My giant ovarian cyst the size of a watermelon – Laura’s story

The day I was told that I had a giant ovarian cyst I turned immediately to the internet for answers to the questions whizzing around my brain, but I quickly discovered that every story is a little bit different and finding answers quite difficult. Early on I decided to keep a diary of my journey, in the hope that it may help someone facing something similar. My way of coping with how anxious I felt was to approach it all like a work project (lots of research, preparation and organizing).

In my case, the motivating factor in March 2016 to visit BUPA for a top-to-toe health check was utter despair with my NHS GP and concern about how unwell I felt. My symptoms were (in no particular order) (a) back pain (particularly lower back) all the time, my body ached every day, the upper right of my tummy was always painful, I couldn’t tie my own shoe laces; (b) my tummy was enormous (I looked six months pregnant, people had started asking me when I was due); (c) my bowels changed (upset tummy a lot and pain before going to the loo) and bladder changed to feeling like I always needed to pee; (d) I suffered from debilitating fatigue and foggy brain; (e) I gained 2.5 stones in two years, even though my appetite decreased due to regularly feeling sick and bloated; (f) I had PMS for approximately 10 days every month then bled for approximately 10 days every month (leaving only a week or so of “normality”); (g) my coil was very uncomfortable (especially going over speed bumps or when any pressure was applied to tummy area); and (h) I was taking painkillers daily. For 26 years (from the age of 15 until 41) it felt like my ovaries controlled my life. I had numerous exploratory procedures in my teens, 20’s and 30’s which diagnosed PCOS and explained infertility, monthly pain and miscarriages.

The symptoms I had been experiencing were easily blamed on period pain, stress, extra weight, the coil perhaps being in the wrong position, working long hours, PCOS and it was also suggested I was peri-menopausal. My symptoms overlapped with so many conditions, but even though I was always specific about discomfort at the right side of my tummy, I was told repeatedly to have an early night with hot water bottle, take painkillers and accept “it’s just lady stuff”.

However during my health check BUPA quickly identified issue on the right side of tummy and pelvic area and recommended urgent referral to gynaecologist. In May 2016 an ultrasound scan showed up an ovarian cyst which finally permitted me to see gynaecologist who discovered the 22cm watermelon sized cyst on my right ovary. It was so big the scanning screen appeared all black, and caused the gynaecologist some confusion initially. Subsequent CT scan and blood tests resulted in me agreeing to a hysterectomy at the same time as the giant cyst was going to be removed. Due to my gynaecological history, presenting symptoms and elevated CA125 blood test results, at 41 years old with no children I had the full support of my husband and gynaecologist to have a hysterectomy. My surgeon had a hunch the cyst wasn’t cancerous due to the CT scan image, but until it was removed and thoroughly analysed he could not be 100% sure.

Surgery was scheduled to take place on Wednesday 22nd June 2016. However that day didn’t go quite as planned. The giant cyst started twisting on its stalk about 5am. My husband had to call an ambulance, I vividly remember how pale and stressed his face looked (very unusual for him as he’s a solid, stable individual who doesn’t worry about much). It was the worst pain I have ever felt and I was terrified. I was violently sick all over our bed before the ambulance arrived. I remember the paramedic being amazing (can’t remember his face but remember feeling safe). Morphine was given en route to the hospital. I was vaguely aware of close family arriving in A&E to see me. I was sick again in A&E, a young nurse ignored my warning that I felt sick again. The gyny surgical team visited me in A&E to explain that urgent surgery was required, acknowledging how unfortunate it was that the cyst started twisting on the day I was scheduled for surgery. My body had obviously had enough. I vaguely remember being prepared for surgery and speaking to anesthetist.

My husband thinks I was in recovery ward until 4pm, before being moved to Intensive Care. My nurses in Intensive Care were incredible. I had a catheter in to empty my bladder which was a bit of a surprise (I remember asking the nurse if I needed to do anything, not realizing it automatically emptied my bladder without me doing anything!) and two unusual pain catheters in my tummy, near the top of the incision, to manage pain. The anesthetist topped them up every 6 hours while I was in Intensive Care.

I clearly remember longing for a mug of tea and that I finally got one about 1am in a plastic beaker with a straw. I didn’t sleep well in intensive care, it was a surprisingly noisy ward. I was invited to self-administer morphine, but was so dopey I kept having to be reminded to press the button I was clutching in my hand. My heart, oxygen levels, blood pressure, fluid and oxygen levels were all being closely monitored. The nurse helped me to move in the bed that evening, and encouraged me to sit at the edge of the bed and stand about 6pm on the day of surgery. I remember her rubbing my back, it was so comforting. She also gave me a lilac hair bobble to control my wild sick covered hair. I spent ages worrying that first night that lifting Waitrose shopping bags the previous day had maybe upset the giant cyst, and I remembered having a particularly large stretch in bed the night before I awoke in agony.

I had an Abdominal Bilateral Salpingo-Oopherectomy, Sub-Total Hysterectomy and the giant dermoid complex ovarian cyst (also known as mature cystic terratoma) was removed. It measured 21cm x 19cm x 12cm and weighed 11.5 pounds, and contained mainly nerve tissue. Everything was removed apart from the cervical stump, which is why I still need to have smear tests. The 12 inch vertical incision was held together with 32 staples and it was quickly noticed that my body had reacted badly to the self-adhesive dressing (Mepore) applied by the surgical team to protect my incision. The Mepore caused large nasty blisters all over my tummy.

Day 5 post op I was allowed to go home. I felt exhausted, sore, fragile, violated, in shock and hormonally wobbly like I have never felt before. A nurse removed half of my staples eight days after the operation and the remaining half were removed 12 days post op (although I hid under my pillow, it wasn’t as bad I thought it would be). Six weeks along, my 12 inch vertical incision was healing well, although my stomach was still swollen and would remain so for some time as the inside layers knitted together. The blisters on my tummy caused by Mepore dressings were painful and took longer to heal than the vertical incision, requiring regular nurse visits and antibiotics.

My menopausal flushes kicked in 10 days post op and at their worst I was experiencing up to four an hour (around about this time I also started crying ALL the time, over everything and anything, and I felt a little manic – wanting to plan holidays, plan catch ups with friends, book nice restaurants, decorate the house, buy new furniture, change my hairstyle and run away to Bora Bora). I got a letter from my surgeon 23 days post op to confirm that no cancerous cells were found, I slept extremely soundly that night as it was the first time in months that the “C” word definitely wasn’t a possibility. At week six, I started taking HRT (Kliofem) to combat risk of osteoporosis and menopausal side effects that accompany the removal of ovaries and loss of oestrogen. Initially HRT made me feel really nauseas, but after one month I switched to taking it at bed time (instead of the morning) and the nausea and hot flushes significantly improved.

There were a number of things during the first six weeks after surgery that I believe aided my recovery, here are a few, (a) I took a number of vitamins and supplements (Vitamin C (1000mg), arnica (two pillules four times per day), Omega 3,6,9 and general multi-vitamin); (b) I bought a Nutri-bullet and had a smoothie every day during the first six weeks, adding organic wheat germ to promote healing; (c) to care for my gut I had an Actimel drink or live yoghurt every day; (d) I enjoyed pineapple chunks or juice every second day after reading that pineapple contains natural anti-inflammatory; (e) I couldn’t sleep without my V shaped pillow; (f) I loved the abdominal support belt from Hysterectomy Association (which felt like hands under my tummy supporting it); (g) I collected selection of comfortable nighties and huge big granny pants!; (h) MagiCool spray felt wonderful during flushes and calming spray for my bedding (chamomile and lavender scent, thoughtful gift from my sister) made me smile; (i) I had lots of reading material, which helped distract and relax me. Some days I wanted escapism, other days I wanted information about menopause; (j) Boots scar serum felt good and once all the staples were removed I started gently applying this to my tummy twice a day; (k) a telephone and small table next to my bed with everything at arm’s length encouraged independence; (l) oscillating fans were a necessary treat, I bought two (one for downstairs and one at my dressing table as blow drying my hair nearly finished me off when the hot flushes were particularly bad); (m) being able to go through to our spare room during the first month or so post op (to read and sit up with light on, or have a big noisy sob) made a big difference and meant at the very least my husband slept well (as no house needs two tired grumpy people living in it); (n) I grew to enjoy my bed time Ovaltine; and finally a tip from my mother in law who had a hysterectomy “stay in your dressing gown for as long as possible, as the moment you get dressed people (i.e. hubby) assume you are back to normal and up for housework and cooking. Being in your dressing gown reminds people you are convalescing”.

Six weeks post op I introduced new vitamins and skin care to my routine and got out and about more. Vitamins I now take are (a) Nutri advanced vitamin d3 drops with K2 (for bones to encourage calcium update); (b) Nutri MegaMag Calmeze (magnesium and B vitamins) to ease anxiety, support energy and improve sleep; and (c) Nutri Adreno Max Multi Vitamin and mineral complex (high level of B vitamins and C, adrenal glands support hormones, 5 HTP re serotonin). I struggled to find a definitive list of supplements and vitamins a young-ish menopausal lady should be taking, but a useful article in Woman & Home magazine introduced me to the Nutri range. I added serum (lots out there but I have been using Olay Regenerist 3 Point Super Firming Serum) morning and night to my skin care routine (applied under moisturizer) and I am trying to treat myself to a facial regularly.

I started walking every day (only on flat initially, approx. 30 minutes), doing more housework and arranged a trip to the hairdressers. By week six I felt ready to rejoin the human race and started driving again, enjoying some much needed freedom. In an effort to be entirely honest, I am still wearing the enormous granny pants and love them! I may never return to dainty knickers.

To celebrate reaching week 12 post op, I did a small hill walk at Glen Clova in Scotland. It was so hard, my legs felt like lead and I thought my head was going to explode I felt so hot. I cried, grumbled, swore and sweated profusely all the way to the summit, but seeing the view at the top filled my heart with so much gratitude as at my lowest I was so scared I wouldn’t see the view from the top of a hill ever again.

It is now 20 weeks since my operation, the awful pelvic pain I suffered for years has gone and the monthly period related roller coaster is gone. However no one told that I would not be back to normal by this stage. I assumed the opposite of being in pain was feeling good – but the reality is quite different. I still have tenderness in my abdomen (I am still not able to wear my jeans) and my stomach seems to drag downwards inside during the day, quite an unusual feeling. I recently asked a medically switched on family member when I would feel well again, she suggested that I might need to accept that “normal” wouldn’t arrive for another six months (i.e. one year post op!), and it will likely be a new “normal”. Judging by online forums, up to a year spent recovering is not unusual. I have realized that many women end up feeling embarrassed and frustrated at not being able to bounce back in six weeks, possibly due to unrealistic recovery expectations. I definitely don’t regret having a hysterectomy and I appreciate being free of the chronic pelvic pain that has dogged me for years and of course my enormous hard tummy. But, it has been a frightening year and I have at times felt that this dark tunnel of fatigue and discomfort had precious little light at the end of it.

Even now as I write this at week 20 post op, I’d rather be napping. I am no longer a morning lark or a night owl – I am instead a tired old pigeon. Recovery is frustratingly slow. At times the pain has been unbearable, the exhaustion debilitating and my mind feels befuddled by fatigue. In my experience women should be prepared to allow themselves far longer than six weeks to heal. During the initial six weeks, bed rest is so important for the abdominal muscles and surrounding tissues to heal, your body is going to be working so hard inside for months, not weeks. Be prepared for the real challenge to start when normal life resumes, people stop asking how you are and from the outside it is not obvious you have recently had surgery. I was only able to return to work at week seven because I have a desk job and the option of working from home to reduce commuting.

I encountered several unexpected challenges on my journey that are worth sharing as no one likes surprises, (a) The most unexpected challenge was allergic reaction to the Mepore self-adhesive dressing, the blisters were stingy, raw and seeping (and more painful than the 12 inch incision at times) and have left visible scars. I had no idea I was allergic to Mepore; (b) Being told that my CA125 levels were elevated and possible indication of ovarian cancer was terrifying. At the time I didn’t know that hormone imbalances can confusingly affect the results. Perhaps my brain switched off when I heard the “C” word, but my automatic assumption at learning the levels of CA125 protein in my blood were elevated was that I had cancer, but that was not the case; (c) Waiting for full pathology lab results following surgery took longer than anticipated. I was desperate to know if cancerous cells were found, this process took over three weeks (my delay in getting results was seemingly due to size of cyst removed and extensive tests required); (d) Two sections of my 12 inch incision were slow to heal (belly button and bikini line – natural skin folds) and I needed two lots of antibiotics to clear the infection; (e) The low mood and fuggy brain have been challenging. It’s a roller coaster. First few days after the operation I felt so fragile, emotional, couldn’t move and had lots of negative thoughts.

It is not easy asking for help continually, I struggled with that (I kept wishing my family would just read my mind). I have had lots of peculiar dreams since the operation, that leave me in an iffy mood the following day (in one my husband was running away with the Duchess of Cambridge, even now when I see her I think “humff, get away he is mine”!); (f) I must also mention my frizzy hair during flushes – not life threatening but a massive challenge nonetheless; (g) The significant changes in my body – I don’t feel like myself, or look the same and although my scar has healed well, it is big. My confidence at times is rubbish, I want to hide away under layers of clothes (the thought of a beach holiday makes me judder). I am hopeful my va va voom will return as the scars inside and outside repair themselves; (h) I still need to have cervical smears, didn’t realize that initially; (i) Finally – I will be on HRT until I am 50 years old (combined HRT, containing both oestrogen and progesterone) as there may be some cells present in the cervical stump which would bleed if I took only oestrogen. The HRT I am on is called Kliofem. Lots of HRT information available online but difficult to feel certain that I am on the right one for me, and feeling the best I can in my circumstances. The HRT world all seems very trial and error, which I struggle with. However three months since starting HRT I feel hopeful that Kliofem is going to be suitable, especially now that the nausea is under control (but there is part of my brain still worrying about the increased risk of breast cancer while taking HRT). If Kliofem too “strong” for me, then there is a gentler alternative, Kliovance.

Between learning about my giant cyst to having the surgery my head wasn’t an easy place to be. “Is it cancerous….if I have cancer, has it spread……how long has this thing inside me been growing….what caused it….I am 41 and about to jump into sudden menopause and start HRT, will my husband still love me or find me attractive…..will I grow a beard…..what if my bowels or bladder are damaged during surgery….will I see next year…is my life insurance policy up to date….will six weeks absence from work affect my career prospects”. Waiting on surgery was difficult and even though I was surrounded by people who love me, I felt alone and desperate to get everything in my life in order before my operation – just in case. I was thankful to not also be dealing with the upset of not being able to have children after the operation, as I dealt my infertility issue in my 30’s. On top of all that, I had recently lost a friend to cancer and her awful struggle was at the forefront of my mind.

I am impatient to embrace 2017 with open arms, although a few unexpected positives have come from my crazy year. The surgery has left me feeling very sentimental, I no longer keep things only for special occasions, I am currently undertaking a de-cluttering project in the house, I am chasing promotion at work, I enjoy thinking of ways I can make a difference and am planning lots of adventures. I am so grateful and lucky that my cyst didn’t rupture when we were on a remote Scottish island or up a hill, and I will never forget getting the news that I didn’t have cancer. Very. Very. Lucky. Girl.