It’s endometriosis awareness month and day, today also marks my 11th surgery-free year. No longer calling yesterday my lap-nniversary (a horrible word for a horrible thing) but today marks my life since my only ‘lap’ (but with chronic illness, allergies to chemicals and foods, and while edging closer to the next laparoscopy?)
My body remembers March before I do. Other times, I think of my illness as of building damage that I maintain, something that left many and varied scars but that is only a threat with no harm being done actively. Luckily I’m still without Endo complaints, with pain only like before but it’s huge and more scary this year, because of my present circumstances. It is scary because I have a new illness which makes it risky for me to use hospitals (perhaps even potentially lethal currently, I can’t measure the risks) or any health or other service, so I’ll have to somehow keep avoiding surgery. In Endo support groups, others seem to be having surgery often, medical cover anticipated I would often need one and I knew a woman with the same history of endom who had 5 surgical ops in 7-8 years.
It’s not that tragic, a car accident could put me in a similar situation but this is an additional threat with all the potential flipping side effects. The last side effects: my long list of allergies to so much including chlorine, other changes I won’t publish and perhaps psychological issues other than the ones post-surgery. Under ‘normal’ circumstances it is not fatal but who doesn’t want to avoid surgery so I’ll share this blog and comments (albeit I’m not sure how to view whole comments) for information on alternative medicine. In my unique case, I may be alive today only thanks to overcoming some skepticism, trying all I could, hard work on the treatment and some level of trust towards the doctor.
We can never stress enough on how important it is for gynaecologists to respect patients (usually for respectful treatment with explanations, try an endocrinologist not a gyne). When I was healthy other than for endometriosis and sequels, on allopathic treatment that was failing and I wished for a hysterectomy that would perhaps eradicate the illness, I saw a few gynae in private healthcare in a quite affluent suburb near my student suburb in Capetown. No one would agree to a prospective hysterectomy even at my next endometrioma, for the same reason permanent birth control is refused to females of certain ages. At 22-23, “I was too young to make the decision” that I do not want to use my uterus. I didn’t want children biologically, I came to this decision more firmly post-surgery before my diagnosis, from the severe pain (aggravated by the lack of help by a lazy and verbally abusive night staff at an expensive private hospital which I had paid upfront, actually payment was a condition of admission in any hospital – in public ones bc I was a foreigner). A doctor compared my uterus to a healthy limb that could not be removed, and said the same for that of the endo sister I mentioned: she had had her rectum replaced with metal plates and suffered a lot daily as a result but surgeon would not remove her ovaries/uterus upon her request before surgery because she was yet to have a child biologically. There are many full orphanages, furthermore struggling with funds in that country! Motherhood, by the way, is a job. If you choose it or aspire to it, great!
“Does anyone else find it odd that our society expects 14-year-old kids to know what jobs they will want for the rest of their lives, but doesn’t believe an adult woman when she says she doesn’t want to be a mother?” (an unattributed quote on FB via tumblr)
More education and privilege than her, and perhaps luck too helped me find a way to avoid surgery. Today I’m sharing this online and reportedly only 8% of South Africans have internet access, the most affluent 8%. I’m in Mauritius where the alternative treatment I use for this illness is not available (well, there is 1 practitioner who, I was told, molested a young female patient so there’s no practitioner as far as I’m concerned) and customs officers said I can’t receive such medication by post for whatever reason. So, it’s me commenting on Gwenn’s blog about the 6-monthly $5 treatment, it’s actually 9-monthly (I counted properly with limited stock) and costs even cheaper if you buy 50ml or more. Getting on the long-term effective homeopathic treatment took a lot of trial-and-error, changing, or changing doctors. That was the costly part but surely less than a year on the pill for me. Some good hearts out there see patients pro-bono, some may give advice online and no prescription required to order meds or buy them from a pharmacy if you’re lucky to be in such a part of the world.
Among diet changes Gwenn and I mentioned, dairy is surely the most significant culprit because dairy contains estrogen. There have been adverts and claims about pain-reducing effects of dairy but that’s because of the casomorphine which also makes it addictive.
Painkillers, magnesium and magnesium salts (these were my preferred choice) work better with no harm.
Nutritionfacts.org is a good place to research the other foods for brief technical information linked to inflammation or other hormone-related illnesses.
Marching virtually today, for #endometriosis with my siblings, and sisters 💛 💛