Ugh… yesterday and today were BAAAAD days! Yesterday because I woke up (if you can call being awake most of the night and then having to rise and shine in the morning actually waking up that is!!!) with my hip in so much pain … I have no idea why it was so sore, but it meant no sleep AND incredible pain. It was a good reminder that the last few weeks have actually been quite good weeks EDS pain wise, and I am feeling that maybe the oestrogen is doing something good? I’m not entirely sure and it is hard to tell, but my gut is that it is making a difference, especially since I have been applying it directly to my foot! It comes in a gel and you can put it anywhere on your body except not your boobs, which tells me that the site you put it on makes a difference so why not put it where it is most needed? So I rub my whole LFI foot with it every day and I am pretty sure that it is making a difference. I still can’t walk well or far but I am not in such constant pain in my foot and I THINK that my hips are better too.
But yesterday it was my hip that was just sooooo bad… which complicates things because as I said in my post on “Explain the Pain” …. (https://myheds.wordpress.com/category/explain-the-pain/ )…. it is not so simple as just the ligaments. It is the bursitis, the ovary removal surgery, and the surgery site from eighteen months ago and so on that contribute to the hip pain so it is very complicated.
But it also reminded me that I need to keep pursuing things and get them sorted as soon as I can. The surgery from eighteen months ago was apart from anything else, also a repair of the abdominal muscles which had separated in my pregnancies and the idea was to sew them back together so that I don’t get a hernia later on. But of course I did not have an EDS diagnosis yet, even though the problems he was supposed to be sorting out were in hindsight EDS issues, … but anyway, I came out of surgery in excruciating pain! I landed up staying in hospital for twice as long as “usual” and for months he told me to pull myself together and that I am imagining things! A few times I landed up in the ER I was in sooooo much pain that my muscles around my ribs were seizing up and I couldn’t breath. I have had ultrasounds and check ups and been poked and prodded, all which left me in more pain and ALL told me there was nothing wrong with me and to go home and to exercise more, and stress less!
But I KNOW that I am not imagining things, I wouldn’t imagine this for anything and nor would I wish it on my worst enemy! … and with any exercise or lifting or even bloating (which I get a LOT with the OAS), I am often in agony and can hardly walk! It’s probably not that noticeable as I am always with a crutch, but I am almost always holding my lower abdomen when I walk around, and it is always sore.
So when I woke up with my hip in so much pain I thought that’s it, I am going to my GP and we are going to sort this out once and for all! I asked for an ultrasound standing up instead of lying down and she totally agreed (she is AMAZING!!) and so also she examined me standing up instead of lying down and right where it hurts she said she can feel a lump (which I can too) So off I went for an ultrasound this morning. I was sitting there thinking of all the things that I was going to write and share here, about the humiliation of walking through public areas in nothing (AT ALL) but one of those blue gowns and my legs not shaven and sitting in a waiting room full of people for 2 hours, some who were fully dressed as normal and half who had NOTHING on but shoes and a blue gown!!! (and as none of us wanted to be bare foot I at least had my “sensible” shoes, but one lady was in stilettos!) But I won’t get distracted and will get back to the point and the frustration of being told “we don’t do them standing up” blah blah blah!
Thankfully the Dr who did the actual ultrasound in the end said that she would do it. So first she said (and I think that this is a good thing)
“I am going to check everything without knowing your history or why you are here, so that I can have an unbiased look at all your organs, THEN you can tell me what is wrong and we can look more into that”
So I said sure, and waited to see what she would say when she got to the right ovary. Sure enough, like everyone else, she said “the right ovary looks normal and healthy … etc” and of course I don’t HAVE a right ovary! With all the pain since the last surgery I have also had that stupid Novary (no ovary) checked soooo many times and specialist GYN Drs say there is without a doubt NO ovary left behind, but ALL ultrasound specialists including this one, say that there is! This drives me mental, contributes to specialists thinking that I don’t know what I am talking about and sending me home! It also contributes to my lack of faith in too many doctors sadly 😦
Anyway, so she did her thing and assured me that there are no tumours or growths or anything weird, no hernias, no nothing bad and that everything looks normal. Soooo I gave her my background, the surgery, the pain, and the EDS (to which she said: “Yeah I know that, the hypermobile thing” as if that is all there is to it), and then proceeded to check those areas again. I said my GP really wants you to do the ultrasound standing up, to which she was very kind, very helpful, helped me get up without my crutch, and even “ultrasounded” (new word!) the spot as I moved from lying to sitting to standing….
And as I stood a part of the intestine popped up, and so she asked me to cough and bingo!! Intestine popped through a hole in the abdomen wall! I can’t see squat on those things, it looks like grey fuzz to me, but even I could see that hernia pop in and out as I coughed !!!! No wonder I am in so much pain!! It was the craziest feeling of validation and I TOLD YOU SO!!! And at the same time so much anger at all the experts, all the money, all the pain of the last 18 months, all the desperation, the tears, the strain on my body! Every time I strain, move, cough, sneeze, or even get bloated, a piece of my intestine pops through a hole in the abdomen muscle wall! And it hurts like hell!! (not just as it happens but for hours and days later) …
So what does this mean? It means that the surgeon who did the surgery instead of saving me from a hernia created one! But of course neither he nor I knew that I had EDS, and of course in hindsight the EDS explains why I took so long to heal, why my wound popped open 6 weeks after surgery, why why and why …
SO what happens now? Well the first thing is that it HAS to be fixed! No doubt about it. But of course with EDS I’m supposed to avoid all surgery. HOWEVER, with the oestrogen working so well, it would be a really good idea for me to have a hysterectomy! (I meant to write a post on that but I haven’t had the chance and it will make this one too long if I add it here, so I will do that another day), but it’s not a good idea to do the surgery of course… but if I HAVE to have surgery for the hernia and it is the same “kinda” place as my uterus, we have an opportunity to do one big surgery, open everything up, remove what ever it is that is mistaken for an ovary and hopefully the pain there at the same time, remove the other ovary which has been such a problem, and remove the uterus which will mean I don’t have to have Progesterone any more which will be SOOOOO good for my ligaments because Progesterone damages ligaments, so for us Zebras it is our Kryptonite! … and repair the hernia and scar tissue and and and …. but doing it all with EXTREME care, and special stitches and bed ridden totally for the healing process etc etc etc …
BUT, that needs two different specialists and they both need to work out of the same hospital! One needs to open up well and in the right place, the other then does the GYN work and remove all the bits, then back to the first guy to repair hernia, remove scar tissue and damage and so on, and then stitch up perfectly and WELL!! Then it’s recovery time and none of this modern get up and walk this time, because that damages the wounds for me it turns out, so it’s going to be HORRIBLE because no movement means weaker muscles, more pain, more dislocations, blah blah blah …
So the bad news is I’m as much of a mess as I thought I was, … the good news is now that is recognised and validated, and they are going to do something about it! … then back to the bad news that it is very risky but I have no choice, and good again is that God willing I will come out of this in better shape than I am now? The bad news again is it is going to be one hellavan ordeal and I am dreading it! … and the unknown at this point is that we have to find someone good enough to do it (two people good enough to do it and who work out of the same hospital!!!) and are prepared to take it on!!!
I have suggested we try my original surgeon. I know he made a mistake but he had no idea that I had EDS and I believe that he will have a vested interest in getting this right. The other thing that I think is a really good thing is that as he did the original surgery he knows what he did instead of a brand new someone else going in! He knows exactly how and where and what he used, and what did and didn’t work … My GP agrees and so she is speaking to him tomorrow and we will see how we go.
This isn’t urgent as in life threatening but I am in an ENORMOUS amount of pain, and with any hernia, there is always risk of strangulation which would be a disaster. So I’m now on EXTRA careful care for the foreseeable future! Obviously with Christmas coming up and so on it won’t be happening until next year, and then I have to decide how long I can wait and find a gap long enough for 6-8 weeks of bed ridden recovery! I think that in mid winter I won’t mind being in bed but with the summer stretching before me and starting tomorrow, it is NOT how I want to spend my summer! Unable to swim, or do anything, and being stuck in bed in the heat is terrible and I’ll be even more uncomfortable ! … however, every day longer than necessary is a day too far away!
And the scary thing is … will this make things better or worse?? We simply won’t know until it is too late!!
So we will see …