My story begins twenty one years ago, when I was fifteen. I was late to puberty, the last in my class. This caused me much embarrassment; as silly things like that do when one is a teenager. I began my period but they were irregular and the cramping and pain were extreme. When I was seventeen I was diagnosed with polycystic ovary syndrome. Fortunately I never experienced the acne, weight gain or hair growth that can go with PCOS but I had a lot of cysts growing on my ovaries and the irregularity of my periods didn’t improve; even when I went on birth control. Between the ages of twenty five and thirty I had five cyst removal surgeries on my ovaries. I believe they don’t operate on cysts here like they do in Australia; or at least did on me. Having always been told it would be difficult to get pregnant, my boyfriend and I were surprised and happy when I fell pregnant after three months of trying.
My pregnancy was mostly great except for a 8mm kidney stone; which I ended up passing at the same time as giving birth! A sort of two birds with one stone type situation! Ha. That was March 1st 2016.
Physically my body repaired well after birth, but about 6 months later I started getting terrible pains in my pelvis and on the left side of my abdomen. After repeated trips to the hospital; one night in September 2016 I had emergency surgery on my left ovary where my doctor removed some cysts that were clustered together.
I felt a little improved but there was still the same searing pain on my left side and a feeling of immense pressure in my pelvis. I was incredibly fatigued and numerous doctors told me there was nothing wrong with me but “possible scar tissue”, “some women just have pain” and “have I thought about seeing a psychiatrist?”
It was demoralizing, depressing, embarrassing and felt like a lost cause. All the pain did was get worse and the path to discovery the cause got shorter.
One day I was at my OBGYN’s office having an ultrasound when he pointed out I had dilated blood vessels around my uterus. I asked what that meant and he said, “nothing.’
That night; I couldn’t stop thinking about the blood vessel comment and turned into Dr. Google. I came across a condition called Pelvic Congestion Syndrome. I studied it for an hour, website after website. I called my husband who was working in Vancouver; I started the conversation by saying “I think I’ve found it.” It had been two years at this point of searching. PCS is a chronic condition that occurs in women when varicose veins form below the abdomen, within the pelvic region. The veins become twisted and/or enlarged. Blood pools within the veins. The symptoms include a heavy, aching feeling and sharp pain on one side (usually the left). Things that make it worse include standing for a long time, sexual intercourse and walking. PCS is believed to be caused by pregnancy; the veins in the pelvis enlarge to account for the extra blood for the fetus but don’t go back to normal after delivery.
I had been having every one of those symptoms.
So the thing about Pelvic Congestion Syndrome is that a lot of Doctors don’t believe in it or they don’t believe it causes pain. It’s incredibly frustrating to ‘know’ in your heart that you have diagnosed yourself correctly but no one is listening. I finally convinced my OBGYN to send me to a specialist. The specialist scoffed slightly at the idea of PCS; saying that to diagnose it I would need an MRV, MRI with contrasting dye injected into me. I asked for one and she again said that she didn’t think that’s what I had. I replied “with all due respect, you don’t have any other ideas so please can I have this scan.” Yes I could.
The evening after the scan I got a phone call from said specialist; confirming that I had a serious case of Pelvic Congestion Syndrome, plus May Thurner Syndrome. A syndrome caused when the left iliac vein is compressed by the right iliac artery. The symptoms of leg pain, leg swelling, feeling of heaviness and pain with walking. She said I would need a stent put in for the MTS and embolization for the PCS. Embolization is a minimally invasive surgical technique; the purpose is too block a blood vessel or abnormal vascular channel. I was referred to Professor John Moriaty at UCLA, an interventional radiologist and an advocate for pelvic congestion syndrome. I encourage anyone who needs a radiologist to contact Professor
Moriaty; not only an incredible doctor but a lovely, kind man who makes his patient feel listened too, believed and supported before, during and after surgery.
So I went in for my first surgery in August 2018. Moriaty said my pelvis (vein wise) was like a ‘crapstorm’. After not much improvement I went back for a second procedure three months later. My surgeon commented he had done over 300 surgeries for PCS and mine was the worst case he had ever seen. I subsequently went back for a third and fourth surgery; the most Moriaty had ever done on a patient was two. I still felt pain and pressure in my pelvis though plus I was getting numbness and tingling down my left leg; a relatively new symptom.
Through subsequent MRI’s my pain management doctor found that I had a slipped disc between the L4 & L5 in my spine as well as spinal deterioration at the base near my pelvis.
I began working with Dr. Jakun Ing - a pain management doctor and Professor of Anesthesiology at UCLA. Another fantastic man.
In 2019 my then OBGYN decided to remove my left ovary to see if it would decrease the searing, aching, stabbing pain I was still having in the left side of my abdomen and pelvis.
I was in hospital for 7 days for pain management after the surgery; during this time I felt the beginnings of a urinary tract infection. I asked my doctor to take a test but she refused and told me, and I quote, “get some monistat when I left”. Clearly this angered me as I knew my body and recognized the stirrings of a UTI after two years of recurrent ones. Despite the nurse asking her as well, the doctor still said I was fine.
I left hospital and over the next few weeks my surgical sites healed but I continued to feel ill and weak. After 5 weeks I was getting sicker and was taken to Cedars Sinai in an ambulance one morning. I was found to have E.Coli poisoning; most likely contracted during my surgery. My bladder had backed up into my left kidney and I was extremely close to sepsis. This can be fatal. I spent 8 days in hospital on IV antibiotics and felt like I had taken five steps back in my recovery. What was especially difficult was I was assigned a young Doctor at Cedars Sinai that didn’t believe in Pelvic Congestion Syndrome and treated me like a drug addict. I know that a lot of my fellow young people who live in chronic pain are treated this way when we require pain medication simply to get through a day. I was continually being insulted by this Doctor and am still upset that I didn’t stand up for myself for. I was weak and depressed. He told me that I “was too far gone” to help and when I told him to speak to my pain management doctor he replied “you have one of those?” Shocked, I said “Its in my file, where do you think I get my medication? A street corner?” He had the gall to shrug at me and say “who knows with people like you.” That was the final straw; I asked to change doctors but while the second one wasn’t much better, at least I wasn’t being humiliated.
It took a few months to gain back some strength; my mental health was being affected too. I was sad that I didn’t have a social life and that I was too tired to play with daughter. That it hurt to much to make love to my Husband. That I couldn’t drive more than 30 minutes without searing pain down my left hip and leg. I was feeling helpless that the left ovary removal didn’t seem to help at all. During the last half of 2019 I had two nerve block procedures with my pain management doctor but they didn’t alleviate any pain. It seemed like all I was doing was taking steps back. At Christmas we traveled home to Australia. It was incredible to be home, too where I feel more ‘me’ than anywhere. I felt detached from myself and having to take 4-5 hours out of every day to sleep certainly took time away from my friends and family.
I was continuing to get urinary tract infections every 6-8 weeks and no-one had any idea why. A cystoscopy was done (one of the most uncomfortable procedures I have ever had) and everything looked ‘normal’. A little frustrating as you can imagine. Its almost as if one wishes for them to find something wrong so they can say “This is the problem. This is the solution. Easy. Your troubles will be over.” Wishful thinking.
So here we are at the present day. August 2020. Recently I went to see a new OBGYN and she agreed that the only option left was a hysterectomy. We will consider leaving the right ovary so IO don’t go into menopause but as I continue to suffer every month with ovulation, despite the fact I no longer have my period, they may take it out. My period has always been irregular but it never came back properly after I had my daughter.
I am waiting to hear from insurance if they approve the hysterectomy. I don’t know how soon I will be able to have the surgery as things are taking longer due to the Covid pandemic; however I am hoping this is the one that will work. Or at least take a percentage of my pain away; I’d be happy with 30%! It is a very emotional decision to go ahead with the surgery. I know I do not want another baby, despite loving my pregnancy, but I am so sad to think of that choice being taken away from me. It was also where my daughter was created and grew- that part of me that still connects us; gone. However the question is; do I want to have a quality life and be the best mother I can be for the child I have or mourn the loss of the children I never will have? The answer is easy. I continue to have to rest a portion of every day and take strong painkillers. I am looking forward to the day when I can start slowly weaning myself off them and have a life free of opioids. I am looking forward to the day when I can get through one without a rest. When I can pick up my daughter without flinching in pain. I have to believe that those days will come or I drive myself crazy. My depression and anxiety comes in ebbs and flows; some days I am great but other days, I feel completely lost, empty, like my life is being wasted. I miss my parents in Australia constantly but have an amazingly supportive family with me, I am financially secure and we have health insurance so I am blessed in many ways.
I hope one day my story will have a happy ending.