It’s been a while since I’ve written anything here. Truth be told I just didn’t have the motivation. So much was going on in my life; my pain levels have been crazy and my down days were overshadowing all the others.
Just to catch you up: I had surgery in August, this came after having an Ultrasound, an MRI and a Colonoscopy. The MRI showed a 3 cm mass and 12 cm of thickening in the colon. They thought that it was cancer but the Colonoscopy was clean- no mass or thickening. That was still concerning since it meant that what was seen on the MRI was on the outside of the bowel.
So I went into surgery after weeks of excruciating pain, still unsure of what would be found. They found a 5 cm chocolate cyst in the left ovary. That ovary was stuck to the bowel, bladder, ureter and pelvic wall. The OBGYN described it as a messy ball. They had to stretch and dissect it all. The General Surgeon noted that the thickening and “mass” seen on the MRI was all scar tissue and deposits on the outside of the bowel. I also had several para-ovarian cysts filled with fluid across my pelvis.
They took the ovary and all the cysts, cleaned up all the scar tissue and endometriosis deposits. I was in theatre around 3 hours and spent 5 hours in recovery. I really didn’t think I was getting our of there alive………………….but that’s another story.
So………………..you’re caught up!
Since the surgery I have had relief with bowel movements and urination. There was debilitating pain with both before the op. Which was associated with the organs being stuck together. However, no other pain relief! I have continued to have crippling pain . I had continuous pain for a few weeks post surgery and since then again at ovulation and cycle time. I returned to work in October and was only able to work for two weeks before I had to be off on sick leave again.
That has been the general pattern since then. I work 6 -10 days and then I have to be on leave again.
My cycle has settled back into a predictable routine. 28 days exactly; so every 2 weeks I am in pain which I cannot manage. Sometimes, it seems as though there is no ease or break in between ovulation and cycle. I’m just in constant pain.
I had stopped taking the morphine after the surgery; I had hoped that I would not have to take it again. However, I am now back on it just as before.
I am also taking “Visanne” for the Endometriosis. That is a relatively new drug, formulated specifically for Endometriosis. It is supposed to retard the growths of the legions/ deposits, in essence restricting estrogen and shutting down the ovary/ies. It works just like GNRh Agonists e.g Lupron, Danazol. However, it has been shown to have less harsh side effects.
The only change I’ve noticed is less breast pain and people are telling me that I have gotten clearer, my skin looks shades lighter- well to others………..it looks no different to me-………………….and that’s it………….no other change. Thing is though, since I have both Endometriosis and PCS it’s difficult to differentiate the pain. So the Visanne could be working on the Endometriosis but my pain be coming from PCS.
What drove me to write today though………….I told two persons that I am on sick leave again and they both responded in similar ways.
The first person said ” I don’t know what the problem is now but I will pray for you”.
The second person said “You have to get better this time”.
I believe they are both genuine in their comments. They both care for me deeply. Yet, they do not understand the nature of my illnesses. There is no “this time” or “getting better”………………..at least not in the sense they are meaning. They, like everyone else, still see my pain as acute as opposed to chronic. So they expect that like them, I will be ill and get better. So, there’s no need for the constant meds and time off work.
The nature of chronic illness is that it’s chronic- lifelong. It’s with me for the long haul. I may feel better sometimes and be able to work but, I am still ill.
How can they be close to me and not understand. I have explained time and again and now I am tired of doing it.
Is it that people don’t listen? Or is it that they just have hope that I no longer have? Honestly, I don’t know.
What I do know is that their comments rubbed me the wrong way. I felt like they understood………………….now I see that they don’t. Can I blame them though?
Unless you have a chronic illness, you don’t or can’t get chronic illness. That’s the sad truth.