriosis and adenomyosis sufferer. Her own experience with searching for the most effective natural treatment led her to create the websites Fertility.sk and Fertility.cz, providing information about available options for fertility issues in the Czech and Slovak language. Helena is an author, speaker, reproductive health coach and a big advocate of natural treatment of endometriosis, adenomyosis and other infertility issues. In private life, she is a mother of three children, a passionate cook, reader and gardener.
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Part Two - Learning to Take Care of My Body
I was supposed to get back to work two weeks later, but I didn't feel well enough to go back until four weeks had passed. When I did come back to the office, that very moment I realized I couldn't go on like that. If I wanted to keep my second ovary and have a baby one day, I had to quit this crazy, stressful, demanding job and do something very different for a living. So I did. I quit that day and never came back. The ladies at our HR department were kind, trying to offer me some other solution, but I insisted.
A part of me felt like the bad-ass girl I hadn't been for years, but I was also proud of myself for standing up for my real needs. What is a job and career, compared to health and family? According to my gynecologist, I was supposed to get pregnant within three months after surgery, otherwise the endo may grow back and make pregnancy much harder to achieve.
So there I was: unemployed, still a bit week after the surgery, and supposedly trying to conceive again. But how could I even try to conceive in such a shaky condition? Even with the cyst and adhesions removed, my body was far from ready to carry a baby. They had cut into it just a month ago, and it needed to heal first. I promised my body I would take good care of it, and I wouldn't allow another surgery.
Besides an effort to get well, I also had to find a way to make at least some money to feel useful and productive. I had studied design and created some websites before, so I decided to go in this direction as a freelance web designer. In the remaining free time, I studied all available information about the natural treatment of endometriosis and infertility. I analyzed every new piece of information and decided whether it made sense or to discard it if it seemed illogical. I was overwhelmed by all the possibilities and connections. I wanted to share all the interesting news with other women seeking solutions. I decided to create my own website dedicated to fertility issues and natural treatment options.
New findings helped me to put together a better treatment plan, and I started to feel much better than before — more energy, less pain and bleeding. But pregnancy was still elusive. The doctor again suggested trying IVF before it's too late, but I had already made up my mind about that issue. I have a serious disease with genetic background, which means there's a high risk of transferring this or similar estrogen-dominant condition to my daughter. My mother suffered from uncontrollable menstrual bleeding over twenty years, until she reached relief after menopause. Both of my grandmothers had issues with bleeding, one of them also suffered from an autoimmune condition. My mother has two sisters, both had uterine cancer.
How could I pass this onto another generation, without having some functional approach to healing at my hand? I would either find a way to get well and pregnant naturally, or not at all. My husband agreed and we decided, that if I didn't get pregnant any time soon, we would explore adoption.
Signing the adoption papers and passing the adoption preparation course was an amazing relief. We were officially approved and on a waiting list for a baby. From now on, time worked for us. Sooner or later, we would have our bundle of joy, no matter how my endometriosis progressed and whether my body would be able to create and deliver a baby or not. We would have someone to pass on our love, care, knowledge. I was so looking forward to the moment our phone would ring, and someone would tell us: We have a baby for you!
Yet there was still a hint of fear: What if someone finds out I am sick? What if they change their mind and delete us from the list? What if we get the baby but something goes wrong and we will have to return it back to its biological parents? That would break my heart.
One might expect that the joy of an approved request for adoption (in the Czech Republic, adoptions are mostly mediated by a government institution) would be enough to make me finally healthy, or perhaps help me get pregnant, but it was not the case. In fact, my health began to get worse by small, almost unnoticeable steps. Every period was a bit more painful and a bit heavier than before. I was pretty much convinced that I was doing everything right. Eating a very balanced diet full of healthy meals and supplements, almost no stress, plenty of walks in nature. So, what was I overlooking? And how was I going to take care of our adopted baby, bleeding so badly, weak and in pain at least one week per month?
There must be something more, I thought. I can't be this weak. I have to pull myself together. I got a reference for a good physiotherapist, who also had nice results with fertility and feminine health issues. On our first appointment, she told me my pelvis was completely stiff and my deep pelvic muscles were weak, and there was no way the female organs could work properly in this condition. She did some massage and recommended exercise at home. I followed her instructions — exercised, changed the way I breathed, walked and stood. The first period after I started this regime was slightly worse but I knew it could happen, so it didn't throw me off. Follow ups next month showed some improvement and on my third appointment she said: "It's finally starting to look better; the organs are already moving. If you don't want to get pregnant, use contraception." I laughed and thanked her, thinking she was perhaps overly optimistic, exaggerating the outcome of her work. After all, the sole purpose of all this effort was to get better for our adopted baby, to be a good, strong, healthy mom to him.
Read how the story continues: Guest post: My endo story - Part 2
Stay tuned for Part 3 containing Helena's Practical Guide!