EMS lives in New Zealand and was diagnosed with Endometriosis this year – at age 34. This year she exhibited signs of a stroke, dizziness, trouble breathing, all around her period – she fought for a proper diagnosis, and had to fight hard. Stage IV Endometriosis. Not stress. Not anxiety. Not a stroke…Endo.
EMS’s Journey: Wow…. okay so in February this year I was having excruciating pelvic pain. Doctors in the ER thought it was gallstones so they treated me as such. Upon them trying to flush the gall stones with meds, my body re acted and we now know it was Endo that I have. My brain slowed down and all of a sudden I couldn’t think to form a sentence, then my eyesight went blurry, then I started seeing double and the room was moving. Then my limbs shut down and I couldn’t move at all and I developed a shocking stutter out of no where. The stutter lasted close to two weeks. One incredible doctor got me up and moving again but only incredibly slowly, but it was enough for me to get myself the rest of the way. After many doctors came to see me to work out what was wrong, I had a CT scan at which time they were looking for evidence of a stroke and didn’t find any of such evidence. They didn’t tell me anything, they just told my partner that they didn’t find any sign of a stroke.
When we look back on things, we know that I was day 2 into my monthly cycle at this time. I was diagnosed as having my brain go on holiday. I kid you not, that was the diagnoses I was given. That particular doctor said that once I rid my life of whatever was causing my stress, I would come right. Of course I didn’t come right.
Then come April, I had my very first seizure. Full blown seizure. I struggled to breath. I remember gulping for breath. I was taken to the ER. The doctor there said that it must be stress. She couldn’t put it down to anything else. I asked for a CT or MRI, I was very angry and said I’d never had a seizure before in my life and demanded that she get to the bottom of it. She said that as I’d had a CT before and it was unremarkable there was no point sending me for another one. So she discharged me.
I went home and the very next day I seizured again, again gulping for breath. Back to the ER. This time I had a doctor who was more intent on getting to the bottom of it and he sent me to neurosurgery. A team there monitored me for a number of days but decided that I had extreme anxiety and that I was in denial. I tried so hard to say that that wasn’t me. They put me on antidepressants and made me see a therapist. So I saw a therapist for weeks and she said after my very first visit that she could not detect any anxiety and she worked with me to get my GP to arrange for me to have an EEG. The antidepressants also ironically made me very depressed and I demanded that I come off them. The EEG showed definite signs of seizures and I seizured in front of the neurosurgeon there, but there was no signs whatsoever of epilepsy. My doctor put my on seizure meds which helped for a long time until I asked to come off them. They were only masking the affects of everything.
Not long after I came off them everything got a whole lot worse. We didn’t think it could get any worse. My brilliant partner asked to have me checked for my female parts as he had noticed that things only went haywire at that time of the month. Sure enough I was diagnosed with Stage Four Endo. Now I have a Zoladex implant, but the seizures are still active. I am currently waiting so see a consultant.
I have done huge amounts of reading to try and find a link between the Endo and the seizures. I’m not medical person of any sort and no medical person yet has been able to confirm any of this, but from what I have read, in very rare cases the Endo can get into a persons central nervous system. I had two rounds of spinal surgery 5 years ago and had rods put either side of my spine and screws put into my spine and then removed during the second round. I have to wonder if that has something to do with it all. If the Endo has maybe attached itself to my spinal cord. I intend to ask the consultant this when I see him. I just hope that’s not too far away.
So for now, I have seizures every month. And its scary as hell, but today, for the very first time, I have found some relief in finding this blog and others who have this also and who are also looking for answers. xo Thank goodness for you all!!
Words of Advice for Us: If you know it in your bones that you don’t feel right, fight for yourself! Get the answers you need, because you owe it to yourself. xo
The Last Word: Know that there are others out there, sometimes we spend hours searching, days, months searching, but we can find others who know xo Today, I found this blog and I swear its like a Christmas present to me to have found it. Now I’ve found others who also have seizures.
If you wish to contact EMS, you can email her here.
I want to send a special Thank You out to EMS for being brave enough to share her personal story, struggle, and victories with us today. You are a beautiful, brave, and strong woman. I am SO proud of you for continuing to push for your answers. And am very, very, very glad you found this site. We are all wishing you the very best in your upcoming appointments and hope that your healthcare providers are able to do something about those seizures – and to check out all areas of concern. Thank you!!! Please keep us posted!
And if YOU would like to share your story, you can do so by clicking here. The best part about this disease is the strong network of love and support from our fellow EndoSisters, and our friends and family, too.