I wanted to send an update so that you can know what’s been going on. I’ve been experiencing severe period pain for many years without any body really being able to help me. Many doctors dismissed me entirely, the doctors in Grahamstown were the worst.

In my last few weeks in South Korea I had a month long period which was very weird. Going to a gynae in Korea is horrifying in general. I worked there for three years and saw four different gynaecologists. All experiences were terrible. This one was the worst. Apparently my 30 odd days of bleeding what looked like chocolate cake dough is fine and normal, my family’s genetic history didn’t matter (mother and aunt both had emergency hysterectomies), asking what she was injecting me with was considered rude and offensive to her status as an older doctor, and I just needed to be less stressed. Hmm.

Fast forward to finally finding someone in Port Elizabeth. He listened to me, respected me despite my rambling, and looked at what was going on. Based on my symptoms, he suspects that I ruptured a chocolate cyst on my right ovary.

He said he’d never seen cysts so clearly on the ultrasound, but I bet he says that to all the girls.

He recommended a laparoscopy  to confirm his suspicion of stage 3 endometriosis, maybe stage 4. I was concerned about money, so he started me on Visanne and said he’d see me in 6 months.

I started hormone therapy
I lost weight
I do yoga 
I meditate 
I exercise
(especially cycling)
I follow the endo diet
I see a chiropractor
I use aromatherapy 
Oh cannabis: the reason I have an appetite, the reason I sleep, it lowers my anxiety, relieves my pain…

I’m at Riet, I’m running up and down the beach. I’m picking up shells over and over and over. I’m petting the dogs. I’m cuddling the cat. I’m cycling. I’m walking in the mountains. I’m going to mall top dance parties. I’m hiking in Hogsback. We’re caught in a protest with R skillfully driving away while petrol bombs miss us, I reconnect with friends and family after a year away from home. I think my pain symptoms are a bit worse than normal.

What I think is ovulation pain is actually gastro.
I lose 5kg in 3 weeks.

My father’s response: why are you trying to lose weight?
Me: ? (in my head) For a clever person you’re very stupid. I’m telling you how sick I am.

Also, don’t tell me horrifying stories about nurses being suspended for not putting Mom’s catheter in before her emergency hysterectomy due to endometriosis and fibroids.
(I’ve only had two bad panic attacks about that, one resulting in R jumping in the shower fully clothed to calm me down, and burning his toast because he has to talk me off another emotional ledge)

I schedule an appointment for 30 June.
I luckily get a cancelation and see him early.
He tells me my ovary is twice the size it should be (oh, that’s why it’s so sore).
He books be for the earliest op on 19 June.

I’m so lucky to have this surgery.
He is taking a conservative approach,
he will save what he can
and take the ovary out only if necessary.

No matter what happens in this surgery things are good. Somebody believes me. He will ablate what he can. If it’s worse than he anticipates he’ll zip me up and send me to a specialist. The Visanne side effects are diminishing and they are stopping my period which will prevent regrowth. He’s given me antidepressants to help with the Visanne side effects, while the nausea, heartburn, and migraines are lessening. This  is so rambly but I just wanted to let you know and ask you to send me positive thoughts.

Finally. Advocate for your body. Find someone who will help you. You’re not crazy, the doctors do not have the necessary skills and knowledge to give you the medical, surgical, and palliative care you deserve and need.

lots of love

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