New girl...

[Bexallina]

Hi everyone, my name is Beck and I am 22 years old. I'm new to this forum and have recently been diagnosed with endo. It's took 7 long years for this diagnosis. It's so nice to know that there is a whole forum of people who offer their support, I've been really struggling with coming to terms with it and figuring out how I'm going to manage my life around it. One of my biggest worries is work. How does everyone manage work around their endo? I'm sorry if my questions sound silly - like I said I am very new to all of this. Thank you!

[aimee22]

Hi Beck. I'm Aimee. I have recently been diagnosed with endo too.And i'm new to this too, i just joined today! I thought i had it bad as i've been back and forth from hospital to hospital and having horrendous symptoms for the past 6 months... but 7 years! Wow. I really feel for you. I can't offer much advice on the work front. I was at university and had a part time job. I have had to drop out of uni because of the time i missed, i just couldn't catch up, and i also lost my part time job. My boss is so lovely and has told me that when everything settles down health wise, there will still be a job for me, but she's had to hire someone else to cover my shifts for the time being, which i completely understand. Do you mind me asking when you got diagnosed? Did you have a laparoscopy? I had mine a few days ago and i'm really struggling with the pain. How long did it take you to recover from it? xxx

[Bexallina]

Hi Aimee! Yes unfortunately I've spent a lot of time in hospital, I've also had reoccurring kidney stones so it was very hard to diagnose and distinguish the pain and symptoms which I think is why it's took so long to get a diagnosis. I had my laparoscopy in march time, which was when they discovered the endo. I think it took me about two weeks to recover fully, but I took it easy for about 3 weeks. I was really bruised for a month put the pain went after about two weeks. I did notice though just recently I've felt like a tugging sensation around my belly button but I've been told this is quite normal to experience! Take lots of rest and watch lots of movies!!! Keep your mind off it as best as you can! And keep topped up on your pills! I hope you recover soon, it's really not a nice experience. Xxx

[aimee22]

Ah thank you. Have they told you what stage you have? I have been told mine is severe stage 3. I now have to wait 3 weeks until i go and see my consultant to discuss the lap in more detail and to work out where we go from here. The surgeon did mention to me that it won't be a case of more surgery to remove any endo, as there is just too much, and that it will most likely be hormone therapy. I just want to go and see my consultant now! I hate waiting. It gives me too much time to think of all the 'what if's' and google it all. I'm having such a hard time getting my head around it all. I just want all my questions answered. Especially regarding babies. Xxxx

[Bexallina]

I'm not too sure to be honest about what stage I'm at. I suffer more with the illness then the actual endo growing if that makes sense. I have a lot of symptoms of it and the endo is growing in my ovaries. I have been told I can have surgery to fix mine, but I've been told it's really risky because of where the endo is growing, especially if I want babies. I've been told to try some new medication for the next 6 months, see how I get on. If it's not helping then I need to really consider surgery...not a decision I want to make at 22, but such is life I suppose! Do you ever have leg cramps? This is something new I've experienced this week and I'm actually struggling to walk. It's absolutely horrible. I feel so useless! Do you no when your appointment is? They're really good, they will do their absolute best to make you as comfortable as possible and help you understand. I'm still coming to terms with it all but I understand it a lot more now which helps! Xxx

[aimee22]

My appointment is on 18th June. So just under three weeks away. I think because i'm still so sore from the lap i can't do much, so i'm expecting it to drag. But it'll come round before i know it. No i don't get any leg cramps, but i do get awful back pain. Bad enough that i can't walk. I've not long turned 23.. when it first came about that i may have endo, a doctor said to me "oh no, it won't be that, you're too young for that". But from doing some research and coming on these forums, i've noticed it seems really common in younger women. I feel like going back to him and saying 'HA, told you so!!'. I've been on Cerazette (don't know if i've spelt that right?!) for just over two months. Have you ever been on this? The point of going on it was to stop my periods but i'm bleeding a couple of times a week. Sometimes just a day of spotting and other times it's 2-3 days of heavy bleeding (sorry if it's TMI!). Was wondering if you experienced bleeding if you were on this pill? Also, if you don't mind me asking, what painkillers are you taking? and do they help? Xxx

[Bexallina]

It will fly by don't worry! You'll feel so much better after going. I've heard it's really common in young girls as well, but unfortunately not many girls realise they have it which I think is really sad. I take a painkiller called mefenamic acid, it's ok, doesn't really do amazing things but I couldn't be without if that makes sense haha. It also helps to reduce the amount of blood that I lose when I'm on my period and for that it is brilliant! I'm currently trying to get a stronger painkiller, but my doctors are putting me on a new pill now, (really sorry no idea what it's called am picking it up today so will let you no!) and they seem to think that along with this pill and the mefenamic acid it will help. Eventually I'll have to have surgery but they really don't want to operate on me at the minute because I'm so young and want children in the future. It's such a horrible illness to have to live with isn't it! And don't worry about giving me TMI, chances of we've all been there and experience pretty similar things on here! I hide away so much of this illness from my friends - I don't want to have to do it anymore. Being poorly is nothing to be ashamed of, my doctors helped me realise that! Xxx

[aimee22]

I'm exactly the same as you regarding hiding it from my friends. Well, all but one - my best friend. She gets the full details! And my partner does too, bless him. Sometimes i feel like because i've not got an open wound that's pouring with blood, people don't think that i'm ill. Especially when i'm having a good day.. where i put on a bit of make-up, get dressed up (which to me is just anything other than pj's!) and go out for a few hours. I kinda want to shout, i am still in pain you know! I have finally been given oramorph to have at home which has been a godsend. It's the only think that i've tried that seems to touch the pain, along with diclofenac suppository's, which i must say, despite the horrible way to get them in to my system, are brilliant. I just worry some times that i'm only 23 and am on a morphine based drug every day. I don't want to become addicted to it or anything! Have you got a blog? I've been reading a few this morning and really want to write one. Trouble is, the ones i've read are so good, mine will be poop in comparison! I do like being on here and talking to other women who know what i'm going through. It's kinda like therapy! Xxx

[Bexallina]

Haha yes boyfriend it's amazing, he's been there through some horrible times with me. I sometimes look at him and wonder why on earth he sticks around. Then he reminds me that us women who suffer with this are so strong! He's he one that's got me through this. He's incredible! Haha do you know what's funny, i was having a clear out of old clothes the other day, and I started on my pyjama box, I have more pyjamas then I do outfits and I am completely fine with that haha!!!! I'll choose comfy any day over a pair of heels!! Hehe! Ahh yes i take the diclofenac as well, it's very good isn't it. You'll be monitored through lovely don't worry, I'm sure they won't let you become addicted. I've not got a blog know, but I'd like to start one also, have you got links to any I can take a read of? Xx

[aimee22 in reply to Bexallina]

Haha i think exactly the same with ny partner! Must be so hard for them seeing us go through all this and not being able to do anything about it. My partner even looked into taking me to see a private specialist but it's si much money i wouldnt let him!

I've actually just started a blog today! Been wanting to for ages and just thought whilst i'm laid up on the sofa recovering after the lap... Why not!! The link is

aimee-mylifeandendo.blogspo...

Please dont laugh!!

I'm teally struggling with this gas pain in my shoulder. I'm drinking peppermint tea like the nurses suggestes but it doesnt want to budge. It's si frustrating!!! Xxx

[Bexallina]

Your blog is really good, you shouldn't doubt yourself so much! It seems a good way to help people understand, especially friends and family. I like your sky dive pictures as well! Looks awesome!

Ahhhh the gas pain is horrible isn't it. You just cannot get comfy after a lap!! I hope you're feeling a little better today? The pill I am starting to take is the cerazette one...I always get nervous taking new tablets, how do you find it?! Xxx