On 20th September, I had my second laparoscopy.
Since my operation, I haven’t cried. I have tried to be strong, if I lose it- even for a minute, I may never pull my shit back together again. In the past when I’ve cried, like a sneeze, the people around me cry too. This makes me feel guilty. Guilty for making them sad, guilty for making them despair along with me, guilty because there are people in the world in a worst situation than me.
I was re-diagnosed. This time with Stage IV Endometriosis. My entire abdominal cavity was covered in cysts; on my ovaries, uterus, ureter, appendix, bowel, abdominal wall, diaphragm, a lot of Endometriosis, everywhere. I have seen the photographs my Dr took during my surgery. I have seen the physical damage this illness has caused. Now I’m dealing with the emotional damage.
Every day since my surgery, I have woken up in pain. At 6:30am, my husband, who has been a never-shaking source of support and strength, fills my hot water bottle and slides it under the covers while I sleep, and then leaves for work. He has been there every step of the way, and although he cannot take the pain away, he has shouldered this burden with me. He’s been there: when I’ve woken him up in the middle of the night, moaning in my sleep as I struggle with pain, he has waited alone in a hospital room- waiting for me to come out of recovery, ever being the calm in the eye of the storm. As I start to panic and become overwhelmed- I look to my husband, hold his gaze and I’m able to breathe again: “We’ve got this.”
Two weeks after my operation, I travelled back to the hospital for my follow-up appointment. As I sat in front of my Dr, with my rock (hubs) sat at my side, listening intently to the details of my second laparoscopic surgery, I was so thankful that I was under the care of such a good specialist. He understood my pain, he didn’t mock it and seemed to genuinely want to help. This doctor knows what Endometriosis is, how it affects a woman’s life, what treatments are available.
“There was a lot of Endometriosis there. It’s no wonder you’ve been in so much pain. We had to do a lot in the surgery.”
My Dr had managed to repair much of the damage around my reproductive organs and surrounding tissue. There was some that would remain untreated for the time being, due to the risk of causing further damage. The endometriosis on my diaphragm had to be left to avoid puncturing my lung. My bowel would need to be treated with a bowel surgeon alongside my Dr and so would need a separate surgery.
He then told me he’d sent my cysts off to the lab for analysis. All of a sudden, my focus suddenly acute, all I could do was watch his mouth as he formed the words “borderline” and “tumour”. A dull roar began in my ears, I felt my heart speed up, my blood pressure soar. I know it’s unlikely that I physically felt these changes in my body, but I swear- in that moment, I felt everything.
It was like just before you start to cry. You feel that lump in your throat, the tears hot in your eyes, and you take a breath and the tears fall. It was like that, but lasted the rest of the appointment and the entire car journey home and the tears didn’t fall. It’s all too much.
The doctor had taken photographs during my surgery, due to the fact that it was so extensive. Some masochistic part of myself wanted to see them; to see the thing that was causing my pain, the thing that had been at the root of a lot of my distress over the past 2 years. I could see it all. The stark black-blue growths that were so obviously not meant to be there. The fat, swollen cysts that had latched on to my appendix, ovaries & uterus. The scar tissue and adhesions that were pulling my ovaries and fallopian tubes the wrong way, the adhesions that clung to my internal organs. I could see early stage one endometriosis on my abdominal wall, next to stage four endometriosis and cysts covering my ovaries. It was all there- laid out on the doctor’s desk- 4 pages of photographs that wouldn’t have looked out of place in a horror movie.
And where am I now? I’m sat waiting for my Dr to speak with a colleague of his, a gynae-oncologist, to see if he suggests any further treatment due to my ‘borderline’ result. I don’t care how many times to doctor says “it’s not cancer, it’s borderline, we just need to make sure, it could have gone either way,” when you hear tumour, you think cancer. I don’t have cancer, just a funky looking cyst with a borderline result. This doesn’t make me feel any better about it.
So it’s back to the waiting game, which I’m not very good at as I don’t have a lot of patience. Throughout my experiences with healthcare, it seems a lot of my time is spent waiting. Waiting for my blood results to come back, waiting for a scan date, waiting for the GP to ring me back, waiting for an appointment.
I’m sorry if this post is depressing or lacks humour but – in fact – no. I’m not sorry. I will not apologise for being honest about my illness. I will stop apologising for my illness.
I have asked for 100% honesty from my doctors, and so you can expect 100% honesty in the way I share my experience with you. I hope to be able to give you better news next time, but for now- this is me, having a sucky time.
…and if anyone wants a pair of those sexy DVT stockings (toes to thigh) – let me know I’ve got a spare pair 😉