Why produce this site?

This site is produced to help everyone around the world understand what Endometriosis is and to increase world wide awareness about the disease. This site is also designed to help offer support to those with the disease and those who are affected by the disease (partners,spouses and parents etc..) The site was created back in 2001 ish because there was a severe lack of information on endometriosis on the Internet and especially practical information with real viewpoints rather than conjecture by people without endo. Since then the site has grown consistently keeping up with advances in our knowledge and in advances in medicine where possible. Now there are many similar sites, but we hope this site offers the support needed to sufferers and welcome any suggestions on content or advice.

Now as times have moved on we are on the third incarnation of the site – and we are keeping it more up-to-date than ever. Information is a lot easier to find about endometriosis now, but there is still a lack of proper life stories and experiences out there, there is now a lot of opportunistic sites which offer quick fixes for this incurable malady – the latest update of the site is done with an element of hope, as our personal experiences have shown there is life with Endo – and real hope.

– Michael & Arianna

July 26, 2008

Journal Entry March 14, 2006 (Arianna)

Well back from the group meeting – was like going to uni – the whole lecture hall was packed!

It was a very informative meeting and as soon as I get my next period I need to ring for my day 2 blood test. I’m a tad confused though because they said that if you get your period after 10am then it’s not considered day 1 or something like that, but shouldn’t matter, I usually have mine before then.

They talked about how things work there and the cycles and possible problems. There was a nurse there who spoke about the nursing staff, and the counsellors and an embryologist as well as one of the consultants.

They focused on the long cycle of treatment which doesn’t really apply to me as the consultant told me that I’d be doing a short cycle due to the drugs that they’d be using and my prior reaction to them, but we will wait and see.

All in all it was a very good meeting.

DH will have to do a sperm sample as he’s not had one done before at this hospital. Not sure if I need a smear test as I had one in 2003 and I know my 3 years is up in Dec of this year, but we shall see.

I’m going to put everything together into a plastic folder to take with us. I’ve been tracking my periods for well hmm let me count…..*pause while counts on fingers*…13 years now so I will be putting the last 2 years or so into a spreadsheet and putting it in the file. The consultant already has hundreds of charts I’ve filled out. LOL

My only concern is that because I don’t know when my periods are due, this whole “you take this drug 1 week before your period is due” won’t work – but we’ll see what the consultant says.

Hope everyone is okay!

Arianna

March 14, 2006

Journal Entry March 13th, 2006 (Arianna)

Just thought I’d post to say Hi and do a check in.

We have our IVF group meeting tomorrow night and I’m getting rather nervous about all of it. I’m so afraid of the drugs as I’ve had them before and they turned me into a monster and I’ve got permanent damage from them – so am really scared that the same thing will happen again and the damage will get worse. Thankfully the consultant is fully aware of my concerns and has promised his support and monitoring of things.
I’m having a hard time coping with not being pregnant yet – but I suppose it’s just a normal aspect of my life really.

Am really busy work wise and am getting very stressed by one of my client’s who is a total tit. He seems to think that I can do my job without giving me access to information that I require and then he argues with me when I tell him that I can’t do it if he doesn’t give me the information to do the job!

I’m attempting to get into shape (Katherine you are a great inspiration cause you look totally fab and remind me of how I looked when I was younger) but am not being very successful as my knee is bothering me when I do a lot of walking (it’s a very old injury that probably never healed properly). I’m determined to look fab in my bikini when we go to Spain in May! I’m also trying to drink 2 litres of water a day – but man is it hard! I keep having to run to pee and some days I wonder why I don’t just sit on the dang toilet all day – or connect a hose to it. LOL

I think that’s it. I will do an update tomorrow night or Wednesday after the group meeting thingy.

Hope everyone is okay!!!

*HUGS*
Arianna

March 13, 2006

Arianna and Michael (Arianna) – #5 January 26, 2002

For just over a week now I’ve been suffering from this annoying pain on my left side and lower back that steadily got worse. Not only that but I kept running to the bathroom even if I only drank a thimble full of water. I suspected a kidney infection.

I finally made an appointment with the doctor and I saw her yesterday morning and guess what…I’ve got a kidney infection. I went in, did a urine sample, the receptionist dipped the stick in it and asked if i was expecting my period any day now. I said nope not for another 2 weeks, and she said oh hmm, I said I’m susceptible to high protein levels. The doctor came in, looked at the stick, asked where the pain was, said “Yup you have a kidney infection” She wasn’t happy about me waiting an entire week but she understood why I had done it.
She’s given me a course of Macrobid to take for 7 days. She hopes I won’t have an allergic reaction to this stuff. She also ordered me to drink lots of cranberry juice. I wanted to laugh since that’s what I’d already prescribed for myself. :o)
I guess I’m going to have to not ignore any pain that I do have, especially if I realise it’s not endo pain. Oh well…Live and let Learn as they say.

January 26, 2002

Arianna and Michael (Michael) – #4 January 13th, 2002

Right – Time for another entry – this months difficult period is finally over – seemed to go a bit faster this month…

I think it went faster as I was less involved due to Arianna’s depression with her period this time- it has meant she has been very quiet compared to normal – makes it very hard to know what she is thinking as she becomes very withdrawn – she also snaps a lot – not a big issue for me. However i feel her family bear the brunt of it – especially since my little miss becomes very stubborn in some opinions and hates it when she feels peoeel are intruding on hr space.
Unfortunately I cannot do very much for her at this time – maybe it will improve when she comes over – if not I am sure we can come to some sort of compromise 🙂

She worries about my reaction needlessly really and she tends to worry about coming to england due to all the unknowns we have at the moment – however I believe all will be ok and we will resolve all !!

Thats all for now

Mike

January 13, 2002

Arianna and Michael (Arianna) – #4 January 13th, 2002

Okay well the dreaded period is over…thank god! I’ve still got a bit of pain and such but it’s almost over. Still having some issues with lactating, but right now my biggest concern is that I was a total monster with PMS this time and I’m depressed.

Not quite sure if it’s the endo causing the depression or if it’s cause I’m worried about how my life is going to turn out in regards to when I’ll get to be with Michael permanently, but something sure has me depressed. I’m not as affectionate as I normally am and I can’t seem to get past a few things, I just seem to be throwing myself into my course work and staring at a computer screen. Well I guess that’s enough of this journal entry since it seems to be straying from the endo side of things. Wonder what Michael will post in response to this?

January 4, 2002

Arianna and Michael (Michael) – #1 14th Nov 2001

Well, tonight was not a good night for Arianna, she was in quite a bit of pain….

It started for me around 11:50pm when we started talking over netmeeting, Arianna was crying and I couldn’t help being in another country makes it hard sometimes, she has this searing pain down her left side which happens every month due partially to endometriosis and due to stress and the like with mid-terms and stuff, it is very hard on both herself and me unfortunately, maybe when she is in the country with me I can offer more support and be there for her when I am needed – sometimes it makes you feel a bit helpless though :(. Anyway enough for now – Michael helm

November 14, 2001

Arianna and Michael (Arianna)- #1 November 14th 2001

Seeing as Michael has written his side of the journal, I thought that I should post my side of it.

The pain was really bad when I woke up yesterday morning, after only getting 2 hours sleep Monday night. It kept getting worse through out the day and by the time I went to bed last night it was so bad I was crying and sobbing. It felt like it originated on my left side but then it would spread out until my whole pelvic area seemed to be being attacked with sharp hot knives. There is no other way to describe the pain. It’s like someone is shoving hot, sharp knives into me and twisting them and pulling them out. Sometimes it feels like osmeone is ripping my insides out. Michael is right in saying that it is hard with us being in two different countries. I just hope things do get easier when I move over there.