My story.

[lmkk]

Hi my name is katrina, i'll be turning 21 in a few weeks. I have had pcos since i was young, about 14 we think it started. Although i wasnt diagnosed for years! I only found out in feb this year, its still pretty new and im finding it a bit hard to cope with. I also have endimetriosis.
It took me years and years to find out why i was only getting a period twice a year, doctors kept saying "its normal.. it'll regulate eventually.. " and then when i got to 17 and 18, i got "its normal for you". About december 20 of 2006, i found ANOTHER doctor, and i demanded she do something because i knew that something wasnt "right". She did tests, and when i got a call saying id need to come in and speak to the doctor, my doctor had gone on holidays, and i had to see a replacement doctor. That doctor was extremely rude, and she spoke very bad english, i didnt understand a thing she said and because i kept saying "excuse me" she ended up telling me that i couldnt have kids, that ivf might help later on in life, and kicked me out of the room.
I attended these appointments on my own, because my family and friends didnt believe that anything was wrong with me, so i didnt have any support and i didnt know what was going on.. so i ended up pretty depressed, and reckless.. i had a new boyfriend, and because i knew i couldnt get pregnant, didnt take any precautions after then, and i also lost a lot of weight, from stress i think..

So in august 07, i was moody at work, throwing up all the time, eating and gaining weight, my belly was tight, and i was having really strange cravings. My entire life until then, i hated red meat, but all of a sudden i was craving steak with cream cheese. I also had a thing about tomatoes.. tomatoes in everything.
My work mate Molly, who was studying midwifery at the time, kept telling me i was "glowing" and that i was pregnant. I told her that i wasnt.. absolutely certain that i wasnt.. and she kept at me for about a month.. and one day after work, i threw up twice before i left, and she said go and get a pregnancy test.. and so on august 3, i bought a pregnancy test, and i was a bit down about it, i got home and threw it on my bed, and didnt wanna do it, i didnt want to have to face it again...
Later that night, i did the test, and i left it on the counter in the bathroom, because it said 10-15 mins.. so i left and i avoided it.. i went back in about an hour later, and i picked it up and went to throw it out, before i realilsed that 2 blue lines means you're pregnant.. and then i was crying but not really a happy cry because i was only 19 and i hadnt expected it.. i think the last 8 months had been so tough, thinking id never have kids.. and id wanted to be a mum since i was in kindergarten.. so i was in shock..

So i went to the doctor, had it confirmed, and then had to wait 4 weeks for an ultrasound appointment. My gp did a physical exam a week before i had my ultrasound, because i had no dates to go off, and she said i felt about 10 weeks pregnant.. when i went to the ultrasound, i was told i was 17 weeks pregnant!! It was a shock, i almost fell off the bed.. I had my boyfriend and his mum there with me, and they were both shocked.

I had a really hard pregnancy, id thought all of the pain id been having in my tummy was normal, as id always had that.. turns out i was in for a tough pregnancy. I ended up having to make a choice at 20 weeks, if i continued working (a very physically demanding job) i had a very very high risk of going into premature labour.. and at 20 weeks the baby wouldnt survive..so i think that was the easiest decision i ever made, but eventually by 6 months, i was bed bound pretty much, i had bleeding, and kept fainting, and even just doing dishes brought on the labour pains.. ended up in hospital overnight a few time too. So it was a very boring few months.. but the most important of my life.
After all of that, i have a beautiful little girl, Tilly Louise. She was born on January 29 2008.

After i had tilly, i developed endimetriosis, and its really hard to cope with.. physically and emotionally.
In august 08, i suddenly gained a lot of weight, tiredness, had pains, random vomiting too, and couldnt stomach food. My doctor kept saying i was depressed, but i was certain i wasnt, and kept going back to her. In feb this year, i went to her with a clip from a magazine, about ovarian cancer. I had all the symptoms except constipation, and i have a strong family history of it, so it was only then that she said she'd do normal tests to rule it out.. and thats how i found out about the endimetriosis and pcos.
I get pains most days, most days its there, but i can cope with the period like pains.. its when it becomes severe and i get shooting pains, and pain in the top of my legs.. thats when im finding it hard to cope. I also find it really hard to cope with bathing tilly. Everytime i bend over the bath, the pain gets so bad.. i almost always end up lying in bed or on the couch.. its depressing when i have to get others to bath tilly. I am lucky though, i live with my parents, and so my mum baths tilly everynight, while i do dishes after dinner. It sucks, id rather be playing with tilly in the bath than standing there doing dishes.. Showering tilly is ok, which is something.. but shes 17 months old, and the bath is the ultimate play time for her.. she loves her baths.

I am lucky to have my family, especially mum and sarah.. but its hard because they get frustrated with me, and dont really understand. they are waiting for me to get better, and every few weeks we go through a week or so of them being really moody toward me, which i can understand, because it must be frustrating and hard for them to see me so unlike myself.. im always tired.. i have trouble sleeping with the pains, and i try to have a nap every afternoon with tilly, it gets me through til bedtime.
And my dad, he always has comments and opinions about it. Like the pain is for attention, and i want an excuse to be lazy (because of the naps i have), and he always says "doing a katrina" or "just like katrina" when he talks about someone whos lying. Its really hard to deal with, and even though my doctor diagnosed it, he still insists im lying about having it. I try to talk to him about it, but he doesnt want to listen to "lies", and ive asked mum to try, but he says shes "babying" me.. its really hard.

I also have days where i just dont get anything done.. the house will be tidy, but i wont get washing done, or the carpets need vacuuming and i just cant.. and they dont really get it. I try really hard, i dont think im lazy, im always pushing myself to get stuff done, sometimes i just fail.. and i dont know anyone else who has this, and most people have never heard of it.

My doctor has prescribed the pill and im living on panadol, and also an insulan suppresant i believe it is. but its a long wait to see a gynacologyst. I wouldnt be surprised to have to wait another 6 months. but in the meantime its just day to day, i always seem to be struggling with it..

The reason im really here is to hear from other people, how they cope with the pains of endimetriosis, and how to cope with the emotional side of it.. i find it really hard.

[Ducky]

My doctor has prescribed the pill and im living on panadol, and also an insulan suppresant i believe it is. but its a long wait to see a gynacologyst. I wouldnt be surprised to have to wait another 6 months. but in the meantime its just day to day, i always seem to be struggling with it.. hard.

First of all what pill are you taking and how much panadol are you taking a day?
You should talk to your doctor about NSAID's if surgery isn't an option.
Since you're only taking over the counter pain medication, I'd suggest taking something different. You'd be better off with merysendol or nurofen plus even. As far as I'm aware panadol is only 500mg of paracetamol, I don't believe it's mostly aimed at headaches and fever.

As far as the emotional side, it gets easier in a way but for a long time I wasn't alright.
My family although they don't understand have been supportive.
My partner, Nick has been amazing through this and I don't know what I would have done without him. He makes me hot water bottles, goes to get my prescriptions and deals with my whinging and mood swings.

To give you an idea, I've had issues with my periods pretty much since I had them. I ended up getting diagnosed with pcos and endometriosis.
I didn't have much of a cycle if I was lucky, I'd have a period twice a year and when I did have them they'd last 6 weeks. I was told it was just my hormones adjusting.
I had my first surgery for diagnosis/removal on the 8th of May. My pain hasn't reduced, if anything it's gotten worse. I've made an appointment to see my gyno on the 8th of July to hopefully get another surgery organized. Medicaiton wise: Tramadol 400mg SR, Yasmin 25mg (iirc, could be 30mg) and depending on the time of the month I'll also take mersyendol and voltaron. Even with all the medication I take, I still find the pain to be awful, I get sharp shooting pains in my pelvis that can debilitate me within seconds.

I honestly hope it get's better for you, as I could not wish this suffering on my worst enemy.


ninja edit: brick o text.

[lmkk]

Im taking about 9 panadol rapids a day. i find that normal panadol doesnt make any difference, but sometimes rapids dont do anything either. But generally it does take the edge off the pain. I take 3 at a time, and usually 3 times through the day.. I am also taking the contraceptive pill, my doctor told me to take the whole month, but i have been skipping the sugar pills, becasue they make the pain worse. I am also taking one called diabex a day, which is a diabetes tablet, but i dont have diabetes, its to help with the insulan, my body is absorbing too much.

I was taking panadeine, but i found it made it worse, and looking into it, i read somewhere that codeine will inflame the pain. I have just looked into taking mersyndol but id need to get advice from a doctor, because of asthma. i know i cant take nurofen, as it flares up my asthma which i dont take anything for usually, but nurofen brings on attacks.
Im interested to see about the surgery, ill try anything that will help. But because im still waiting to see a specialist, its the in between time. Im also thinking about seeing an acupunturist, or any other alternative treatments.
Thankyou for giving me the names of those other medications, ill write them down and whenever i finally see the gyno ill take it with me and see what might work for me. You're right about the pain, i would never ever wish it on anybody. I have had a baby, but this is so much worse. it doesnt hurt as much, but its a constant pain, and there is no relief. And at the end of it theres no reward, it just sticks around!
I really hope all goes well for you, that another surgery will eliminate it for you.

[*LittleMissSummer*]

Firstly i want to say thank you for sharing your story. Secondly i think you are such a strong person, i know if i was going through the same thing i wouldnt be able to keep it together.

I found out 2 weeks ago (if that) that i have PCOS that was after years of doctors telling me exactly what they told you, my doctor at the moment told me that most GPs dont really understand much about "lady issues" so that is why its taken 4 years to be finally diagnosed with it.... i am a wreck, whenever i think about it i start to well up i fight with my partner constantly i am sick of hearing that ill be fine that we will have kids. I will always have it, its not about having children yes i so badly want to have a family but i want to be normal, i want to be able to have sex and fall pregnant, i want to have my periods every month, i dont want to have PMS so badly i have to stay in bed the entire time i have my period because the cramps are unbearable, i dont like being moody or being over emotional, he thinks i can control it but honestly i cant i fly off the handle for no reason and i feel so terrible so when im finished ranting i spend the next hour bawling my eyes out.

Congratulations on your little girl. I hate it when doctors say that you cant have children, i know of so many ladies who had that told them and they all have kids. They should say that having children may be difficult.

I am so sorry that you are having to go through what you are, i am also mad that even your doctor isnt being supportive he should be helping you not judging you how dare he call you a liar. Its always males who are the ones who judge.

I have found talking to other ladies in the same situation to be helpful. I am still really upset about it but i am determined to not let it get the better of me.

[lmkk]

Hey =)

i dont feel like i am keeping it together, feels like i am failing..But everyday i get up and try and i think thats the important thing for now. And besides, i dont know what else to do. It seems no doctors can help. Im going to see ANOTHER gp on wednesday to see if anything might help with the pain, and if that doctor cant help, im going to insist that he help me somehow.. whether he refers me on or does something experimental.. lol im gonna be as polite but firm about it as i can!
And tomorrow i plan on calling the specialist who seems to be "too busy", for myself, instead of relying on the gp who referred me. If they tell me i cant have an appointment its not gonna hurt, but if i can see her earlier.. well fingers crossed she may have some answers or suggestions.. at least some hope!!

I dont know about you, but it seems ridiculous to me that some doctors dont understand about "lady issues"!!!. I have also heard that, and it makes me pretty mad. Being a gp, they have to know about lady issues so they can do their job!!

Its a very emotional issue, and i am so sorry you have to go through it. I understand completely how it feels to go through it. Although i do have Tilly, but i remember the feeling of not knowing. you feel very helpless and i remember, and even now feel sorry for myself. Its a very easy spiral down.

My dad is the only male who knows, and now, im trying to keep it as quiet as possible. My nanna is conservative, and when i got my period at 11 she told me i was too young to get it and she didnt want to hear about it. I hardly think she's going to want to discuss this any further. When i told her and my aunty i had pcos, they told me "lose weight and you'll be right." And thats when my dad jumped in saying "and you should see her, looks like a sick dog when shes "got pains.." and does his "sick katrina" act.. and my aunty jumps in and tells everyone how you get no pain when you have pcos.. which shes never had btw...
so i didnt even mention the endo, but that made me say oh yeah..ill see ya later!... and now avoid the subject with them all together.

Do you have any support? I find the best support has been talking to other woman who've had or have these issues.. its good to know that someone knows what you're going through and doesnt think of you as whinging or get frustrated with you when you just need someone to listen.