Update after consultant.

[Charlie877]

Heya. I haven't posted in a while. I'd been suffering really bad again so went quiet. it took a few weeks constantly at the doctors and at trip to out of ours and then i was finally prescribed morphine on top of dihydrocodien, lidocaine patches and my monthly decapeptyl injections (I took the hormones replacement for a week and and half and it seemed to make things worse so stopped it and just an dealing with the full symptoms of menopause).

Anyways I was finally prescribed the only thing I hadn't tried and it's been great and ive been able to really control my pain and have some form of normality. Was told this would be reviewed at my next appointment with the BSGE doc which was today.

So right now at the moment the facts are as follows:

1. Endo pain is still a daily occurrence and i still require a selection of pain meds to try and get through the day.

2. To simplify as best I can in feel like the injections (ive had 3 out of 6 monthly jags) have improved my pain level by around 15%

3. I'm bleeding after sex could be related to having the coil fitted Oct 2016

4. I've had 5 of the worst migrains in my whole life since starting the injections.

5. Morphine is the only drug that so far relieves the pain 100%

6. Started taking omega 3s and doubled the recommended does and there is already signs that it helps in managing how pain full my daily flares are.

7. Still having unbearable pain when opening my bowels and after eating food.

I asked for them to open me up and look at my bowels as I'm certain there is adhesions and other nasties there but he said as I only had the lap in Aug last year they wouldn't want to open me up and something go wrong as they would get the blame. I explained how much I want everything out because in my head i feel if they take it all away then the pain goes but he said its not the case. All i really want is more than 1 week of completely pain free. It's the most ive had in 2 1/2 years apart from that it's been all day every day. They have advised i go for an MRI to look at the bowel and then they will discuss my results at a meeting they have every fortnight. I hope they see what i feel is at times so unbearable. I'm confident they will because he did say the lap doesn't always show adhesions around the bowels and that's where the pain is concentrated to.

So I can be waiting 6-8 weeks for the MRI and ten days for the results to go to BSGE docs and then the meeting and then it's back to discuss the findings. In the meantime ive been prescribed pregabalin which I've never heard of and wonder if your made it this far have you had any experience on this drug?

One this that has been getting me down is thinking about the long term affect all these different drugs for treatment and pain management will have on me in say ten years time. I'm scared ill be dealing with side affects of all these drugs later in life adding more problems to the mix. What can you do though? Refuse treatment and not be seen to be trying?

I'm still working out if today was good or could have been better. I hope over the next couple months the rest of the injections, coil and pregabalin help so I can cut down on all the pain meds. I don't think it will but positive thinking and all that jazz!

Hope if your reading this you are well and today has been a good day.

✌✌

[amy-28]

Hi Charlie, I think today was good at least you are now under who you need to be and getting somewhere. I have it on my bowel and really bad but mine didn't show on my lap but it did my MRI I have a painful bottom ha sorry and a lot of pressure there. I know what you mean about the meds I'm the same I'm 28 and on suck strong meds but if I don't the pain is too much so for now it seems the better option! So sorry you have been suffering so bad with it lately it's easy for it to get you down and get on top of you I know only to well! Best of luck with your MRI xxx

[Charlie877 in reply to amy-28]

Thanks for your reply. Sorry to hear you are having similar troubles. I hope you are on the path to managing your symptoms. May I ask how long you've had your bowel symptoms for? On top of all the usual symptoms my bowels started playing up about 6 years ago to the point where I was like I need to see a gp about this. I wasn't even aware of Endo and all it's glory so was misdiagnosed until after my lap. Anyways it started off every once in a blue moon, then one a month and years down the line it is now daily as soon as my bowels are doing something I'm in pain.

I hope this new change of meds and MRI brings a more positive couple of months. It's always nice to speak to someone going though similar experiences and hope you had a nice weekend. Xx

[amy-28 in reply to Charlie877]

Hi no I don't mind you asking at all my bowels started playing up about 5 years ago went to the gp loads as just kept getting worse and cramps more painful! Was having long bouts off work due to it for 4 years just kept saying I had ibs then I started bleeding inbetween periods last jan and found out I had an endometrioma cyst on my ovary then my lap confirmed endo and the specialist did the MRI as he said I never had ibs has been endo on bowel all along! Xxx