Overwhelming and emotional day

[Nikki84]

Hi ladies, I have not posted in a long time but thought I would share my news with you ladies, this is a bit of a long one so please bear with me, bit of background first, about 18months ago while waiting for surgery to diagnose my endo I started to loose the sensation at the top of my left leg, within a few days I had lost full sensation in my pelvis and the tops of both my legs, I also lost total control over my bodily functions, this was a very scary time for me, I spent two months in hospital were they did every test possible and when they could not find a reason I was treated so badly I wouldn’t wish it on my worst nightmare, because they couldn’t find a reason they told me I had a functional disorder which was not my fault and I cannot control it but I would have a hard time getting people to believe me, from this I was put through utter hell and then dumped in a rehab unit full of OAP’s, I was still treated like **** by all doctors because they thought it was in my head and not to mention at the same time I was in so much pain I was screaming, considering this was in all in my head I quite clearly enjoyed *wetting* and *soiling* myself, after a month I was discharged from the rehab place still in a wheelchair with no control, were they left my family to look after me, I was left for a year living on my sofa in my living room using a commode because I could not get up my stairs, I lost my job which I loved because I was ill for so long, I then had a massive breakdown and tried to kill myself 3 times because I could not cope with the fact I could be stuck like this and what it was doing to my husband and family, so fast forward 18 month and 3 hospital admissions to a syc hospital, my house has been adapted for me, they have finally realised it’s not in my head and given me a wheelchair so I can get about and no longer be trapped in my living room, they have me on all kinds of pain medication including morphine and now anti depressants because of course if doctors keep telling you, you are depressed when you are not just because they can’t find the reason for the loss of feeling, of course you then become depressed, so here is the biggie

TODAY I HAVE BEEN CRYING ALL DAY, NOT BECAUSE I AM SAD BUT THROUGH RELEAF, TODAY I WAS TOLD THAT EVERYTHING I HAVE BEEN THROUGH THE LAST 18 MONTHS IS NOT IN MY HEAD BUT INFACT ALL BECAUSE OF MY ENDOMETRIOSIS, THATS RIGHT I HAVE IT IN BLACK AND WHITE THAT MY PARALYSES IS CAUSED BY ENDOMETRIOSIS!!!!!

I was diagnosed early this year from stage 4 endometriosis and I am now waiting for major surgery and will loose part of my bowl and have a bag fitted for at least 3 months.

YOU HAVE NO IDEA THE HELL I HAVE BEEN PUT THROUGH BUT TO HEAR SOMEONE SAY ACTUALLY YOU ARE RIGHT, THE EMOTION HAS BEEN UNREAL TO THE POINT I AM STILL CRYING NOW WRITING THIS, TO THINK A FEW MONTH AGO MY HUSBAND AND FAMILY COULD OF BEEN PLANNING MY FUNERAL ALL BECAUSE DOCTORS THINK THEY HAVE ALL THE ANSWERS.

PLEASE PLEASE LADIES I CANT STRESS ENOUGH YOU KNOW YOUR OWN BODY BETTER THAT ANY DOCTOR SO PLEASE DONT GIVE UP LIKE I NEARLY DID,

Sorry for the long post, if you still with me up to this point, thank you 🙏

[Jaas1]

Your story is so admiring, reading through it I welled up myself. I can't believe how much you have gone through and even though we are strangers, I am so proud of you! WELL DONE!!!

[Jaas1]

Can I just also ask...I too get pain at the top of my thighs (almost like a dull ache after getting initial pain) and it restricts my moving sometimes although it hasn't got to the stage of me loosing sensation. Is this how you started off and how long down the line did you loose sensation?

[Nikki84 in reply to Jaas1]

Thanks, I lost the sensation with in a few weeks of it advancing, I was getting regular scans because I was getting private fertility treatment, I had a scan 4 weeks before which was clear and 4 weeks later it was so advanced it showed up really clear on the scan, within a few weeks after that it started with a patch at the side of my leg and then spread, I had Dull aching every period I had from a kid, I think that is normal, please don’t worry, it is so rare what happened to me that doctors have never heard of it happing before x