Hiya, I'm 23 years old.. but I would like to point out I have the body, and mindset of someone who is about 18 years old. Just need to clear that up first.
For just under 3 years now I have been seen by my gynaecologist, where ive been brought into hospital/doctors with severe periods/pain.
I can't quite remember how it all began, but on 20th September 2014. I had my first surgery to have a cyst removed it was large, the same size as a melon. I was tearful and scared, stressed out to the max but none the less I got through it.
I was brought to hospital months later for another surgery in May 2015, as they had found another cyst on the other ovary that needed to be removed.
The same thing happened AGAIN, where I needed another cyst removed- June 2016.
Since that's surgery, I have had nothing but problems. Including period pains out of this world. - all this time - I've had so much pain and discomfort! pretty much every week there will be a two day period where I'll be in agony, I'll need oramorph at home as well as top ups of paracetamol and coffee to get into my system quicker. It cures the pain to a degree, but it certainly makes my head spin. I have no energy where I have these down days and just sleep and nap.
From this my body has changed and I've got weight problems. I'm "90" on the scales at the hospital. I presume it means "90kg" is that bad!?
I'm using slimfast shakes in the morning and at lunch time just to try and loose weight but it's a real problem where I can't seem to exercise because I'm hurting all the time.
In my May surgery (the second one) I was fitted with the Marina Coil. I presume it's working - because I haven't had a bleed since, just old blood spotting, nothing serious.
However. Here is where the problem lies, I'm in hospital again. Right now!!! I was brought in because I was in so much pain, and kept collapsing and going really dizzy. It was destroying my life, as this all happened in public places, and at home in front of my boyfriend.. I couldn't think of anything worse!
I've been in hospital since Monday. (I would like to point out I've not "pood" since being in hospital yet... I've eaten and drunk where possible. I don't understand. Is this even normal? Is it anything to worry about? I just do not feel that I need to go.
Anway, being in pain I've been dosed up with tons and tones of painkillers, oramorph, codiene, paracetamol.. since being here..
Day1: I had a scan, I have high anxiety so I'm really tearful anyway. But it really hurt being scanned. Like the pressure, so of course being highly anxious I burst into tears. Anyway he confirmed that I had not only 1 but 2 cysts, on each ovary! But one is smaller than the other and they have both got smaller since the last scan. So we're talking about 6cm" overall on the right and 3cm on the left.
The doctor came round and said he won't do a surgery as he doesn't deem it an emergency or an essential thing to do... this wasn't my normal doctor it was someone different. Here is the conversation summary.
"Why? I'm in so much pain. Why won't they!? It'll solve everything if I have them out.." his reply..
"It's intrusive, we do things by the book, your young and having surgery and going under annestetic is dangerous and not something we want to do. It could affect your future to have children!"
"But I've had surgery before" I say, "I just want them out, I feel medicine covers up the problem rather than dealing with it head on"
"Ok" he says with student doctors and another doctor just starting at me sobbing feeling as if I'm another one of those problem paitents. "I'll see what I can do" He says this in a tone of voice that really says he isn't going to bother he just sees me as dramatic.
By this point I've had enough, I've been here 2 days and nothing seems to get done, I've been in floods of tears. I have a drip in one hand and the other wiping my eyes from sobbing so much. I've also go no eyelashes the tears have taken those away with them.
I rung my mum - she and I are ever so close and even she was shocked. It was almost the feeling of being given medicine to shut me up rather than just dealing with me.
The doctors came back and said they can't operate or do anything without the say-so from my consoltant who's away.. he's a nightmare to get hold of and always seems to be on leave! So they just need to manage my pain.
My theory is, what about another paitent who has a severe issue and needs operating on as an emergency- they'll have to operate then? Without his confirmation!? Frustrated and angry and ultimately bored and hurting... I rip off my wristband and pull off those stockings.
My boyfriend appeared just after and saw me sobbing. I hadn't eaten, I was tired and wasn't sure what was going on. I had my head in his lap and just cried, overwhelmed for his appearance to visit me, and also because the house keeper snapped at me "nothing left" when I ordered some tea. I just want to point out I didn't starve- my man bought me a Costa hot chocolate and a pizza sandwich.
The other nurse also came around and reassured me all will be okay, this nurse seems to be the only one that understands me and really sympathies with me. She was really nice and made me smile and laugh.
Next my specialist's assistant came over to talk to me I said how desperately I wanted to feel better and just have a surgery.
((I go into my final year at university in less than I week. I feel like calling them and saying "I'm done" I just don't see how I can go back without this issue fixed!))
((The nurses and doctors and everyone here has been to uni, and got their qualifications, I feel like they are stopping me from mine. ))
Because I'm that awkward patient who has no idea whats going on, or why these cysts keep coming back the way that they do! Could it be the Coil causing all the problems? Could it be that my body is younger and different where I started my periods at 16/17 years old?
They've put me on Pregablin? To sort of suppress the ovaries which is what I've been told, has anyone else been on these medicines? Do they work?
My surgeon has just come round to see me, he understands everything. My heightened anxiety, the fact I start university in my final year soon! He's going to scan me himself in a weeks time to see what's going on, and what he can do! He's very kind even though he's a nightmare to get hold of, and really understanding of me.
I just want some clarification that I'm not alone, I will one day be able to have children, even though I have endometriosis- we'll Add-Oh-No-My-Osis? I want to know I'll be okay, and we'll... that what I've said people can relate to. Because I'm desperate. I'm so scared.