Having an ovary removed at 21 – My Story

Laparoscopic right salpingo oophorectomy – I believe that is the “medical term” for it, and on the 08/11/2018 the NHS gave me my very own experience of it.

I should probably take this time to say how grateful I am for the NHS, and how amazing the staff who work for the NHS are, from the paramedics to the porters, HCAs to surgeons… 
every single one made my journey bearable and I am eternally grateful.

I’ve posted previously about my battles with endometriosis and PCOS (polycystic ovarian syndrome) and on the 18/10/2018, my consultant and I came to the mutual agreement that it was time to say adios to my right ovary and fallopian tube (the worst out of my two ovaries, as over time my left ovary has been rather kind to me over the years).

However the week of the 01/11/2018 I had a pretty aggressive flare up, it was starting and stopping but I dismissed it, after all… I have no time to be ill, between work and my son, a trip up A&E would never fit into my schedule, as the week progressed friends urged me to go to hospital but in my stubbornness I declined (because I was clearly handling the situation so, so well). I think I mentioned to the mummykind girls all week how the pain was p*****g me off and I didn’t have time for it, as well as to Char and a friend by the nickname of Moody.

Saturday the 3rd came and I was on a half day at work, I remember going into work snappy, tired and with barely any energy where the pain was getting worse. Char and Moody had both had enough at this point with Char taking on the maternal role and telling me I needed to call someone and I believe Moody’s words were ” then stop f*****g moaning about it and go to the hospital” – bit harsh but had a point. Looking back perhaps everyone was right, If I listened and dealt with the situation properly rather than sticking my head in the sand, I might not have needed my elective surgery brought forward.

That afternoon I got home and the pain had got so severe I was on the sofa crying, I couldn’t sit up was just scrunched up with a hot water bottle (this was after taking my oramorph – oral morphine). I rang 111 who sent an ambulance, then after a trip to A&E, the on-call gynaecologist did an internal examination of my ovaries.

Worst.
Experience.
Ever.

I remember letting out this high pitched yelp as she said “hmm well it doesn’t feel twisted but I think I can feel a cyst, your ovary felt very bulky” she patted my arm and said she would admit me and book me for a scan.

The pain got more intense and more severe, and my blood pressure dropped as a result. I had an ultrasound the next day with two sonographers who did both an external and internal scan but wouldn’t tell me much, they just said there was lots of free fluid and that my right ovary was bulky. As they spoke in hushed tones I was left unsure of what was going on.

The next day I was greeted by a familiar face, my consultant. The man who had carried out all my gynecological procedures since I was 16. “Hello Amy, how’re you,” he greeted. “I have reviewed the scan, and I think the best thing to do now is bring your surgery forward, I have scheduled it for Thursday, however if you get worse it will be an emergency procedure.”

It became a waiting game, friends from work visited, mummykind friends visited and kept me entertained with gossip and laughter. The night before the operation Harriet even came up to help me wash my hair and shave my legs, and I put my new nighty on from Charlie… I was ready. My ex had brought Oliver up to see me, as we agreed he would have Oliver for the next week where I wouldn’t be able to  lift and needed to recover.

The day of my operation arrived and I was a bag of nerves. A friend visited in the morning with knickers and pads for me but after she left the reality hit me, I was on my own.  I would have nobody holding my hand as I went down to theatre and nobody waiting for me when I was out, this was something I had to face and deal with on my own.

As I got wheeled down to the prep room by two theatre assistants, one who was a very bubbly man and could tell I was anxious. I could feel myself panicking, the anaesthetist who I had met previously greeted me and the first thing he asked me to do was to slow my breathing down, I could feel myself going into a panic attack but I couldn’t stop it, I had no control.

The anaesthetsist said to me “How old is your son Amy? Who’s with him at the minute?” As I replied I didn’t realise those questions were him calming me. He made me talk about the one thing that could shift my focus, then he said, “okay Amy, I’ve just given you a strong painkiller so you might feel a bit drowsy but that’s fine,” and I felt myself sinking, and no matter how hard I tried to fight it… I lost.

I woke up in recovery and completely freaked out, I tried pulling things off and sitting up, then started crying for literally no apparent reason, however my previous surgeries had taught me anaesthetic makes me really emotional and
teary. The recovery nurse was sweet, she helped me sip water and gave IV morphine where I was tender.

A week on and I’m back at work, I’m still sore and not completely over the mental side of it, whether it was planned or not the reality is my right ovary and tube is gone and over years it is likely my left will go too. The reality has hit me that Oliver is likely to be my only child, and I lost so much time with him as a newborn due to postpartum psychosis that I’m scared I won’t get that chance again. However, if having my right ovary removed gives me a better quality of life then that is something I need to be grateful for and come to terms with. I’ve also discovered that phantom pain is so real and so, so weird. I can feel normal period cramps on my left side however my brain still associates pain with the right hand side, despite the fact there is nothing there, but I am only 1 week post-op so prehaps I need to give myself some more credit as I am already back at work.

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Endometri…what?

Endometriosis…you’ve either heard of it or you haven’t. I had never heard of it until I got diagnosed with it that it. Now I have mentioned about endometriosis before in my post on “being a chronically ill parent“… But this post is dedicated to endo, with coping strategies, tips and tricks.

According to the NHS, “Endometriosis is a condition where the tissue that lines the womb (endometrium) is found outside the womb, such as in the ovaries and fallopian tubes.”

My story with endometriosis (or endo as I prefer to call it) I guess started at 8 when I started my periods (young, eh?). I remember being so confused at that age, and I remember one thing that really upset me was not being able to do my swimming lessons at school (there was no way at 8 years of age I was using a tampon). 

As I grew older my periods became more and more painful and my mum would say; “welcome to womanhood my baby, it’s normal for it to hurt,” and one day I came on and was in so much pain that I couldn’t move from the sofa. I was crying in pain… my Nan insisted I saw a doctor who didn’t say much but prescribed mefenamic acid for the cramps. I was offered the pill to regulate my periods but my mum said no as she didn’t feel going on the pill at 13 was right for me, despite the fact that I was bleeding for 3 weeks of the month and had no pattern at all. Mefenemic acid helped to ease the cramps for a year or two.

At 16, I was admitted to hospital (yet again) and this time the paediatric doctors refereed me to Gynaecology. Two consultants came and sat with me and asked a series of questions about my periods, my sex life and my lifestyle. I answered as honestly as I could… 

“yes my periods are irregular, yes they’re painful, yes they’re abnormally heavy and yes sex is painful”

The two consultants nodded at each other and proceeded to say – “textbook endometriosis”


“We’ll need to do a laparoscopy to confirm but I think that’s what we’re looking at”… They didn’t really tell me much about the condition they just told me that I would be having surgery. Naturally, I went away and researched it myself. Endometriosis UK were fantastic at informing me, and it finally all made sense. The reason that my ultrasounds were coming back as clear is because endometriosis doesn’t show on scans; only through surgery can you be diagnosed with endo.

My surgery date approached, I counted back from 10 and the next thing I remember was that I woke up with my consultant saying, “Miss Simkins…. Miss Simkins, wakey wakey.” 

I opened my eyes to see him stood there, I tried to sit up but felt like I had been stabbed in the stomach. 

“No no no, don’t try and do that just rest!” He said. “So the operation was a success, there was the odd complication but we sorted that, I did find endometriosis but I’ve treated it, though the condition isn’t curable so it’s likely that it will grow back.” He proceeded to show me the pictures of my surgery and I saw what endo looked like – it was fascinating to see what had been causing me such unbearable pain. “So we’re going to start you on something called Zoladex and HRT and I’ll see you in clinic in 6 months.”

Zoladex was a weird one. I had a love/hate relationship with it. 

Zoladex is an injection that triggers a chemical menopause, so all the time i was going through chemical menopause I wasn’t menstruating therefore no periods = no flare ups (in theory)… BUT with this came all the menopause side effects; hot flushes, weight gain, acne etc., plus it was a tad embarrassing to be going through menopause at 16, I guess, but it helped… Massively. But, like all good things, it came to an end. The maximum amount of time that you can stay on Zoladex is 6 months, but I’ve had 3 rounds of 6 months sessions in total now.  

My periods are still extremely heavy and painful and my flare ups are now so painful I have to rely on oramorph and tramadol as well as seeing the chronic pain team for tender point injections. Though, when I have my monthlies I subscribed to a company called Pink Parcel who make my periods less stressful and I look forward to my period just for my box of goodies!

My battle with endo is ongoing, I was later diagnosed with PCOS which i’ll save for another post. I urge anyone with endo like symptoms to see their GP. Heavy and painful periods are NOT normal and you don’t have to suffer. 

On the 7th of July Sarah and I from mummykind will be doing a live Q&A session on Facebook, so if you have any questions on endo feel free to inbox us them or even comment them. I’ve made it my personal mission to raise awareness on Endometriosis, I’ve previously had a letter from David Cameron himself regarding the matter, I won’t rest until young girls are educated properly on women’s health!

Being a chronically ill parent

So it’s no secret that at 16 years of age I was diagnosed with endometriosis and a year later I was diagnosed with PCOS (polycystic ovary syndrome). Now I’ve always been very open in discussing my health as I always try to raise awareness of Endometriosis.

Before I go any further I should probably give a brief outline as to what endometriosis is, this being said I’ve decided to  include Endometriosis UK’s take on endo.

Endometriosis (pronounced en- doh – mee – tree – oh – sis) is the name given to the condition where cells like the ones in the lining of the womb (uterus) are found elsewhere in the body.
Each month these cells react in the same way to those in the womb, building up and then breaking down and bleeding. Unlike the cells in the womb that leave the body as a period, this blood has no way to escape.
It is a chronic and debilitating condition that causes painful or heavy periods. It may also lead to infertility, fatigue and bowel and bladder problems. Around 1.5 million women in the UK are currently living with the condition. Endometriosis can affect all women and girls of a childbearing age, regardless of race or ethnicity” For more information, please feel free to click the link above which takes you to Endometriosis Uk’s page.
Endometriosishas always had a hold on my life, with frequent hospital trips and stays, but I never once stopped to think how it would affect me being a parent, after all I never thought I would have a child of my own naturally, and it was always something that played on my mind.
My pregnancy with Oliver was far from easy as I’ve mentioned in other posts, but I still had countless doctors say to me, “there is a myth that pregnancy can cure endometriosis”, which gave me hope, except it was just that…a myth. Oliver was about 3 months old when I had my first severe flare up following his birth and I remember sitting in an arm chair with one paramedic tending to me, and the other entertaining Oliver. “Your little boy is fine Amy, don’t worry. Focus on yourself and take deep breaths”. I was doubled over in pain crying, and I had Entonox (gas and air). I was admitted to hospital and spent my first few nights without my son, except not for positive reasons. My mother-in-law at the time was supportive, helped take care of Oliver and even brought him up to see me. I remember laying in my hospital bed thinking, “I have no idea how I’m going to make this work”, as Oliver cuddled up to me in bed playing with my IV lines.
A year on and this blog post today is brought to you by me sat at home after being sent home from work due to a flare up. I can’t begin to describe a flare up…it’s one of those – if you know, then you know – sort of things. When having a flare up, my body is left drained. I’m left feeling sore, empty, nauseous, tired and in horrible pain. I could sleep 12 hours straight with a flare up and still wake up feeling like I’ve barely slept, and with a 1 year old thrown into the mix, the challenges are insane, Though I am very fortunate in the sense that Oliver is a really good boy and will happily cuddle up with me and watch Disney films, as well as having incredible family members and amazing friends who always offer to help. So here are some top tips for being chronically Ill and a mother.
1)      Take your time, try not to rush around as this will stress you and baby out…resulting in the flare up getting worse ( we all know stress is the biggest cause of feeling unwell or run down)
2)      Don’t be ashamed to ask for help, being a mother is challenging enough let alone with a chronic illness.
3)      Find a good support group. I’m part of a few support groups for my health and always find it comforting knowing there are people going through similar situations and they can sometimes give suggestions to what things work for them.
I think the thing I struggle with is stepping back and admitting some days that I’m not well and that I need help. I have oramorph (liquid morphine), Morphine patches, Tramadol and diazepam prescribed for my flare ups, however I really don’t like taking it when Oliver is with me, because the minute I take it, I need someone to help me with Oliver.
Although being a chronically ill parent is far from ideal, it just makes me that little bit stronger, a little more determined and ultimately more accomplished. I won’t ever let my illnesses affect my parenting skills, though when I’m older I do 100% expect Oliver to let me live with him where he can cook me breakfast everyday and drive me everywhere when I don’t feel well.
So to all you chronically ill mums out there, keep doing what you’re doing. Keep pushing forward because you’ve got this, your health does not and will not define who you are as a parent.