18years old with endo.. cant cope anymore.

[Whammy]

I have always had problems with periods and pain since I was 13, the doctors just said it was bad periods and started me of the depro injection. Im now 18 and got diagnosed with endometriosis last year, ive had the depro, implant and coil. I bleed on all of these and was in pain constantly. I had one operation to remove dead cells off my cervixs which kept bursting and was causing the bleeding. Ive had my lap last year just after my 18th birthday, they said I had endometriosis which was spread basically everywhere, it has now spread to my bladder and bowels. I am currently off work, I cant cope with the pain anymore. I am on naproxen, solpadol and amertriptalin (not sure on spellings) the docs cant put me on anything else except morphine. The doctors have tried to get in touch with my gynaecologist but he hasnt got in touch. Every day I am going back crying and begging them to help.

I am getting so low with it, I can't work properly. People keep telling me to deal with it and I just feel like im letting everyone down or just wasting peoples time. I just need some advice/talk too.

Thank you x

[missee]

first thing its not easy to just "deal with endo" so wen people make comments like this dont take them to heart you cannot sympathise wth endo if you havent got it...the problem we face as well is that on the out side we look fine....people dont get that its becos we have a handful of pills for breakfast...dinner and tea...im not sure morphines your next shot...you could try codeine...cocodamol...tramadol...mefamic acid...naristerone and im sure some of the more mature ladies on here could real more and better meds off ...you have a few more options....your doing the right thing by try to contact your gynae......i can relate to you in some ways ive only been diagnosed a year and this shit is hard ...and there are days wen i wake up and wish i hadnt but you have to realise this isnt going any were u need to come to terms with that..and its very scary.....i once got told "we all have bad days,make sure you enjoy the good ones" dry your tears and face this head on at least then u have control of something..and ur not on ur own.xxxxxx

[missee]

first thing its not easy to just "deal with endo" so wen people make comments like this dont take them to heart you cannot sympathise wth endo if you havent got it...the problem we face as well is that on the out side we look fine....people dont get that its becos we have a handful of pills for breakfast...dinner and tea...im not sure morphines your next shot...you could try codeine...cocodamol...tramadol...mefamic acid...naristerone and im sure some of the more mature ladies on here could real more and better meds off ...you have a few more options....your doing the right thing by try to contact your gynae......i can relate to you in some ways ive only been diagnosed a year and this shit is hard ...and there are days wen i wake up and wish i hadnt but you have to realise this isnt going any were u need to come to terms with that..and its very scary.....i once got told "we all have bad days,make sure you enjoy the good ones" dry your tears and face this head on at least then u have control of something..and ur not on ur own.xxxxxx

[roann in reply to missee]

good advice..when i have terrible pains i would hold it in and act as if it's ok and no one knows but me and trust me as soon as i am out of the eyes of the public i scream..sometimes i don't tell others when i am in pain because they think i fake it but weather they think i am, faking it or not i have to still deal with the pain..

[crystal_willow]

Hello Whammy,

I'm sorry you are having such a rough time. I also felt really low when I was newly diagnosed, it is perfectly understandable and you need time to grieve. I believe that any diagnosis of a long term, life affecting illness comes with a grieving process.

It can help a little to get familiar with the process as this can help you to see that it is a process and you can and will feel better with time

en.wikipedia.org/wiki/K%C3%...

It sounds like you know yourself well enough to know when you could do with some support and there are times we need more than time to process a situation like this.

I got myself some counseling after I was diagnosed and found it really useful. Perhaps some talking therapy will be useful for you too. You can ask your GP to refer you to talking therapies for support, there is counseling and CBT (cognitive behavioral therapy) both available on the NHS.

Please keep talking to us here

You are not alone

Crystal x

[Dani-Leigh]

Hi Hun I got diagnosed when I was 18 too and felt exactly the same. I'm now 21 and have learnt to accept its going to be there for a long time and I try to look at ways to manage this rather than what I used to do which is block it out or not think about options just cry all the time. I work for a psychological therapy company for CBT and it could help you to start looking at positives rather than negatives (CBT is about changing the way you think to help manage your thoughts etc). Also depending if you want kids anytime soon you could also ask to be put on norethisterone constant for a year which stops your periods comoletley which reduces the pain significantly. I was on this for a year and this is what picked me up out of my crying upset stage because it stopped the majority of my issues if that makes sense. I think In your case if you are young and you don't want kids for a long time then keep to Meds that help with your periods like depo injection and other contraceptives because they help.

Hope this helps

X

[Whammy]

Thank you, its so nice to know that im not on my own, just nice to be lisetened to and understoon :)) feeling alot better today, think meds are kicking in!! I got my appointment through to see my gynaecologist on the 8th may, I am getting rather alot of discharge which is worrying me?? so will see what he has got to say. I do want children, but for some reason I feel like I wont be able to have kids, ive alway thought that I wouldnt be able to have children. I am getting in touch with someone to talk about everything as I was on anti-depressants since I was 12. I think im getting used to having my low days now, hopefully have more good days! Thankyou again xxxxxxxx

[Whammy]

Well..

Mother nature kicked In Sunday, I started my period; (very heavy)first one since finished my zoldek (not sure of spelling) and it will be my first proper period in two years. Well the pain was horrid, but I went to work as I just can't afford to have time off. Got to work and nobody spoke to me, my boss ignored me unless she wanted me to carry something or do anything that put me in more pain, I explained to her that I will just do the washing up. An hour or so later she sat down and said that I was `unfit to work and I to go and not to come in tomorrow.I don't know where I stand anymore can anyone help\advise?

Thank you

Hannah xx

[jens2]

see a specialist who will be able to help hopefully

[Whammy]

Hi just to let you I am being referred to Oxford specialists, got to have another lap and laser?

Anybody know about laser and if it helps?

Xx

[jens2]

laser isn't the best surgery; find a specialist who performs excision surgery, not laser surgery.

[jlkjennie]

Hi I read your post and I'm so sorry you poor thing. It breaks my heart to hear sufferers as young as you. Im 36 and my journey started when I was 15 bad cycles couldn't take the pill caused terrible anxiety panic attacks. but the endo came on in my 30s. Itso really hard because the endo is fed by hormones imbalances have u tried changing your diet to limit meat etc.. it must be hard as you in pain I'm due for injections next week if it works they will do full hysterectomy ovary removal too but you are so young there must be something they can do . Did they excise all the endo. Keep strong xx

[jlkjennie]

Keep going back to your gynocoligist I read about a girl on BBC she had zoladex but because symptoms were returing after few months on injections they changed her to having injections differently I think not monthly. Dont give up until they help you its not fair you are going through this at 18.xx