I’m not exactly sure how to start this.. for quite a few months now I’ve been dealing with pain and just feeling run down. I’ve also have been having flare ups of pain to where I can’t walk and it feels like I’m giving birth followed by being sick and run down even more than usual for a few days after. Of course we moved to a new location (in southern US) a few years ago but after my last bout of pain and I called the first clinic and just asked them to schedule me with whoever. I saw the sweetest nurse practitioner who cared and referred me to see the doctor because she had a few concerns about things and the amount of pain I was in (I have endometriosis and IC of my bladder and kidneys but this isn’t my normal pain). When this appointment came around the doctor said she didn’t want to examine me to prevent me from being prodded even more said my ultrasound showed endometrial hyperplasia which meant I now have adenomyosis, I have cysts on my ovary (already knew this), my lining is thick, and the tech saw my endometriosis. For whatever reason my husband told me to call my ob from back home for a second opinion. Thankfully she asked to see me the following week. This turned into us coming to the decision for a hysterectomy but before we could proceed I needed to have another pap (it’s been 6 years due to the birth of my last, then hurricanes, and moving to a different city) well during this exam she noticed my vulva and perineum looking a little strange. I mean I’ve noticed it, it’s been like this for ten years (I’ve been seeing her for 18), it’s grown, no longer looks like it used to, but I assumed if no one has said it’s an issue there’s no need to worry? Well she requests an urgent biopsy to be done later that afternoon. Not sure why but I knew it wasn’t going to come back normal, I mean I know what it used to look like. I already knew it would be vin that’s fine maybe we can just do some cream or surgery and that’ll be the end of it. Well Monday my results came back and it’s severe vin2/3. Still I’m like okay nbd she’ll just call and we’ll handle this first, I knew it would probably be something like this. What I wasn’t expecting was for when she did call for her to say she spoke with the oncologist and they both don’t believe it’s not invasive and they both believe it’s worse than what the edge of the biopsy is showing. He wants to see me right away and has currently put my on progesterone to prevent cancer cells from growing even more. Which okay cool, little weird we’re going so fast but also my mind can’t fully wrap around everything. I asked if this could be linked to my cervics or something and how right before the call I passed a strangely large baseball clot (that’s actually not normal lol) and why I’m in so much pain which she said yes but we had to wait for it to come back to verify. Which I’m sure it’ll be normal, that’s totally fine. I am just over being tired and in pain. Was not expecting this outcome, I’m just ready to get it all over with so we can move on from my vagina and get to the reason why I can’t live a normal life and why I can’t go a single day without feeling like myself or pain.
Hello Qrstuv
Welcome to the Vulva Cancer group.
I am sorry to hear that you have had so much going on medically and the outcome was not as you had expected. The pain sounds difficult to manage.
I can understand why you feel like you do not really know what is going on but it does sound reassuring that the oncologist is thoroughly looking into everything. One they know exactly what is going on then hopefully they can come up with a treatment plan that can be put quickly into place.
In the meantime if you get any further bleeding or severe pain, or anything else unexpected I would suggest giving the hospital a call to let them know.
I hope that you hear back from the hospital quickly. I know how hard it can be to cope with the waiting.
if there is anything you need in the meantime, please do ask.
Jane
