What do you say now??

[Holleymuzz]

Hi gals. Firstly I would like to send my love to each and every one of you wether your fighting for a diagnosis, some one to listen to you or the daily hell that is it disease.

I had an exploratory lap in ‘16 and was diagnosed with ‘very mild’ endo on bowel bladder and pod. Was told it’s not the cause of my pain it’s too small, that they burnt it away and I should have my bowel looked at AGAIN as it’s not a gynea issue, told to go on marina and discharged back to gp. I had already tried the coil and suffered heavy bleeding and constant pain. My gp took the side of the consultant, also told me she had this surgery for endo and hasn’t had a problem for many years. So anyway I continue with the pill I’m on because it gives less symptoms. I felt ok-ish for about 3-4 months. Then the pain and symptoms really took it up a few notches. Slowly started to lose the urge to have a bm, although it was soft or even diarrhoea my bowel would just hold on no matter how hard I pushed or how many laxatives I had, so I had to use suppositories, and now I have to use them daily to open my bowels. I would have pain before, during and after going to the toilet. Constant dull ache in my pelvic area sometimes to the point I would mildly overdose on painkillers just to knock me out to get away from the pain. It was spreading up my back down my legs. Sex? Well if and when I could get in the mood and well you know.. lay back and think of Britain.. afterwards I would need a hot water bottle and painkillers... stat!! So I ended up in ane one night and a gp who specialises or has an interest in gynea recommended I ask to be seen at gynea clinic that was about 1.5 away but she had worked there and they are brilliant. So after 6 months I have the appointment, first of all the consultant read my notes and showed me that after my last operation I had they put that I had endometriosis and was given a complete hysterectomy!! So not taking my word for it obviously they did an examination and indeed felt all my repo organs still very much present! After months of scans and mri’s it all came back clear. They said they will do another diagnostic lap.. haven’t I already been diagnosed tho? Anyway last sat I went in for my lap they had me down as last on the list but decided to change me to first because my op just wasn’t going to be long.. 3 and a half hours later I wake up in recovery.. I was told I was being kept in over night, I had a catheter that wasn’t coming out till morning. I remember thinking to myself I don’t remember feeling like this after my last lap, this time I actually felt like I had been abused my a saw. So gradually through the night on heavy painkillers I get the feeling it wasn’t just mild endo I was dealing with. I was told the next day that although the endo was ‘superficial ‘ it was on my rectum, rectovaginal, on my tubes to my kidneys (forgot the name) and pretty much all over my pelvic wall both sides, my right ovary had twisted and stuck to its own tube, my uterus was seen to be bulky and biopsy was taken. My consultant exercised all of it.

So now I know I wasn’t going mad. That the people who diagnosed me originally were in my opinion mediocre gynaecologist who need their skills and knowledge tested!

But my family n friends say.. so now you have the op it’s over right? No more pain? No more issues? All while knowing this disease has no cure.. what do I say to them? What do I say to myself? Thank you if you managed to read this all.. any advice would be really appreciated x

[Char411]

I really hope that this op will bring you some much needed pain relief. I find that endometriosis is so often dismissed.... during diagnosis it’s always oh it’s unlikely to cause this symptom or that type of pain then finally after diagnosis it’s played down, then you’re just left not knowing what to do or expect next, especially given there’s no cure. I had endo removed in May this year and whilst it has improved certain symptoms (no more passing menstrual blood through my rectum and my leg is no longer numb) I still have plenty of others symptoms and pain, and can feel other symptoms creeping back already like pain during and after a bowel movement. Like yourself I have really struggled with what to say to people since my lap that assume it’s now all better and that I’m pain free. I wish I had something more positive to say to you. America seems much more advanced and open about endometriosis but seems like a lot of our gynaecologists don’t really recognise it as the huge problem it is for so many of us. Sorry for the rant and hope you’re recovering well xxx

[endopains]

My experience was once I'd had it excised I did feel better... until it grew back again. The amount of time this lasted grew shorter and shorter as it grew back quicker and quicker.

I would ditch the pill - you're feeding your endo if it's got oestrogen in it. I like the implant. Yes, I've put on weight and have no sex drive etc BUT it reduces my bleeding. I've tried all the pills and the coil and it is the least objectionable for me. Plus if it doesn't work for you just take it out and you're back to normal within a week.

Just be honest with friends and family. That's what I do. They roll their eyes and get bored of it but what else can you do?

[Holleymuzz in reply to endopains]

Iv had the implant, it grew me a lovely cystic tumour that was growing in to my abdomen quickly. Not allowed the depo, I have other medical problems so not allowed lupron. I’m on cerezet. X