Please help me!!

[Danni1608]

Hi everyone,

Firstly I'm new to this website so wanna say how helpful reading things on here has been and also wanna apologise if I'm repeating anything anyone has written previously but I'm struggling at the mo and cud do with some advice/suggestions from anyone who can help. I'm 26 and 16 months ago I had a lap to remove some endo, last summer I started gettin the familiar symptoms again and in November decided I cudn't ignore it anymore so went to my gp, since then I've been back and forth to the hospital and my gp, I'm taking MST, paracetamol, codeine and naproxen daily and also have oramorph at home for when I need it. I've been told my endo is back on the left side and I have a blood filled cyst on the right ovary. I've been taking the pill and have been admitted to hospital twice since Christmas supposedly waiting for another lap and then been discharged. I saw the consultant again yesterday as an outpatient and he's now told me to take the pill continuously for 3 months and then have a week off and then take it for another 3 months solid. He's organising another scan for me and then wants to see me after that but doesn't want to operate. The pill doesn't seem to have helped and I hate takin this many painkillers, I've had to cut down from 38 hour weeks at work to 16 hours cuz I can't cope but now I'm struggling to pay bills, my partner has been sleeping on the sofa for the last 4 months cuz I have trouble sleeping and so end up keeping him awake too. This is horrid and ruining every aspect of my life. My partner is bein great but I'm so fed up with everything and am feeling like the hospital are just gonna keep passing me to different people. Apparently I only had a small ish patch of endo last time so they don't want to operate cuz they're assuming it's a small amount again and they're referring me to the pain clinic, I don't want more tablets, I want it removed. How do I get someone to listen to me?? I really can't keep goin like this, I need some help....please. I'm sorry for the rambling rant. I hope someone can help me.

Danni x

[LauraLou1983]

Danni,

Sorry to hear bout your pain and suffering. I was very much like you with the pain and also took oramorph and that helped and was getting addicted to it so had to stop taking. Likely the pain died down so to speak. I had to see the pain team also they gave me Oramorph, tramadol and gabapentin to help with the pain.

I was referred to Arrowe park as when I had my second laps the endo had got worse the consultant at my local hospital couldn't do a lot so did the best thing and I went to the Arrow Park. I had the marina coil fitted and I know it has helped and yeah I do get the pain in my side but not as bad as I used to but I know the coil doesn't agree with everyone.

My mum had to fight so hard to get me to see the doctors after I kept having to go in and out of hospital.

I personally would prefer to have a broken bone as everyone can see the cast but with endo no one can see it and just thinks you are fine when really you and everyone who has ever suffered from it knows your not at all.

Have you tried nurofen plus it has ibuprofen and codeine in it? I was advised to take this as the Oramorph and tramadol are such a strong pain killer

Laura Lou x

[Chrissie66]

Hi Danni, and I'm sorry you're suffering.

The reason the doctors want to go down the drug route first is because with endo, unless it's something that has more serious implications or you are trying to conceive, the very worst 'treatment' for it is surgery. Every time they operate, new scar tissue forms and they are effectively giving the endo something new to feed on. So yes, it will take away the problem in the short term, but it's building up to making the situation very much worse in the long term.

I know from your point of view of wanting something 'done' it doesn't sound as if much is being done, but it does sound as if they are taking the right steps. The only thing that is a bit odd is the cyst; usually they won't just leave that sort of thing, but as you've said they're arranging another scan so I'm guessing that they'll make a final decision based on that.

I know it's rubbish when you're in so much discomfort but it does sound as if they are looking after you. Unfortunately with this disease there just isn't a quick fix for anything

C xxx

[Danni1608]

Thanks guys, I've had both coils in the past but didn't get on with them. Came off all meds last summer cuz we were trying for a baby but now all that's on hold again. Havin a really shitty few days ?? just been signed off work for a week again. I'm trying to cut down on caffeine, dairy and alcohol cuz apparently that helps some people. I've used a TENs machine which helped a bit but not in the week building up to my period. I'm trying anything I can and I know there isn't a magic wand to be waved, I'm just feelin so alone and depressed about the whole situation at the mo, I keep re-playing my appointment with the consultant in my head and he really didn't ask me anything, he didn't ask how the pain has been, if I wanted kids, where the pain was, what I wanted or even give me a choice of anything, he just told me I was gonna have another scan in a month so they cud compare it to my last scan 2 months ago and that he'd see me after that and during the meantime to take the pill for 3 months with no break. I waited 2 months for the appointment and was admitted to hospital twice in that time. I guess I just wanted to get a bit more from the appointment. I'm sure there are loads of people who have it way worse than me but I just wanna feel like my opinions/feelings are bein listened to cuz I'm not just a bit of meat. This whole situation is so hard and I really dunno where to turn. Laura Lou, yeah ive taken that in the past and it helped a bit but I can't mix it with the tablets I'm on at the mo. Did u find the pain clinic helpful?? I've been referred to them. Chrissie that makes a lot of sense, thank u for takin the time to explain some of that to me. Sorry for ranting, guess I'm feelin sorry for myself at the mo and am feelin alone and like this is never gonna end. I can't keep living like this but at the same time wen I say/think that I feel really bad cuz they said it was only a fairly small patch that they removed last time so I feel that everyone thinks I'm makin a fuss out of nothing. I really hope something can be found even just to reduce the pain so I can get on with my life a bit. Sorry for feelin sorry for myself and moaning.

Danni x

[Chrissie66 in reply to Danni1608]

Sweetheart, you never have to apologise for ranting or feeling sorry for yourself, not that you were - this disease is HORRIBLE because as you know only too well it affects every area of your life and really drags you down.

Before you see your consultant again, after the scan, have a think about all of the questions you want to ask, all of the things that are bothering you, and write them all down. It's easy to get flustered during an actual appointment, the times I've come out and realised that I haven't asked a particular question and it's so frustrating.

Have you seen the book Endometriosis For Dummies? It's a brilliant book in terms of info about endo, but when I am having a bad time of it I find it really comforting to pick it up and realise that I am not alone, and to make sense of it all. It also says in there that you could be absolutely full of endo and have next to no symptoms, or have a tiny patch near a nerve ending that could make your life hell. You're definitely not making a fuss about nothing!

Take care, and lots of love

C xxxx

[Danni1608]

Thank u, ur message has really cheered me up, it's just nice to have people out there who understand, it helps me feel not so alone. That's a really good idea, I can write stuff down as I think about it. No I haven't heard of that book, it might be worth lookin into wen I've been paid. I just hate what this is doin to me and my partner and how much it's affecting everything. I really hope I find the light at the end of the tunnel soon, I just need something to aim for. I hope ur not suffering too much at the mo. I really wudnt wish this on anyone, I hate that cuz people can't see anything they think there's nothing wrong!! Thank god for my manager who can take one look at me and know I'm struggling, I go a lovely shade of grey!! Lol very fetching!!

Danni x