Donna lives in Britain and was in her early 20’s when she was diagnosed with Endometriosis. Nearly 20 years later, she tells us her story…including something that happened to her eyes about 10 years ago. She continues to live with Endometriosis and her eye-issue.
Donna’s Journey: Hi my name is Donna, it all started when I was nine years old when I started my periods. My childhood was ripped away from a very young age. I never had normal periods my cycle was every 14 days. When I would bleed I would often drench the bed with blood. My Mum took me to my doctor and he decided to put me on hormone replacement tablets to begin with. The pain I would experience was unreal yet no one really understood. Year in and year out my periods stayed at a 14 to 19 day cycle.
When I was in my early 20’s I started to suffer from depression and mood swings. I decided to go to my GP who was a gyne by trade. Straight away my GP took several blood tests which turned up abnormal (I was on the pill). My hormones were sky high so my GP decided to send me for an ultra sound yet nothing really showed up. My GP was still not happy and decided I needed surgery as something was going on with my womb. It was a massive blow as I went for depression and now faced surgery. They opened me up and found I had endo in four spots at this time. But the specialist was away on holiday no doubt, so I had to go back into surgery after a few months. That is when my life totally changed a month later I went back for the results.
Only to be told that my specialist found endo attached itself to my bladder, right kidney, bowel, pouch of douglas, pelvis and nerves. I was stage 4 I was told. I was confused and said but its a condition isn’t it! The Doctor shook his head and said “Donna, It’s a disease and as your stage 4 you won’t be able to have children. I would suggest that you should have a hysterectomy.” My world crumbled before my eyes as tears fell freely. I was only around 23 years old. I left hospital numb and refused a hysterectomy. I wanted to prove to the world that if I can get pregnant so could others.
Every two years I had to go back on the operating table to remove the dreaded disease that would come back again and again. You all know the pain, the isolation, the frustration of your body feeling like it’s not yours with this disease .
Then in 2005 something strange happened I was putting on my make up and noticed my left pupil was bigger than the right pupil. I thought what on earth is going on! I usually suffer from migraines around my cycle but I had never seen my pupils like this before. I started to see black spears, shadows around me from the moment I woke up to the moment I closed my eyes. In the end I went to my GP who looked into my eyes and admitted I had a problem due to pupil size difference so referred me to an optician who was next to useless.
It took me till 2008 and changing Doctors to find out what was wrong with me. Holmes Adie pupil syndrome my GP then tested my knee reflex jerks which was normal. The GP said it was due to migraines yet I wasn’t happy about this as it came with my cycle normally yet I’m extremely light sensitive every day. Would I have a migraine every day since 2005 that is totally different to normal migraines? Seriously I knew part of what my Doctor said was true but I wasn’t happy.
In 2016, My dear friend Kristy who works in a great opticians wasn’t happy with what I told her and booked me to see her optician that is totally on the ball. My optician was very sweet and confirmed Holmes Adie and referred me to hospital to have more tests done. Eyesight is fine yet I need glasses with a tint otherwise the page is a blur and looks painfully bright. Hospital Doctor was showing me off to one of his nurses due to the oddness of the Adie as its rare. No optic nerve massive damage was found. He couldn’t give me a reason on why this was happening and never asked questions if I suffered from Endo.
I did have a child, Kyle in the end who is a massive blessing and decided to have partial hysterectomy three years ago. My Gyne wanted me to keep my ovaries as he didn’t want me to turn into an old woman (his words!). Year in and year out my Endo has returned like normal and I’m seeing gyne in June to say remove my flipping ovaries, as I have a lot of problems with my bowel, right kidney and bladder even now. I will be telling my gyne about my Adie and its about time they look into this matter seriously as I’m still stage 4. My Adie pupil problems have remained the same if not worse with visual disturbance.
Finding out Endo is related to Holmes Adie pupil syndrome makes me angry and so isolated.
If I go out in the evening with my dear partner and son I have to wear sunglasses as on coming traffic kills my head and eyes. If I go into certain shops I have to wear sunglasses even if its dark outside. If I don’t I feel sick, spaced out etc. I have to wear sunglasses if I’m in the car in day light if I don’t my eyes hurt with the flickers of light from the passing trees. At times when my Holmes Adie pupil is very bad I feel like my head wants to explode and I feel like my eyes and ears need to bleed to reduce the pressure. I have a knifing sensation from inside my eyes (pupils) when its bad. It hurts to cry. So I have to try and not cry otherwise the pressure is unreal to cope with. Luckily I have tablets for when it gets too bad to cope (migraine tablets). I tend to take an anti inflammation tablet also as this helps. But still my pupils struggle to cope but its more manageable with regard to pain.
All I can say if your not happy with the pupils of your eyes do NOT give up and tell your Gyne Doctors. Don’t go the very long route like myself with GP’S as they won’t think about adding up Endo and pupils. I’m learning bits now via Oliver Sacks books (who was a neurologist) with regard to Migraines and Hallucinations (due to my visual disturbance with regard to my Adie). It has helped me lots to have the courage to tell you my long story with my freaky pupils and Endo.
Words of Advice for Us: If your gut feeling isn’t happy with an outcome from your Doctor then research and don’t let it rest. Be strong as your not alone. Hugs xxx
The Last Word: If I can have a child, so can you.
If you would like to contact Donna, you can email her. She’d love to hear from you, especially if you’ve had similar problems with your eyes, or suffer from Adie and Endometriosis and have questions for her.
I want to send a special Thank You out to Donna for being brave enough to share her personal story, struggle, and victories with us today. You are a beautiful, brave, and strong woman. Thank you!!! Please keep us posted on your Adie after your June procedure. We’re all crossing our fingers and toes for ya. ❤
And if YOU would like to share your story, please let me know. The best part about this disease is the strong network of love and support from our fellow EndoWarriors, and our friends and family, too.