Just came back from a medical clinic and feeling distraught. Three weeks ago I had the fortune of being able to taper my cylosporin (anti-rejection drug) completely off. I was happy and cautiously celebratory about it. I was almost afraid to finally take a look at a life without cancer and without complications. Five days ago, though super vagina began to ache.
Not from a wild and passionate love encounter but for no reason at all. I became scared. I didn't rush to call the doctor because of what it all means. After a couple of days without it going away I called the doctor and had an appointment today. I sat and waited and waited while the time passed by my appointment and they kept filing the backlog of people in. I had a family emergency and just couldn't wait any longer even though the reason for my visit is potentially life threatening.
A couple of hours later I raced to a clinic which I avoid at all costs. I avoid them because they have no clue what my sentence (Freudian slip there but I'll leave it) is. I am like some sort of alien science experiment. They don't know what to make of me. Medical professionals don't know what to make of me.
They are great doctors but I'm too far out of their realm. I have to explain the bone marrow transplant and the basic mechanics of what that means. I have to tell them all the pieces that are relevant and let them fill in the gaps with the medical knowledge that they have.
I was kind of thrown off when the receptionist asked what the visit was for. I rambled a little trying to explain, starting with, "I'm complicated...". Once I rambled a bit she said, "How about I put 'vagina pain'?" Me, "Yes, that's the short answer, that's what I should have said..."
So I was sent in and waited impatiently for the doctor. When he came in he was an elderly gentleman and asked me what was up...I explained.
He said, "Say what?", I guess I won't be quoting exactly. I explained again slightly louder. He paused. Asked a couple more details and left the room so I could strip and get on the table.
He came back in and tried inserting the speculum. When he did, it felt like I was being stabbed from the inside. Despite my unusually high pain tolerance my hand pressed against the wall because there was nothing to grasp. He apologized in surprise that it hurt me so much and finished the inspection.
After I was able to get myself together, he told me it doesn't look like any vagina problem he knows of and explained what the walls of my vagina looked like. He was able to see that something is wrong but not able to identify it, which was what I was there for. Now that the usual vagina plaguing suspects are ruled out, my oncologist will step in. He then began to ask me out of curiosity what the bone marrow transplant was like. He then asked me what type of pain the situations I went through were like. I was left without words.
I absolutely loved that he asked and was curious because I also have a scientific mind. The part that overwhelmed me is that there was no real description for me to give about the pain involved. After attempting to explain, I told him it was indescribable. Only some one who has been through it or someone who has witnessed it would know. He then explained that women don't usually complain of vagina pain. They may talk about pain during intercourse but straight out pain is unusual. In other words this pain must be way bad.
And here I am waiting for a return call from my oncologist but it's the end of the day on Friday. I likely won't hear until Monday.
To sum up what's happening, the graft/vs/host has likely flared up. I'm not out of the clear yet.
I can't skip off into the sunset just yet.
It's reverse organ rejection but the new oragan (my blood/immune system/stem cells) are rejecting me and not just me....BUT MY VAGINA. This happened before, I was on huge doses of drugs and had to have surgery to remove all the scar tissue inside. Yum.
My oncologist explained before that some people do well on the smallest dose of the anti rejection but you take them off of it and WHAM, the GVHD goes wild again.
My biggest fear is of dying and or being hospitalized, my second is having to go back on the drugs that made my life hell and third that I will have to have another vaginal surgery. I guess my fourth fear is that my cervix will close up again and I'll be in so much pain I'll need morphine.
Deep breath. One step at a time.
And to relieve anyone's fear who has been through a BMT transplant or is going to go through one, this level of vaginal attackage is not usual. Even within the spectrum of unusual, I am still unusual.
And to also add, the GVHD has not been confirmed yet. Likely they'll send me back to the specialists (because I'm super special). If I'm lucky, it will be something else.