Aged 12
Before I was 12 years old I was flat chested, skinny, sporty and confident but when puberty hit at the age of 12 it destroyed all of that. I know periods are never enjoyable but the first year was tough, I got DD size boobs within the year, was on my period pretty much all year round (except a couple of days) which were HEAVY and I would lose large clots. I would have to wear three really thick sanitary towels at a time and frequently changed them. My school uniform was blazer, shirt, tie, trousers or skirt so I decided to wear a skirt and two pairs of tights throughout the school year no matter how hot or cold the weather was, I didn’t want to wear trousers because I was paranoid that people would be able to see my pant and sanitary towel line whereas my school skirt was floaty and two pairs of tights was an extra barrier in case I leaked which I never did (close to though). I went to the doctors and they told me “it’s your age, you will grow out of it”. Not only was I on my period but also I was gaining weight, which meant my thighs would rub and actually bleed because they were being exfoliated against a sanitary towel, plus stretch marks on the boobs, which thankfully have lightened up a lot. I just didn’t feel good about myself.
Aged 13 - 15
After the dreadful first year my period calmed down and I had a regular period that latest two weeks but they were even heavier and really painful, not only that I would suffer with either diarrhea or constipation and bloating but it was better than being on a year long period. I went to the doctors and they kept telling me “it’s your age, you will grow out of it”. They put me on various medications to reduce the amount I bled (it didn’t work), medication that is specifically for period pains (also didn’t work), the mini pill and allsorts. Various doctors’ appointments with various medication but nothing happened so I gave up and just suffered, I just put on a face and tried to just breath through it. I would try and not go on sleepovers around my friend’s houses when I was on my period and missed out on a few different things because of my periods. I also started suffering with really bad headaches and migraines but again left it, the doctors weren’t able to help me previously so why would they be able to help me with this.
Aged 20
I can’t remember how old exactly but me and the family moved home as well as doctors surgery. I went for a check up and mentioned my really heavy periods and the doctor said he was referring me to the gynaecology department and as those words fell out of his mouth I burst into tears with joy and thankfulness, I felt like somebody was listening and believing in me.
Gynaecologist Appointment 1: I was advised to go on the depo provera injection so I did that and my periods were still heavy and painful but they went from 2 weeks to 10 days so that was a positive thing.
Gynaecologist Appointment 2: Three months after the first appointment I went back and the woman said to me "IT'S YOU AGE", I burst into tears when those words came out of her mouth, my friends who are my age are not going through this. The doctor must have thought I was having a break down because she then said "I think you should go to your doctors and ask to be put on anti-depressants as well as try yoga to de-stress and maybe try boxing to release stress", is this woman being serious. I walked out of that appointment and didn't do anything she suggested because I think she was taking the p***. I didn't want the sigma of being on anti-depressants, I didn't feel like I needed that, I needed somebody to believe in me and help me sort out my health issues. I know people get put onto anti-depressants and if they need them then take them but for me I was only down and upset because nobody seemed to want to help me, you don't put people on medication if it is not needed, I just needed my periods to be sorted out and that way I wouldn't be down, I would be more confident and I would get my life back.
Gynaecologist Appointment 3: Three months later I had spoke to a few people, mum's friends and bits and somebody told me about endometriosis so I did my research and ticked off most of the symptoms, I had all of them so when I went to the gynaecologist and saw another woman and I suggested it she went out and spoke to somebody higher up (the consultant - I think) and she came back in and told me that I should stop taking my depo provera injection and they were going to discharge me and if in 3 months time there are no changes then go to my doctor to get me re-referred to the gynaecologist - are you serious? That appointment was in September 2016 so I stopped the injections and my period stopped.
Aged 21
My birthday is in November so that’s why this is a separate paragraph but I fainted yet again so my doctor decided to look into it a little more. I had a blood test and the doctor referred me to the cardiology department because the three times I collapsed I felt winded before I fell whereas when I was a child I fainted a few times and I knew I would faint because I felt shaky, hot and fuzzy but these times were different.
The cardiologist did an ultrasound of my heart, an ECG and a 48-hour ECG and they came back clear/normal. The consultant then organised for me to do the tilt table test which by the way it was horrible, it seemed like such a simple thing to do but I started getting hot and flustered as well as bored and only managed to do it for 50 minutes instead of 1 hour. Now that came back normal so they planned for me to have the implantable loop recorder fitted so had to wait for that appointment to come through.
Now I had had some blood tests done because of the collapsing and also because I had been feeling exhausted and also I was becoming really forgetful which wasn’t like me and my doctor rang me up and asked if I could go back in so I went and he wanted me to go get another blood test to confirm something so he got me an emergency blood test and it confirmed that I was suffering with under-active thyroids which could explain why I was exhausted all the time, feeling down, feeling cold quite a lot which is not normal for me (normally I am hot), gaining weight and struggle to lose weight, dry scalp, weak hair and also memory problems. I was put on 25 micro grams of Levothyroxine but wasn’t the correct dosage but I couldn't have a higher dose until I had the looper recorder implanted because the meds could slow my heart. I had to wait months and months for the appointment for the implanted loop recorder but finally August 2017 I got the operation.
When it came down to the operation I was taken down and told to remove my top and put on a hospital gown, the woman doing the operation needed to get an even more of an expert to help locate where to put it because I have large boobs and high breast tissue they had to locate it in a different way or a different angle, I can’t remember but it took longer to do than it usually would have. I was told to lay down with my hands under my bum so I don’t lash out if it hurts and then they cleaned the area and injected the area to numb it, it bloody killed, the nurse later told me that the injection is the worst injection ever but I managed it. Prior to the operation they explained everything to me and told me that they close the area with glue and on the odd occasion they have to add a stitch, of course the glue didn't stick and one stitch turned into a few.
After the operation I had my dose of Levothyroxine doubled by my doctor and a blood test a while later confirmed that my new dosage is the right amount of medication for me so I will be on this medication for life. During the appointment with my doctor who confirmed I was on the right dosage he also spoke about my periods and he tld me to go back to him if I hadn’t had a period by October, e told me that could be the depo being flushed out of my body. Also in that appointment my doctor referred me to the Endocrinologist which I think was because of my periods as well as Neurology for the headaches. My period came back in beginning of November (NOTE: I track my period on an app called Pink Pad which is brilliant).
Aged 22 (NOW)
Now I am 22 and I have found all of the hospital appointment letters so I can be a bit more detailed in when and what the appointment was and how it went as well as go through my planner to see when appointments were.
1st December 2017 - CT Scan: I had a CT scan on my brain, which was organised by my GP.
December 2017: no period so back to not knowing.
16th January 2018 - Doctors Appointment: my GP wanted me to see him to make sure that I had got all of my appointments come through from the varies departments and to discuss how I am feeling, I mentioned I had my appointment letter for Endocrinology and Neurology which was quite close but I got my appointment for Cardiology which is the end of May - ridiculously long waiting time.
January 2018: no period again.
February 2018: had a period finally back, its still painful and heavy but it was ten days of agony.
2nd February 2018 - Endocrinology Appointment: my appointment took a long time, I went in on time and the doctor struggled to understand me (English wasn’t his first language) but he took me to see the consultant who said he will take on my case which I prefer because he is the main guy so I feel he would be more knowledgeable - I don’t know. He told me that I could possibly have Cushing’s Syndrome which is a condition caused by having too much of a hormone called Cortisol in my body and if it is not treated apparently it could be serious so I had to have a blood test there and then was given a big bottle thing to do a 24 hour urine test them Monday to Wednesday take tablets which had to be taken at VERY specific times and then back to the hospital for a blood test. The consultant also told me that I would be tested for polycystic ovary syndrome which saddened me because the infertility rate with polycystic ovaries is very high plus `I had previously read that having underactive thyroids can cause pregnancy problems. I know you shouldn't go on the internet and search up medical conditions but I wanted to learn more about Cushing's Syndrome and I started watching a video on YouTube only to find out that it wasn't a doctor talking it was a vet so that made me laugh but when I got onto Cushing's Syndrome within humans it’s uncommon and mainly caused by steroid usage which I haven't used but it's vary rare and is usually due to either a growth/tumour in the pituitary gland in the brain (I instantly thought CANCER when I saw tumour and that scared me because I had just lost a really dear friend to cancer a few days before this appointment and I saw him get weaker and weaker and I didn't want that) and it could be a tumour in one of the adrenal glands above the kidneys, the tumours are usually non-cancerous in other word benign (I should have read on and not panicked) and it is most common in young women (I am a young woman). Symptoms is increased fat on your chest and tummy but slim arms and legs (I am fat), build up of fat on the back of your neck and shoulders (I don't really know if I have this), red, puffy, round face (yes, my face is puffy and round plus my skin tone is red, no need for blusher when I do my makeup), skin that bruises easily (yes, over the years I have got over my phobia of needles with the amount of blood tests and after ever blood test I bruise really badly and it lasts for ages, I have bruises on my legs and arms and I don't recall banging or bumping myself), large purple stretch marks (I am going to be honest now and I don't care anymore what people think but I have got stretch marks at the back of my armpits, biceps and on my stomach), weakness in your upper arms and thighs (I feel sometimes that my arms in particular and really heavy and I can't lift them up), depression and mood swings (I get down quite often, cry at the adverts on televisions, cried when I read Me Before You by Jojo Moyes which I never would have years ago), diagnosis is through urine and blood test which I was about to do and then I had to look at how it is treated so if it is caused by a tumour they will have to remove it surgically, radiotherapy and even medicines. Of course I had to research radiotherapy and the side effects which are sore and red skin, feeling tired (how much more tired can I get), hair loss (I know this is bad but I started crying then, I know the treatment will be there to help me but I don't want to lose my hair and I know that sounds really bad but I already feel like the odd one out), feeling sick (great), lose of appetite (might lose weight - I JOKE, I need to find a funny side to it otherwise I will end up being depressed), sore mouth and diarrhoea (lovely) and I know at this point I hadn't been diagnosed but I needed to be prepared. I started getting angry whilst I researched about PCOS and Cushing's because there are people I know that don't deserve to have children, they clearly don't care and put their kids first and here I am with the possibility of never being able to have a child and then with Cushing's.
3rd February 2018 - 24 hour urine sample: the large bottle thing they gave me had acid in it to preserve the urine; my body decided that it wouldn’t cooperate so I barely peed that day
5th February 2018 - start the tablets: 9am I had to take the tablet, 3pm I had to take the tablet and 9pm I had to take the tablet.
6th February 2018 - tablets continue: 3am (YES AM) I had to take the tablet, 9am I had to take the tablet, 3pm I had to take the tablet and 9pm I had to take the tablet.
7th February 2018 - took my final tablet at 3am, endocrinology blood test appointment at 8:45am then off to my first Neurology appointment with the main guy there himself. The consultant has booked me to have an MRI so the letter will be sent to me, he also put me on a trial pack of Amitriptyline tablets which will help with the migraines and headaches plus it will help me to sleep. I was told for the first two weeks only take one tablet then for four weeks take two tablets. Now I thought I would go into more details about the migraines and headaches I was having very frequently, they wouldn't be caused by one thing in specific but whenever I tried to exercise or if I would jump up and down I would get the worst pain in my head, a few times it has caused me to be sick but I could wake up and get these pains in my head, I could have been sitting having lunch or at my computer working and these pains would come now sometimes it felt like my brain was pulsating and was hitting my skull and felt like my brain would burst through my skull, sometimes it would be a pain at the back of my head and my head would feel heavy and sometime it would be my whole head and I would have to close my eyes or be in a dark room to reduce the pain. It is the worst.
A few days after taking the tablets I read the information inside the box which I normally do (I want to know what side effects could occur) but the family and friends were mourning so I think I didn’t bother about the information leaflet but when I did manage to read it I found out that they are antidepressants which I wasn't informed about so I have stopped taking them and contacted my doctors surgery and I had a phone call appointment with my GP to discuss the meds and he told me that Amitriptyline is not used as an antidepressant anymore, he discussed it in further details and I started taking them again.
15th March 2018 - EEG Clinic: I had an EEG done which was okay, if you don’t know what it is, it’s these little pads connected to wires and machines put all over my head and I had to sit and do some breathing exercises as well as flashing lights and relaxing and bits. I maybe lazy but I can’t sit still for long.
25th March 2018 - I opened a letter that arrived a day before, the letter was from the Neurology consultant that I saw, the letter was being sent to my doctor, the endocrinology consultant and the cardiology consultant, the letter is a review of our appointment me and him had and it saddens me to read 'I am not seeing her again but I will write with the results of the tests from the virtual clinic', has he gave up on me after just one meeting, has he discharged me from Neurology. Plus he booked me in for a MRI which I got the letter a week ago and when I read it I had to ring up and tell them that I have a loop recorder in which meant the appointment was cancelled and NEVER should have been booked because of that and I now have to go to the pacemaker department to get some test done or something. So this consultant has given up on me and booked me in for a test that could have caused serious problems, now this consultant should have been aware of my loop recorder because it is in my notes but also I mentioned it so this doesn't give me hope. I continued reading 'I have initiated her on Amitriptyline......I would be grateful if this could be continued in primary care if you find this helpful' - I don't find it helpful, this medication has done nothing so what now (I have booked an appointment with my GP who I respect and trust that will tell me the truth). Also in the letter 'Of note the tilt table test mentions that she has been having disordered breathing and this is worth addressing directly' - WHAT?! What does this mean? I had a bit of a panic attack at the end of the test because I was getting hot and flustered but during the test it was fine I thought. In the letter it also says 'I am certain that her headaches are migrainous and the syncopal episodes are vasovagal / neurocardiogenic syncope' - what does this mean? People say you shouldn't Google things but I don't understand this and he doesn’t seem very helpful so:
- Migrainous: when you Google it comes up with Migrainous Neuralgia which is also called cluster headaches and regular painkillers, such as paracetamol, aren't effective (TRUE for me) so treatment options are sumatriptan injections, sumatriptan/zolmitriptan nasal spray or oxygen therapy.
- Syncopal: a medical term for fainting, loss of consciousness due to a sudden decline in blood flow to the brain.
- Vasovagal / Neurocardiogenic Syncope: occurs when you faint because your body overreacts to certain triggers (extreme emotional distress or sight of blood) - are you kidding, I didn't see blood and the sight of blood doesn't bother me (my blood or other people's blood) and I wasn't extremely emotionally distressed when I collapsed.
I just want to understand what the next step is and did this consultant think my headaches occurred when I collapsed because God Lord I would be constantly collapsing.
27th March 2018 - Endocrinology Appointment: I am happy to say that my Endocrinologist consultant told me that I don't have Cushing's, my hormone levels are at a healthy level. We discussed my other issues like my headaches and migraines and he looked at the letter the Neurologist had sent which I got and my Endo doctor wants me to try and push for another appointment because he thinks it is something with a long name which causes migraines/headaches as well as weight gain which is another issue of mine. If I don't get it then I should push for another opinion at another hospital in another city. He will send a letter to the Neurology but if I mention it to my GP to also push for it. He also said he is sending a letter to the Gynaecologist to refer me there but I am not pleased with that and told him about my experience there before which he shocked by so he will mention PCOS. I really don't want to be at that department, there was such a long wait there. I will have an appointment with my Endocrinologist in a years time. Now I know that I may have overreacted and I should have all internet removed from me after appointments because I always search up the worst case scenarios like the Cushing’s but I have to be prepared for the worst. I am happy to not have it but kind of upset that I still don’t have an answer and it’s the thing of will I ever know what is wrong with me. I feel like I have suffered with many things for years and most of them in silence, I remember telling a family friends my issues when we went away and people never knew, people close to me never knew I was suffering, I most of the time have either a natural resting bitch face or I try to smile but deep down I just feel like screaming ‘SOMEBODY HELP ME'. I just want to thank that doctor, I already have my appointment for a year’s time and also the letter that he has sent to my doctor with the notes he made from that appointment came within days afterwards.
8th April 2018 - MRI Appointment: I can't believe I had a hospital appointment on a Sunday but I did. I went into my appointment and made it perfectly clear that I have an implanted loop recorder in me just so they were 100% sure and aware of it. Before I went to this appointment I spoke to my little brother Mowgli who has recently had a MRI and he explained to me and he also mentioned that he fell asleep whilst having his MRI. I went into the appointment and was told they had to put a cannula into my arm which was a shock to me so I had that told me to lie down on the bed, I was told that I would be in the machine for 30 minutes then they will put something through my cannula and then put me back into the machine for another 30 minutes. I got onto the bed and couldn't get comfortable but couldn't move because the hospital staff told me to be really still. I kept trying to calm myself down and try to relax so closed my eyes for a bit but kept opening up and feeling panicked. Fact about me I can't lay flat, I don't know if it is me having large boobs and feeling slightly suffocated or something else but I have to have quite a few pillows on my bed otherwise I feel odd so laying in a machine which is making a lot of really loud but random noise of course I couldn't relax plus the machine kept moving which irritated the arm that the cannula was in because it was being tugged and that was making me feel sick. I lay there wondering when somebody was coming to put the drug or whatever into the cannula because I felt like I had been laying there for ages. Finally the gentleman came and put something into the cannula which I felt in my arm, he asked if I was okay and I mentioned that I was getting pins and needles in my hands so he put some padded blocks down for my hands to rest on which did help. The next half an hour flew by because I fell asleep, how I managed to do that with the racket going on I do not know but I did. I was so grateful to be able to stand up from that bed and get out of that room. The guy there said that my results will be with my doctor within two weeks and I asked if that was my GP and he said no my Neurology consultant. When I got to the car I got thinking about what he said, I can't remember now but he mentioned when I go back to see my Neurologist - I won't be seeing my Neurologist if he had a choice. Is this test pointless?
16th April 2018 - GP Appointment: I wanted to discuss with my GP what the next step with the Amitriptyline tablets was, now because they didn't have much of an effect on me we have decided that I won't use them and wait for another letter from Neurology but if I don't get a letter then go back to see him.
9th May 2018 - Cardiology Appointment: this appointment was originally supposed to be November 2017 but due to work commitments I wasn’t able to make it so I rang a week prior to the appointment and cancelled it like normally people should do and it really grinds my gears when people don’t. Anyway they gave me another appointment which I think was supposed to be January or February but I got a letter saying they had to delay it due to high amount of cardiology cases so it got moved to 30th May 2018. My GP wasn’t impressed with this date and neither was I so we agreed we would try and bring it forward. A month or so after that letter I got another one saying the same thing and they moved it to 11th July 2018, not good news but I rang up on 28th March and asked for a new appointment and managed to get this date. I had to sit and wait an extra 1 hour and 15 minutes because they were behind only to be told that he doesn't think the collapsing was a cardiology problem and was actually a neurology problem so I need to talk to them (that will be a challenge). I have an appointment with cardiology in a year’s time.
If you have managed to read all of this then thank you and 'oh wow' how long did it take you to read, I want this blog to be more in to depth about me and for people to understand me, if you are a close family friend to me and see a picture on Facebook of me asleep then there might be a medical condition causing this or I might be a lazy bum. I also hope this makes sense too.
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