So fed up guys-how much can we be expected to take?!

[emmaquinny]

So, following on from my middle of the night post between waves of agony passing blood and blood clots in my urine, I’m no further forward. The dip test they did on Saturday morning ‘lit up’ for everything, including infection markers so I was given antibiotics. 3days worth. I’m still in pain (more than usual) and I’ve just got back from the dr having been given a further 4 days antibiotics, because I’m still in pain with it, but there is no more blood and the sample I took today tested clear. Still waiting to hear if the sample that was sent away had confirmed infection. In the meantime I’m in a flare, absolutely sick of this sh*t, my Gyne’s secretary was going to try and fit me in on his next lists and let me know last week but never did and now she’s off, seemingly nobody else can help me. I’ve been waiting for over 18 weeks since I changed over to him as a specialist, before that I was waiting for general gyne who I had no confidence in, and before that I was trying various contraceptives etc to see if they helped. And in the meantime I’m in a massive amount of pain with every cycle, it’s effecting my life, my work, my family.

Nobody understands quite like you guys do!

Rant over i clearly needed to get it off my chest. Any words of wisdom accepted as always ❤️

[HellyLlewelly]

Really sorry you got mucked around and have no firm appointment Emma.

Are you still taking the pregabalin for pain, I read your past posts to refresh myself on your case.

I asked for this (Lyrica) and was knocked back by my GP last week. Im in such huge hip/ back pain and fear my endometriosis is returned to my bowel 7 months post bowel shave.

He attributed it to tabloid case of addictive nature and also can change ones personality?

Gabepentin just made me eat and take ibuprofen and codein on top of.

I have felt almost suicidal in the ladt month, pushed to drink ontop of lainkillers just to get about my home and do the bending and stretching to cater to my childs needs.

I have felt hopeless and like I spent 5k of our money on a pointless hysterectomy with still considerable life altering pain.

Ive been tested beyond my limits.

I really really put my arms out to virtual hug you, still going through these painful cyclical bleeds and you must be in DESPAIR as I was. I think a few times I prayed to die and actually said labour was easier on pain.

I know these dark moments are fleeting but Ive almost posted "I cant go on" or such a post.

I find comfort in strangers as they are fellow sufferers.

I have had a hysterectomy yes but still have bowel issues and so many questions.

I help people on here when I can.

We only have eachother afterall.

Lots of tlc to you..

Helly

X.

[emmaquinny in reply to HellyLlewelly]

I think I clicked a general reply instead of directly to you 🤦🏼‍♀️

[emmaquinny]

Helly, Thank you so much for taking the time to reply. I was beginning to think there was nobody there either! 🤦🏼‍♀️ this does get you very depressed. I am still taking the Pregabalin. I think it does help to a degree, I mainly get the abdominal/hip/back pain during my monthly ‘flare’ but this seems to be more intense and lasting longer of late. I still take the codeine on top at times like this.

I’m so sorry that you’ve spent all that money and have had no let up, and I absolutely relate to how this makes you feel. I honestly think if we felt listened to, and like someone was trying to do something it would help.

I’m lucky in that the coil has stopped my bleeding as that was very extreme. I’m concerned that this recent step up to bleeding from my bladder as well as bladder pain will be part of my cycle- the hospital messed up with the sample I sent and received it but didn’t test it. It could still be an infection but I’m unlikely to know now unless it happens next month. And a couple of days later my monthly bowel issues started, practically turning themselves inside out with diarrhoea and pain so bad I vomited. What a delightful discussion! And all this time I still don’t know if this is endometriosis, something else, or in my head! I feel bad for my family having to put up with me like this, and for my colleagues and pupils at school where I really need to be. Thank you again for your time and concern. I hope that you get some answers soon too xxxx

[HellyLlewelly in reply to emmaquinny]

I dont think it is in your head at all .

My Dr has suggested the elimination condition fibromyalgia, I was a bit annoyed that he did as he said it can begin with a trauma event.

Its like my surgery for endometriosis and the fact that it was found means nothing. Like it couldn't be the cause of my pain as its just a trivial wee thing, a womans condition, couldn't possibly cause chronic pain eh!

So now its a trauma related pain, ie, in your psyche, in your head!

Endo is a bitch, pure and simple.

Im wondering even post hysterectomy should I be on prostrap or the other injection as I hear these are meant to stop the endometrial cell growth.

Im at the point on trying something fearing whats inside me is doing enough damage.

Ive had a bout of bowel activity associated with my past cycles (dihorrea) this month and now the feeling of pain without a bleed at the time my period would be due.

Emma what kind of relief did you notice the Lyrica give you, instant or taking a while to work.

I was sent home yesterday with Lidocaine pain patch (doinf 0 for me) and a muscle relaxant (methocarbamol) not feeling much off it either to be honest and I took 2 x 1500mg of it today with the same last night.

Drowning in pain here and have lost all motivation.

On a new antidepressant Fluoxetine from today and just riding it out as feeling ropey.

Helly.

X

[emmaquinny]

When I first started taking the pregabalin I felt really happy for no apparent reason, which was nice and also bizarre! I would say that I felt a gradual help from them, as I increased my dose, but it’s now either not working as well, or I would be in even more of a world of pain! I now have a date for my laparoscopy though, 28th November, so hopefully some answers!

I got an appointment for a cystoscopy today the day before, I’m not sure if they will still do them so close together so I will check with gyne tomorrow. The cystoscopy is a local anaesthetic not general so hopefully get both sorted! Xxx