So yesterday I was diagnosed with Endometriosis.
I started my periods when I was 11, my Mum and Dad seem to think I had occasional bleeding when I was younger from the age of 8 / 9 but I can't remember, maybe it was so horrifying I've blanked it out! But that would make sense as my Mum started very young too. Although she has an inverted cervix, she doesn't have Endo
I first went to the doctors about my heavy periods and agonising cramping when I was 12. I was told it was 'normal', it was all in my head the pain and to basically, 'stop being a baby'. There begins my missing school once a month mainly just before and on the first day of my periods.. for five years.
Thirteen years old.. Severe cramping, sweating, can't breathe from the pain.. Mum takes me to hospital, I'm in A+E.. after waiting for 2 hours in agony, I'm told to do a urine sample.. I go to the toilet, and feel like the world's biggest idiot. I've come on my period, demanded that my Mum take me home and I didn't want to speak to anyone as I'd already been told previously, it's in my head etc. I was 13, my Mum tried to make me stay but I was like, 'What are they going to do? tell me I'm a baby and it's normal? I want to go home, I'm so embarrassed'.
I went to the doctor's numerous times about my periods when I was in school, to be told at 14 I had Chronic Fatigue Syndrome and that is why I'm 'highly emotional, depressed, tired, having pains in my back and legs' and yet again I was told my pains were all psychological. (Obviously we know now.. I DO NOT HAVE CFS and I never believed I did anyway, I was never satisfied with that at all.. but at 14 you're not going to argue with an 'experienced' doctor!) At the time they also tried to put me on anti-depressants whereby my Mum ripped up the prescription and said that's ridiculous, no you're not taking those. (She's a mental health nurse, I should have mentioned this; so I always listen).
Fifteen years old... I'm put on the contraceptive pill and Mefenamic acid to alleviate pain and heavy periods. This DOES work well.. Mefenamic Acid.. not so much, irregular periods (I'm talking having them every 2 weeks for 7 days and then very randomly I would have no period at all).. I found Mefenamic Acid very difficult to take.. how the hell was I supposed to know when I was starting my period, was absolutely pointless keeping a 'period diary'! And from what I remember you have to begin taking them before you start your period. Waste of time. The contraceptive pill was fantastic right up until I was 21.. more on that later!
Numerous visits later.. I FINALLY get a doctor who is willing to examine me, this is now at 16 I'm already sexually active; sex is painful. Go to the doctors, I get examined, I have swabs taken and told they suspect Chlamydia which is why it's painful. Examination is incredibly painful, I also wasn't made aware I was going to get an internal examination after swabs were taken without a speculum, just with her hand. Which has led me to be absolutely petrified when boyfriends have put their hands there. If I'd been told she was going to do that with her fingers and check around, I wouldn't be like this! I'd never had an internal like that before, how the hell at 16 was I supposed to know.. prompt me crying from pain! Oh, MUST point out, Chlamydia test came back.. you guessed it.. NEGATIVE.
I go back at 17, this time to see the nurse, yet again with the same persistent problems but this time I'm now at college, I'm struggling to concentrate on my work and remember things. I'm in pain, I'm crying randomly, I feel like.. well.. I felt LOW. I can't really describe it. Got told I had depression, again pain was psychological etc etc. All the usual crap they come out with.
This goes on every year. Constantly going back about my pains, I hit 21.. I begin suffering with focal migraines where I'm fainting from the pain in my eyes and my head.. this is apparently due to the pill, I have to come off it straight away. I try out the other type of pill where you don't have a 7day break and you take it consistently. This gives me acne. Not what you want at 21.. or any age for that matter. I try out many over the years.
23 Years Old...
Came off the pill altogether, totally given up on that one. My agonising pains come back, worse than they were before I first went on the pill. Doubling over in pain, waking up in the morning and being sick, not being able to move, my whole body numb and tingly, can't even move to bend over it's like my body has spasmed from the pain in my sleep? Very strange. The start of not going in work when my period is due. Crying all the time, even when I'm not on my period. I could be feeling happy and then I'll just feel low. Agonising pains, back and leg pain where my legs are locking up, sickness, diarrhoea on my periods, constipated when I'm not, dizziness, fainting, not even tired.. the word is DRAINED. Random periods all over the place, go back to the doctor they tried putting me on another pill, wouldn't listen when I said I don't want it, tried making me have a coil fitted.. again I said NO. Something like the coil scares the hell out of me.. I mean Jesus, fingers hurt what the hell is a coil going to do to me? I know they are small but I wasn't about to risk that. Leave the doctors and go home and cry, and feel like the biggest baby in the world because it seems like no-one is listening to me when I say I'm in AGONY and it's severely messing with my life.
I'm now 24.. I'm 25 in September. I have been putting this off for the past year and a half I would say.. in particular these past few months. I just kept thinking, 'WHAT IS THE POINT? NO-ONE CARES, NO-ONE UNDERSTANDS'. Then last Thursday (think that's the 12th June 2012), I thought right I've got a day off, I'm going.
I went to see the nurse at my new doctors (who by the way is lovely). I explain my symptoms, this time with heavy discharge and everything else. I wrote my symptoms down and reeled them off to her so I was sure not to miss anything. I had swabs taken, speculum was PAINFUL, I had my first smear test done as I'm in the 2 month bracket or something, in other words I'm nearly 25!, Then I had an internal examination, as she was pressing on my lower belly, she moved over to my left and I shouted out in pain and started crying. I have the most agonising pain on my left side. She says there is a severe swelling there and that she is going to send me for an ultrasound scan (finally, we are getting somewhere), she moved over to the right side, I was in pain but nowhere near as much.
So I'm at home, reading about fibroids and ovarian cancer, scaring myself to death basically like an idiot but hey.. Google was there, I researched. I was to expect a letter within 4-6 weeks with my scan date.
On the following Wednesday, I'm beginning to look shocking ( I work in cosmetics, it's not the best environment to have a hang-up about your image ), I'm in pain, I'm thinking to myself, I just had a period, this isn't a period, this freaking HURTS. Everyone in work asking me if I'm okay because I don't look well.
Next day at work, I don't make it there till half 1.. I made myself go to the doctors in the morning. The doctor went through my swab results and said, well there's no infection there and if you're being sick, it's food poisoning, your temperature is slightly up. So I go to work thinking, food poisoning? Ok. I can work with that. Uh uh.. I can't.
I'm faint in work, crying from pain, can't stand up. Paler than Casper the friendly ghost (I'm a redhead, (one that tans golden) so I'm already pale, I don't need any more white on my skin!), Eyes all swollen and puffy, everyone coming up to me going, ''Liza, are you okay? You need to go home, that is not food poisoning, you wouldn't be like this''. Hours later.. I'm in A+E, on demands by my amazing manager who forced me to go there.
Speaking to the triage nurse, told her what the doctor said that morning, she was like, 'No, you do NOT have food poisoning'. Blood test was taken, urine sample etc., examination done of where my pain is. The doctor I got at A+E was fantastic, she was like right in the morning you're going for a scan, you need to go here and here and make sure you drink plenty of water before you go.
So the next day (yesterday), I drink 2 litres of water (thinking that would be enough). I go to Jasmine Suite (how cute, reminds me of the Disney Princesses!), I lie down for my Ultrasound, my bladder has apparently a tablespoon of water in there.. I was like HOW! She said I could be dehydrated! She's doing the scan as best she can, she really needs a full bladder for this. She said, 'where is your pain?' I was like the left side, she said, 'that's odd, as you have a cyst on the right'. I then have to have a trans-vaginal scan, which I was absolutely scared of, but I made sure I was relaxed, and it was minimal pain, but was painful on the left. She tells me that it is an Endometriotic cyst which is 11cm. Scan over.
I then have to wait to see Doctor George (who is so lovely! and I've been doing my research, apparently he's amazing), he then spoke to me and said, he wants to do keyhole surgery to remove it and to also be able to see what's on the left side, as they couldn't scan my left side properly as my uterus and everything is pushed over which is what is causing the intense pain.
I'm now waiting to go back on the 7th August, which is the next available clinic, and he said that I must write down any questions I have AT all, and he will take time and go through everything with me and explain what Endometriosis is and what can be done to alleviate pain in the future etc.
So.. that's my story. If I remember more, I will add more. I got home yesterday and cried.. cried with relief, with anger and frustration and generally crying because I'm scared about this 11cm. It's a whopper of a chocolate cyst. So if anyone has any kind words, I'd be happy to hear them I've been researching since I came home from work today.. I'm supposed to be out at my friend's wedding reception tonight but I'm drained, it's an effort to write this but it's actually made me feel better.
Thank you, I'm sorry it's long. I tend to waffle. I just hope it's relevant? Like I say, when I remember more, I will add to it. It's very hard and difficult right now, as I went so many times.
Unbelizable submitted this EndoStory on Saturday 21st July 2012
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