PCOS: My story from diagnosis to IVF

Background

Me and my husband were married in 2012 and since the wedding decided to try for a baby. My symptoms seemed to be exasperated by the fact I was no longer taking contraception. Before conceiving I had been on various forms of contraception since the age of 16. I had started early because of my terrible terrible acne and the doctor thought that the contraception pill might help (it didn’t). To be honest the doctor could have probably diagnosed me way back then but because a lot of the symptoms of PCOS seem ‘similar’ to puberty it is usually dismissed.

Between the ages of 18 and 21 I was using a contraception called the implant. The first was amazing zero visits from aunt flow for a whole 3 years. The second implant was evil! Within 6 months I had gone from a slender size 8-10 to a 14. I was really struggling with the weight so I went to the clinic and was prescribed a wonderful pill called Yasmin. Although it doesn’t actually make you lose weight it doesn’t contribute to weight gain so your weight loss feels easier. I shrank to a size 11 within 9 months. Unfortunately, at the time of wanting to get a repeat prescription I was suffering from a terrible headache (long day at work) nevertheless the nurse refused to prescribe Yasmin again saying it could cause blood clots and headaches are first sign. So with 6 months until my wedding and freaking out about my wedding dress I was on some other random progesterone only pill. The weight crept up but thankfully not too much so my dress still fit. As soon as the wedding arrived I took myself straight off the pill and we began our baby journey.

Diagnosis Stage

It had been a little over 16 months since we started for a baby and the visits from aunt flow seemed to be non-existent. Lets just say I was a woman possessed and Boots owe me shares in their pregnancy tests for the amount I bought. Little did I know during this time that my life was about to change.

It all started back in November 2013 I was sat on the train to London and got this awful feeling in my left side. As it was Monday morning I just simply put it down to rushing around in the morning and possibly having a tad too much to drink over the weekend. By lunchtime I was starting to feel really unwell. I was delivering some training to my colleagues and I just felt awful. My side was really hurting to the point of needing pain relief (something stronger than the paracetamol I had in my bag). I rattled my way through the training and hopped on an earlier train. I literally felt like I was going to be sick every time I felt a pang of pain. My skin was turning white and I just generally felt unwell. My husband picked up at the train station later that evening and noticed how white I looked.

On the Tuesday morning I was sat in the doctors surgery rolled over hugging my left side. It felt as though someone had stabbed me and was twisting the knife. The pain started to spread from my left side across my lower abdomen. The doctor was concerned that it may be an appendicitis but been one of the small minority whose appendix is located on their left. I was sent home and informed to phone 999 if the pain worsened  in the next couple of hours and if not return to the GP surgery first thing in the morning.

Wednesday, the pain was still bad but not enough to go to hospital. The doctor still wasn’t happy and I was sent to the hospital anyway for a scan. I had both an ultrasound scan on my kidneys to rule out kidney stones than my first of many internal ultrasound scans. The internal scan showed a large cyst on my right ovary – yep you read that right my right ovary not left where the pain was. 4 days after the pain had started and the scans my GP referred me to a specialist. I was one of the lucky ones who was referred straight away to gynecology. My consultant was lovely he gave me a butt load of prescription medication for the pain and booked me into surgery for the March. OMG surgery – I have never ever had surgery, I was proper panicking. What the hell do I expect. I quickly took to google searching endless subjects on laparoscopy and cyst removal. I found lots of forums with some not very helpful commentaries on their experiences. I even googled things like can I die from a general anesthetic. My husband kept telling me to calm down but it didn’t help. In the run up to my surgery I was dreading the visit from Aunt Flo. If she appeared on the morning of my surgery it would have to be postponed. Thankfully she didn’t appear until after surgery 🙂

Dermoid cyst removal and Fallopian tube dye test (hysterosalpingogram) surgery

It was a grim Wednesday morning in March 2014, I checked into the hospital in early morning wishing for it to be lunchtime. It wasn’t too bad to go without food because I had slept before hand so just didn’t really notice. However, 4 pm seemed to take forever and day to come around and my stomach was starting to grow. The pain was starting to creep back and sitting there wondering what to do. I popped down to the nurses station and asked if it is OK to take some pain relief. I had been sat in the waiting room with my husband and some music for several hours by now. He was clearly bored and had no idea what to do with himself. When my time came I had to say goodbye to my anxious hubby and get changed into a pair of gorgeous paper pants and butt exposing gown oh and don’t forget the hospital socks. I had read up previously to take a dressing gown with me and so glad I did because you then have to sit in a unisex waiting room with other people dressed in these fashion statement pieces.

It was a horrid wait, bizarre thoughts started going through my mind. Finally my name was then called and I walked with a nurse to the operating theatre.  Once again I was told what was going to happen (the theatre prep and then recovery – they don’t tell you the exact details of your surgery).  When I was in the prep room I was laid on a theatre bed surrounded by gizmos and gadgets. The first of my jabs occurred now – the cannula. This will be your friend (and enemy) for the next few hours. You are giving anti-sickness drugs and then the general anesthetic. I had never had one before, didn’t know what to expect and was freaking out. When I got mine it was in the left hand. It started of feeling like my hand was starting to tingle / burn it was a weird feeling, this then travelled up my arm and I was wondering shit is this normal oh no I don’t know, OMG what the….

…The next thing I recall was speaking to a nurse in the recovery ward. Yep, you try to fight something but before you know it you’re out for the count, had surgery and waking up. The nurse was talking away to me and I had no idea where the hell I was or what she was saying. They are asking you how much pain you are in from a scale of 1 to 10, 10 been the worse. I was then aware that there was an oxygen mask on my face and my throat was so incredibly dry. Dry like you’d been out on the drink all night and someone poured sand down your throat.

I was moved into the recovery ward and left alone with my thoughts. I was wondering how my stomach looked from the surgery and whether my husband knew I was out, oh and wondering what time it was. The nurse came round and asked if I was OK and if I would like something to drink and eat. Never opt for a sandwich – my god it was excruciating to eat. It’s like swallowing pine needless. Bread and dry achy throats do not go. You need to eat and drink (and keep it down) plus go to the loo before you can be discharged.

The first toilet trip (sorry this is a bit graphic but it might help you ladies who have never had this experience). Well it’s the first time you can lift your gown and have a look at your stomach. You’re expecting bandages galore and all you’ve got is three white dressing pads. One on your belly button where the gas was inserted to inflate your tummy. Another one / two (depending on your surgery). when you remove the dressing in a couple of days you discover tiny cuts held together with two or three stitches. A lot of fuss for a little mark. Oh yeah the toilet forgot this bit. Well after you’ve checked yourself out in the mirror you go for your first pee. Shit it’s a horror movie down there, like the first day of a heavy period. ITS NORMAL. Please remember to take your own sanitary towels – don’t do what I did and have to ask for a hospital issue one. Oh my lord those things are hideous, it’s like sticking a nappy in your knickers, there huge and bulky. I wasn’t told that you bled so much afterwards so it didn’t occur to me that I needed sanitary towels in my bag.

Once I’d done this I found myself acting like a child who’s just potty trained for the first time “I’ve been to the loo” I found myself saying to the nurse (oh lordy what she must have thought). You feel such a tit saying it but you can’t help it it’s like verbal diarrhea and you feel proud you went to the toilet the first time after surgery.

Discharged and on my way home.

So I had been to the toilet had something to eat and begging the nurse to remove the evil cannula. Your hand probably hurts more than your stomach right now and all you want is to go home and sit in front of the TV. My hubby was sat impatiently waiting to see me in the waiting room – thankfully the nurse had rang him when I got out of surgery.

The nurse took me and the hubby into a side room. We were told the first 24 hours where really important. No excessive movement and that includes making a cup of tea. I was told to keep on top of the pain medication for at least the first 4 days. Remembering to take before the onset of pain. If the pain arrives its harder to shake. Unfortunately, the issued pain relief isn’t great – paracetamol and if you’re lucky some ibuprofen and codeine.

Driving home, I couldn’t see what all the fuss was about, I felt great but it was all just an illusion which I  came to release within the next 24 hours. We stopped for a Chinese takeaway on the way home. I was starving and wanted something with flavour that wasn’t go to rip my throat apart. The first mouthful was like a little slice of heaven. I was sat on my sofa with a takeaway, hubby and crappy midweek evening TV. 11 pm came around and I was ready for bed.  Laid in bed, eyes wide open listening to hubby snoring away. Why can’t I sleep? 8am phone alarm sounds – time to take some meds. Oh shit I left them downstairs. OMG what is this horrible feeling in my stomach? – why does my hand hurt? POW, the anesthetic has fully worn off and the realization I had surgery the day before has sunk in. I now feel very aware of the tightness in my stomach and that my eyes are desperate to close.

The recovery period is very very different for each and every person having surgery. Our pain thresholds are different and for some the recovery can be days and others weeks. I was off work for a little under 6 weeks. I was desperately bored and sick of sudoku puzzle books. UK Day time TV is horrendous and there’s only so many movies you can watch in a day.

During your recovery you learn how to get up and down the stairs differently. It takes a little longer but one step at a time seems to help with the pain. Showers are better than baths when it comes to keeping clean and fresh. Supermarket stick on dressing pads are cheaper than boots. There’s no such thing as black stitches it’s just blood and once you are able to clean the area properly you’ll see that. Oh and what’s the most vital thing you learn whilst recovering? That stitches are not your friend. After a couple of weeks you’re sat looking at these things wondering when they will dissolve.  They are starting to feel really uncomfortable and you will start considering removing them yourself. You also realise that your belly button piercing is a curse. It irritates your scar and after a while of not wearing it you just having a crazy little hole at the top of you belly button.

On the plus side that hideous dermoid cyst was partially removed. Unfortunately for me they could remove it entirely due to the position it was in on my ovary. So they drained it and lasered it so it couldn’t reform. If they attempted to remove it they could have damaged my ovary and that would have had to have been removed. The tube dye test was all clear no blockages. Hopefully this will be the start of my PCOS symptoms dying back a little and maybe just maybe we might be able to conceive.

January 2015 I was in agony again and still no sign of a baby that we had been trying for since 2012. My consultant booked me in for surgery number two. This time I was going to have Laparoscopic Ovarian drilling (LOD) and then take Clomifene (Clomid).

Fertility treatment surgery number two: Laparoscopic Ovarian Drilling (LOD)

Nearly a year to the date of the first round of surgery I was back in the theatre waiting room. There where some differences to this surgery from last year. Firstly, I was at a different hospital, secondly, I had a morning appointment and not afternoon. The waiting room at Darlington is smaller and feels a little impersonal. Hubby wasn’t allowed to wait with me so had to go home leaving me by myself. To my surprise I was called first and taken straight to the ward. The nurse handed me a clear box along with surgery stockings and a fabulous gown and paper pants. Like last time, I got changed and put place my items in the clear box instead of a locker.

This time I put my mobile into my dressing gown pocket. Unlike last time I wasn’t prepared to sit in the waiting room bored. I didn’t get chance to text I was called down to the surgery prep area. I was left alone, with another two ladies in this area with nurses and I’m sat on a bench alone. Three times I was asked if I had seen someone and three times I said yes the nurse said she’d be coming back. 20 minutes had passed, the two ladies I came down with had disappeared and I was starting to feel like I was forgotten or not doing something right. My nerves started to take over and I was scared. Thankfully, a nurse appeared smiling with a hair net for me. We went into the prep room and I once again laid on a theatre bed. The process was a little different from the first time. The cannula didn’t seem to want to go into my hand properly so it went in the side nearer my thumb on my right hand. That hurt!

Next thing I know I’m on a ward with a nurse talking to me. I was coughing away because I couldn’t seem to catch my breath properly with the face mask on. My throat was dry once again and the lights above my head where so bright. I really didn’t feel with it this time around. I was laid on the bed in the ward drifting in and out of sleep. I vaguely recall my consultant speaking to me and several nurses appearing. I have no idea how long I had been laid there.

A lady was brought into the ward and I remember she was last on the list for surgery at 4 pm. Gosh it must be at least 6 pm by now, I’ve been here for at least 6 hours. I can hear the nurses in the corridor talking about me and saying that there isn’t room on the ward and that room would have to be made. Shit, I’m not staying in hospital overnight! I mustered up what little strength I had and begged for something to eat and drink. I wanted to go home I didn’t care if I had to lie to myself I’m not staying overnight. I got helped from the bed to allow myself to go to toilet and get changed. I was alone for what felt like an hour. About 8:30 pm I was with the discharge nurse who told me the tablets I was prescribed by my consultant were not available from the hospital because the pharmacy was closed. So handed a prescription to get at my local pharmacy the next day. The prescription was for Metformin and Clomid. I was also told that my consultant had formally diagnosed me with PCOS and wanted me to be reminded before I went home because he wasn’t sure I had heard him during his visit earlier in the afternoon.

I was at home recovering for a very long time. It was June by the time I got back to work. It wasn’t so much the pain but the mental drain from the surgery. I should point out that I don’t have a desk job. I travel a lot and work strange hours and that’s why I was signed off a lot longer. Thankfully, I had friends who came to visit and take me out for the day even if it was only to the shops. Not been able to drive for 8 weeks was torture – worse than daytime TV.  I actually subscribed to Amazon prime just to be able to watch movies and box sets that I wanted.

The surgery was a success at least. My cycles had returned to a normal 31 days instead of between 77 and 345 days. The Clomid was helping me ovulate. Once you start taking Clomid the first three cycles you need to have blood tests taken to check your hormone levels.

6 months later in November 2015 my body just stopped working again. Some women ovarian drilling can last a little over a year but for the majority like me not very long. You are told at the beginning that it is only a temporary fix but you are just so relieved when it works you forget all that.

February 2016 I was back with my consultant again after booking the date in December. (I just wanted Christmas and new year out the way). I was told by my consultant that because After 6 cycles I still haven’t conceived I probably wouldn’t be able to conceive naturally and definitely not without medical intervention. I was absolutely crushed and felt useless as a woman. I couldn’t give the man I love children and this really screwed with me for months afterwards. Fortunately we both qualified for the IVF wait list so my consultant wrote off to start the beginning of our IVF journey.

Summary

Admitting having PCOS and it been the reason for my infertility to myself is OK but telling others I have it is embarrassing. I don’t know why but I can’t bring myself to tell people that this is what I have. By people I mean family and close friends. It’s hard because I feel like a total failure as a woman. Not been able to conceive naturally – heck I would have been sectioned in some asylum if I had lived only a 100 years ago. This syndrome sits on my personal medical shelf along with endometriosis, migraines, infertility and now depression. Shit, I’m a walking time bomb and if you shake me I’d probably rattle from the medication I have to take. Obviously I have come to terms with PCOS but it is still a bit of a taboo and that is because people don’t know what it is despite been very common.

I hope you enjoyed reading and if you want to continue reading my story head over to the article IVF: Our journey

Katherine xo

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