This post is lengthy, you have been warned. You can skip a few paragraphs down to the diagnosis but if you are a woman, i really recommend you read it all as these are things I wish I had known before I was diagnosed that would have really helped. I have tried to keep it as short and to the point as I can.
I was not going to talk about this until it was all over, because a lot of things were uncertain and I was not sure if this is something I felt appropriate to talk about so publicly as it is a VERY personal issue to me and only a handful of people know. I was just going to wait til I was out of hospital and the surgery was done and just be like ” Oh hey, guess where I have been!”…But, then I thought that there is actually a chance that maybe some one else is going through this, has been through this or maybe I could help someone going through something similar as when I was going through this in the beginning stages, nobody had a clue what it was which was a huge issue as it could have been helped a long time ago. It is also March, which means it is Ovarian Cancer Awareness month, so this feels like the right time to bring up what I am going through right now. I do not have cancer, but this health issue has made me very aware of it and you will soon see why. Also, I want to document my experience with this health problem, as it has changed my outlook on my own life completely as I have been forced to think about some things that I never had before. Here is my story; it is a long one and if you are faint of heart then leave now because surgery and periods will be spoken about!
My Health Background and when I noticed something was wrong.
Right up until the age of 19, I had never had any physical health problems. I was active, healthy and fairly normal. However, I did have really painful periods, but I didn’t think anything of it because as a women, its just something we go through, it is not pleasant but we buckle through. However, growing up I had a whole host of mental health issues. I had very bad anxiety, panic attacks and severe depression (all of which I do not have anymore), so my hormones were all a bit dodgy. Anyway, when I reached the age of 18, something was different, but at this point I didn’t really know what.
I am naturally a very petite person, so any weight gain or change is very obvious. I noticed that my tummy was becoming a bit hard. Not muscle hard, it was solid like rock. You couldn’t push it at all. I was also becoming a bit short of breath more often and I started getting very bad back pain, but again I put this down to hormones and natural changes in my body along with not so great mental health. Nothing was too out of the ordinary, so i ignored it. However, when I went to University, everything seemed to just blow up in my face.
My stomach seemed to balloon. It was very distended and bloated in appearance and I honestly looked pregnant. I put it down to stress and a change in diet, but as the distension would not go down, I went to the doctor, because normally my tummy was very slim in appearance and also I was getting severe pain, and I mean severe. I spent a lot of nights with hot water bottles wrapped around me to ease the pain. I would actually be doubled over in pain, but as it got worse nearing my period I didn’t think it was hugely abnormal still and also due to the increased stress in my life, i thought it could be that also, but I went to the doctor regardless in January 2015.
My doctor examined my tummy, asked if this was normal distension for me which I said “yes” to of course and he told me it was likely IBS and possible gluten intolerance and prescribed me laxatives… what. Seriously? Okay. He was a doctor and I just agreed with his diagnosis and went home. I never took the laxatives though. I had an instinct that this wasn’t ibs, but I carried on with my life and avoided gluten as much as possible. Admittedly, this did help me drop a lot of freshers weight gain but that is about it. My tummy was still distended and I was sure it was getting worse, but I lived with it for a good year.
Fast forward to April 2016- With a new found motivation and drastically improved mental health, I dropped out of University and moved back home to work. I got a job in a lovely special needs school and I forgot about my health issues. I am now 20 years old and I turn 21 in April!
When it all kicked off- December 2016
Over the year, I noticed things about me that just really were not normal. The distension never went way, I had to go to the toilet all the time, I felt very lethargic and I was getting full very easily. It was persistent and nothing I did helped it.
One morning in December last year, I went in to work and to my classroom to set up. All of a sudden at 9am, I got crippling pain shooting through my right side. It was very bad and nothing like I had experienced ever before. I knew for certain it was abnormal as did my work. I went straight to my hospital’s walk in centre and waited to see a doctor.
When I eventually saw the doctor, he examined my tummy and said, “Thank god if this is IBS, because it is not like any IBS i have seen before.” So, i knew something was up. He was a lovely doctor and he ran blood tests, urine samples and all the normal health checks, all of which were completely normal and healthy. He did not know what it was, so he referred me to another doctor at A&E.
I saw a few doctors and had an Xray of my abdomen and pelvis and was essentially told it was constipation and he gave me laxatives. I HAD LITERALLY JUST TOLD THEM I WAS REGULAR, BUT WHATEVER. They sent me home with very strong laxatives which I took but they did absolutely nothing, which i thought was a little weird… However, they were going to see me in January to do a check up. Which is when I started to get the help I really needed.
My diagnosis-February 2017
The doctor I saw was the best doctor I had seen yet. He was a colorectal surgeon, and he said its not IBS and that I looked as if I was late in pregnancy. He was honest and blunt, which I really liked. He booked me in for a CT scan as soon as possible and he ran some more blood tests. My bloods were normal again, but my CT scan was not. In fact, it turns out there was a whole lot going on and this is where it all got a bit overwhelming and scary for me.
My CT scan showed a very large cyst on my left ovary. By large, I mean absolutely massive and it takes up most of my abdomen. On my right ovary, I also have a large cyst, but nowhere near the size of the left. My kidney has been affected and my uterus and bowel have been displaced from being pushed. This is what causes the constant discomfort I am always in, the back pain I get a few times a month and of course, my distended stomach. So, i need surgery to get it out.
My Surgery- Open Laparotomy, Ovary Removal and Stent Surgery.
I am currently on the urgent surgery list, which is anywhere from a few days time to a couple of weeks time, so i am a bit on edge right now as I am still waiting for a date. I am having a couple of things done. The main surgery is called a laparotomy. It is an open surgery where a surgical incision into the abdominal cavity is made, for diagnosis or in preparation for major surgery. I will be having my left ovary and tube removed and of course they will remove the cysts. I will also be having a stent placed in to my ureter to help my kidney as currently it is not working the way it is supposed to due to the obstruction caused by the cyst. The good news is that my doctor is 99.9% sure it is not cancerous, so I am so blessed. So incredibly blessed and lucky. My heart breaks for those with cancer and honestly it is the scariest thing to go through. When my doctor said this, I broke down in tears, for my own relief was some one else’s heart break and it was incredibly overwhelming.
Having one ovary removed does not affect fertility. However, the bad news is that there is a chance I will lose both of my ovaries. This has been the hardest thing for me to come to terms with as obviously, losing both ovaries will cause me to be infertile and force me in to early menopause at the age of 20. My doctor wants to save one of my ovaries if he can and he seems confident about it, however I have been made aware that I may lose both and it is very upsetting and stressful. I am trying to remain positive and I have the utmost faith in my wonderful surgeon and hospital. Other than this bump in the road, this whole experience has made me realise just how lucky and blessed I am, not only for my otherwise good health, but for the people I am surrounded by.
Awareness- Ovarian Cysts and Cancer
March is Ovarian Cancer Awareness Month- Click here for more info. Only three per cent of women confident of spotting a symptom of ovarian cancer. With no screening programme and no national awareness programme (such as Be Clear on Cancer), raising awareness is vital.
Ovarian cysts are very common and do not usually cause symptoms. Large cysts are not that common, but most women will develop a cyst in their life time and they normally go away naturally and without treatment. However, this whole thing has made me very, very aware of ovarian cancer and just how easily it is missed. So, I am making it my mission to raise as much awareness as possible.
Every year in the UK, 7300 women are diagnosed with ovarian cancer. Cysts in pre-menopausal women are not known to increase the risk of ovarian cancer, though can produce symptoms similar to those for ovarian cancer so it is ALWAYS worth going to the doctor and having a check-up. Never ignore anything you that is even slightly abnormal. It is highly unlikely you have cancer, but being aware is very important.
Women over the age of 50 have a higher risk, and most cases of ovarian cancer occur in women who have already gone through the menopause. More than half the cases of ovarian cancer diagnosed are women over 65 years. Although it is not common for younger women to get ovarian cancer, there are instances of ovarian cancer in pre-menopausal women; 1000 women under the age of 50 develop ovarian cancer every year which is why it is important that all women should be aware of the symptoms of ovarian cancer. This is especially important if women have a family history of ovarian or breast cancer.
The Symptoms to look out for:
- Persistent pelvic or abdominal pain (that’s your tummy and below)
- Increased abdominal size/persistent bloating – not bloating that comes and goes
- Difficulty eating or feeling full quickly
- Needing to wee more urgently or more often than usual
- Occasionally there can be other symptoms such as changes in bowel habits, extreme fatigue (feeling very tired), unexplained weight loss or loss of appetite.
- Any post-menopausal bleeding should always be investigated by a GP.
Symptoms will be:
- Frequent – they usually happen more than 12 times a month
- Persistent – they don’t go away
- New – they are not normal for you and may have started in the last year
Please help me share awareness by sharing this post. This really means a lot to me and I really want to raise awareness. If we all join together, that may actually be possible. I will keep you all updated with my journey. Thank you for reading!