Can't take this much longer

[MeliMoo]

Sorry for the me post, but I'm currently in bed feeling like someone is ripping out my insides and I can't deal with this any more. I just want the pain to stop. Asprin, paracetamol, ibuprofen, even cocodamol don't touch it.

I'm so tired all the time, and miserable as a result, poor hubby and I had a huge row last night over nothing because I'm in such a crappy place right now. We are fine today, but I can't believe how much of an impact this is having on me. I run my own business and it's causing issues with that as I can't work when I'm like this. I can't even get up to go and feed the cat her breakfast at the moment.

I've got my first appointment with the consultant on Friday thank goodness, but it can't come fast enough and I hope to god that he can help with something to manage this because I really think I will loose my marbles completely if it carries on...

[Tboag]

Hi darling, sorry your feeling so crisp, it's a horrid pain to deal with, have you been diagnosed yet or is this your first every gyne appointment?

Please write everything down today while your i bed, make sure you put all your symptoms down how ever little or insignificant they may seam, give with to him and he will then ask questions from it,mother wise if your like me you will come away thinking of things you never said,

Then, go back to your GP, or get a phone consultation today and ask for something stronger, he may give tramadol, or I'm on 20 ml 12 hour release morphing sulphate, still get pain with that too, try hot bags bottles or patches, eat loads fruit and veg,

Hopefully you will get refered for lap and find out for sure what's going on in there,

Good luck and please let us no how you get on Friday.

[MeliMoo in reply to Tboag]

Hi T, thanks for the lovely reply I'm not normally like this but have had a hard few months recently, I think I've had one normal pain free week in the last 6-8, and it's so draining. I've not been diagnosed yet, this is my first consultant appointment, although I've had issues for years :/

I managed to get downstairs now and sort the cat out (she's poorly and needs tablets too bless her!). Took me over half an hour including dashing to the loo, and almost passing out, but she's sorted now. So stupid, the little things just become such a trial don't they

I've been keeping a list of symptoms, so hopefully I'm prepared. I've actually seen this doc before about 3 years ago as he's also an ivf specialist and we had one cycle at his clinic, so I know he's very nice. I might ring my gp about some better pain meds though, I'm barely able to walk today. Normally I'll just try and push through it, but I think I need more help this month..

[Tboag in reply to MeliMoo]

Is it your period that is causing this pain today,

I've been in pain daily since sep and have just been diagnosed sat after my first laparoscopy with endometreosis found and excised from behind uterus and the urs sacral ligament and he sorted my uterus out as he said it was twisted, ?? Never head that before, but he said it was successful, I'll check on that at my follow up, but I've also got adenomyosis, which he feels might be the thing that's causing the most symptoms, so I might not get much relief after my recovery from lap,

What are your symptoms??

[moxyfilms]

Hi,

I'm also off work (since the 10th of Feb) mostly due to the unpredictability of my pain. I really can't manage for a full working day, and some days I can't manage anything at all, so I've been on a sick line this whole time. It's devastating, and boring and lonely, but my employer and I both agree that I need the time and space to look after myself rather than worry about whether or not I can make it to work. I have a very understanding boss, though. I'm aware that not everyone has this gift.

I got advice from a colleague who has been through the wars about pain management. She ended up in a pain clinic (takes forever to get to, probably years) but she has had, in the end, two lidocaine infusions and has been pain free for 6 years. But barring that, obviously, she said she was on a three-pronged approach to actual MANAGEMENT, which I then took to my GP to discuss because I was taking paracetamol and tramadol in huge doeses, and only as needed so I wasn't managing to pre-empt pain and keep on top of it, and unfortunately the tramadol wasn't really doing the trick, nor were any of the easily accessible drugs you're currently taking. What I'm on now, after some trials, is:

1) Lyrica (pregablin) (my dose 75mg 2x daily): my colleague had recommended asking for Gabapentin, but I was given Lyrica instead. It's the same family of drug, designed for epilepsy but does treat systemic nerve pain. The side effects of pregablin over gabapentin seem to state much more pointedly that there might be thoughts of suicide, so obviously there a depressant side effect which I have experenced, but if you and everyone supporting you know that there shouldn't be a problem. This is a drug that takes time to build in your system, and at first I was a drooling zombie. You can apparently start on a lower dose and then build it up to whatever recomended dose you should be at, but just be aware that you'll be dizzy and not yourself at first, unable to drive, and probably a bit of an empty vessel for a week or two but it WILL settle. I went through it and am on the other side and I'm ok.

2) MR Tramadol (modified release for prolonged effect) (my dose: 100mg 2x daily): this is the opiate side of treating the pain, and the long release hopefully allows me to need less of the tramadol. However, when the pain's really bad, I can take a regular 50mg tramadol capsule with paracetamol for the short, sharp burst of pain relief. As long as there's no more than 400mg of tramadol taken in a 24 hour period (including the MR tramadol) then that's ok.

3) Voltarol suppositories (basically solpadiene) (my dose: as needed, up to 3x daily): Sounds horrible, but if you've had surgery and had these anal suppositories you'll know how effective they are. As strong enti-inflammatory drugs are extremely hard on the stomach, to keep from having to take an additional anti-reflux drug (lansoprazol) or an anti-nausea drug (cyclazine, or something like that, can't remember the name) this suppository gets around having to do that to your stomach and its actually absorbed better. If any of your pain is cramping pain, or cyclical, inflamation is probably present so this is a good one to take to treat that. I highly recommend it as part of this management approach.

And that's it, really (that's enough, isn't it?). One to help treat the pain referring all over the place in your nervous system (I normally would be getting crazy referred pain in my back and down my legs, etc), one (or two) to hit the pain on the head, and one to treat the inflammation without upsetting your stomach.

You can talk to your GP about this idea, of a more radical and tiered approach to pain management. I still can't reliably show up to work, and I'm not completely pain free, but I am more comfortable and I'm able to go take the dog out and throw the ball for her while I stand still and get the food shopping done, etc. A tiny, yet important victory.

Please let me know if you have questions about this! I'm not saying this is the right thing, but it's what I'm doing with the guidance and help from my GP. But I had to suggest it to him based on it being recommended me from another endo sister. Otherwise, I don't think he would have thought to get me on a management strategy but just would have thrown me more tramadol and paracetamol on its own.

Good luck, and hang in there xx

[MeliMoo]

T, you poor thing, and here i am moaning about a few weeks, I hope your check up goes ok. X

Thank you for all the information too Moxy, I will make notes of all of that and ask them about it on Friday x

My symptoms seem to be concentrated on the abdomen and bowel area. I've always had heavy, painful periods (was on the pill from age 13) but over the last year I've been getting worsening ibs/food poisoning symptoms every month, which last time lasted for over 3 weeks.

Excuse if this is tmi, but every period starts with brown spotting for a couple of days, then huge gripping tearing cramps throughout, heavy bleeding with clots (sorry!) and then the stomach stuff kicks in and will last weeks after the period has ended. I have to go to the loo about 5 times every morning, often nothing happens, but it just feels better to be in there?! I get days of clammy sweats, then cold shivers all at once, then feel faint and nauseaus. Often I get uncontrollable hiccups, which sometimes get so bad I end up vomiting. My abdomen gets really bloated and tight, that horrid trapped wind feeling, but all over, and I can't have anything touching it. And loads of really really loud gurgling! So embarrassing, I don't go out when it's doing it as it sounds like I'm about to explode, and feels like it too :/ I hardly eat while all this is going on too, which makes me more tired, anything passing through just makes things worse so I stick to liquid foods mainly. But my 'movements' when they do happen are normal, occassionally they are loose, but mostly ok. Which is why my GP finally referred for endo, she thinks it's in my abdomen mimicking IBS.

[Jenf260]

If your not on birth control try taking the herb Wild yam its fantastic for treating Endo naturally and for your pain drink Raspberry leaf tea as often as you need too it works for me I've been using herbs for medicinal purposes for over ten years as doctors refused to give,me surgery I finally got my diagnosis confirmed 5 weeks ago unfortunately my surgeon fitted a coil which I'm not happy about but I'm still drinking my raspberry leaf tea which helps my pain and inflammation far quicker than paracetamol etc also do not take paracetamol as well as the raspberry leaf tea,as prescribed meds interact with herbs. I shall also be praying for you xxx