Hey guys! It's Kaitlyn. This blog post is written by one of Invisible Wave's amazing ambassadors, Sarah Sheppard. Thank you Sarah for this amazing post!
It’s been awhile. Hope you are all doing well and dealing with the crazy changes over the last two years. Currently, where I am in my health ‘journey’ is in limbo. Pretty much the same place I was the last time I wrote a piece. Hovering between two worlds; between chronic pain and actually having a life.
Before I talk about my present I want to tell you about something positive from the past. I had my hysterectomy last November 2020. It was an emotional decision but I had come to the end of the road and had no other choice. I’m unbelievably happy I did it though as I finally got the answers I was searching for so long. My uterus, fallopian tubes and cervix were removed. My right ovary was kept so, fortunately, I have not had to be on any hormone treatment. After my insides were examined, I had an appointment with my doctor who gave me the results. My uterus was riddled with endometriosis, but on a cellular level so it never showed up on scans; also I had severe cervicitis which would explain the pain during sex and the recurring urinary tract infections. I don’t think my words can explain the joy of validation after so many years of being ignored and abandoned by so many doctors. I have definitely had many moments of baby fever and realizing that one making a choice about having a baby is one thing, but having that choice taken away from you forever is very different. There has certainly been times where I have mourned that but my pelvic pain has been reduced by about 50-60% which is wonderful.On a personal note: when I was medically allowed to have sex again - I was terrified. But, for the first time in four years, I was able to make love to my husband and not be in agony. We cried together in happiness. It has been the best result of the surgery because, I believe, intimacy with our partner is so important to our happiness.
So my pelvic congestion syndrome has been quiet for a while but recently I started getting slight pain on the left side of my abdomen again. As that can be a sign on a blown out vein, I contacted my Interventional Radiologist who said I needed an MRI to check on my pelvic veins. Also needed an updated scan on my spine and neck so we thought we’d bang them out together! This is where I discovered UCLA’s new procedure for booking them. If, like me, one has medical implants like a stent or coils (I have both) then you need to be ‘approved’ before you can book an appointment. This seemed a bit silly considering I have had two MRI’s since my implants were placed, but, I’m all for safety.
I was told I was high priority and someone would call me back. Nobody did. Three times this happened. Finally I got through to someone who asked for all the serial numbers of my coils and my stent; I don’t have any of my serial numbers but this seemed to flummox the girl on the other end of the phone. Even when I explained that perhaps a doctor could provide the scheduling department with that information (as she was at UCLA) I was told that they can’t do “that sort of thing," that she couldn’t book me without that information and promptly hung up on me.
Another four unreturned phone calls later and I ended up emailing my Interventional Radiologist, Prof. John Moriaty, who was back home in Ireland over the pandemic.
He told me that needing the serial numbers was “absolute crap” and he had his office write a letter clearing me for all procedures. Lesson here is: even after one failed attempt, go straight to your main doctor. I could have saved myself 3 weeks of stress.
I should know by now!
We move on to now. The last 6 months have been spent dealing with my spinal issues.
Having numerous injection surgeries; back and forth to the UCLA Surgery Centre in Santa Monica having back epidurals in my L4/5 and neck injections. The back procedure works pretty well — gives me pain relief for about 8 weeks and I have it done every 12. We haven’t had much luck with my neck yet unfortunately.
A few weeks ago I had 8 shots, including the local anesthetic injections it was more like 14 all up. I thought I coped well but my doctor told me after I was crying a lot! I don’t remember a thing. A bit like giving birth; I recall it being quite a peaceful experience but my husband has a very different recollection!
After the MRI results I was told that I have another bulging disc, this time in my neck, C6. Not so bad that it will require surgery thank goodness but enough to be causing the pain. The recent neck epidural wasn’t successful though unfortunately. A few days after the procedure I started experiencing terrible headaches — as I am not a girl that gets a lot of headaches I found this strange. Also other symptoms started concerning me, dizziness, muffled hearing and sensitivity to light. After talking with my pain management doctor he believed I had a spinal fluid leak, which can be a side effect from the epidural. Not fun but it did heal itself in a few weeks.
It seems strange to finally get relief from my pelvic pain and be thrown right into spinal problems and the suffering that comes with that. I did feel my journey was coming to an end after my hysterectomy, but it seems it was simply a crossroads and my life has taken me on a detour. I’m doing my best to stay strong mentally but finding it harder and harder. My daughter is getting older and understanding so much more. The way she’ll rub my back or run to get my medication when she can see I’m in pain is unbelievably kind and speaks volumes to who she is, which makes me so proud, but it also makes me feel incredibly guilty. That she’ll associate her mother with pain and suffering and feel she has to look after me is too much pressure on a five year old. Also the expression “when you get better” is used many times when making plans. I am trying to say YES more to her. I am making myself sit on the floor for Barbies and Lego. I took her to Universal Studios a few weeks ago after promising I would. We had a wonderful time and I wanted to show her that I can keep my promises. “Mummy didn’t have to rest today” was as exciting to her as meeting Blue the Raptor from Jurassic World (her favorite movies). To be present with her and my family is vital for me to keep going; otherwise its a depressing merry-go-round of appointments and prescriptions and procedures and only edging towards the finish line like a snail.
The finish line? I don’t even know what I equate with that anymore. I suppose living with a minimal amount of daily pain and able to spend the day with my daughter and not having to take the next day off to sleep.
I have a couple of babysitters but no longer a nanny for her - that was a goal I had a long time ago and I have reached it; something I can be proud of.
Medically, I have just had a cervical medial branch radio frequency ablation procedure.
It is 36 hours since the experience - I have had great feedback from people who say it works but currently I am just sore and feeling sorry for myself. They burn the nerve endings around the area that hurts so it cannot transmit pain; fortunately my doctor is not thrifty with the sedation so I don’t remember much about the experience. It can take two to three weeks for it to take effect so, hopefully by the next time I write a piece, it will be good news. If I don’t stop hoping for that then there’s not much left.
We have to have hope; even when it’s a dark day; the sun will always come up tomorrow.