PCOS & Me
In recent months I have been reading a lot of blogs by women with PCOS. For those who are not familiar with PCOS it stands for Polycystic Ovary Syndrome. And it’s a bitch.
I wanted to write about my experiences with PCOS, as most of what I read have been success stories and people praising miracle drugs, such as Metformin. I would love to hear from anyone with similar experiences to mine, recommendations, or any comments on this topic at all, really.
I hope my story helps anyone who is in a similar position, even though I have not yet found my ‘miracle cure’, just knowing there are other people out there going through the same thing makes a difference. No one can understand what you have been through/are going through like a fellow cyster.
The Beginning
From the time they started, I never had any problems with my period. Was regular, short and painless. It wasn’t until approx end of 2002 that I began experiencing random sharp abdominal pains. It started as maybe 1 pain/week and rapidly turned to multiple pains/day.
As the pains gradually worsened and became more regular (I was having pains once an hour, and they would last for 15 minutes. This included throughout the night, so bye bye sleep!) they started impacting on my day to day activities, so I decided to seek medical advice. Strangely enough, the only time I didn’t get pain was during my period – go figure!
There is no easy way to describe the pain I was getting. It was not like normal period pain, but a sharper, deeper pain. I have never been stabbed in the abdomen, but I can imagine it would feel almost exactly like this; a double you over, break out in cold sweat, make you want to vomit kind of pain (and try explaining that to a 60-yr old male gynaecologist!). It regularly reduced me to tears, curled up in a ball on the bed or floor. A few times I almost asked someone to drive me to the hospital as I really thought I was going to die.
The Adventures Begin
Gynaecologist #1:
So around the start of 2003 I started my medical adventures. I went to my GP who referred me to a gynaecologist. He sent me for ultrasounds (by the way, did you know if you don’t drink enough water/aren’t told to drink water before an ultrasound they do an internal one….yep, that’s right an INTERNAL one. That was a lovely surprise on my first visit!) and did his examinations etc and said he thought it was endometriosis. He recommended I have a laparoscopy and D & C (dilatation & curettage – scraping the inside of the uterine cavity). So I was booked in for surgery.
After the surgery, his diagnosis was (very briefly) endometriosis along with uterine fibroids. He said I have one extremely large fibroid on the wall of my uterus and if I ever tried to have a natural birth it would probably collapse, so I would have to have a caesarean if I wanted children. He then proceeded to tell me he felt my only real option was hysterectomy (bear in mind I was about 20 at the time). Luckily for me (as I would have probably gone along with his recommendation, being a ‘professional‘ and all), my mother is a nurse and I had taken her along to all my appointments, and she suggested I should probably see another specialist (good on ya mum!).
Obstetrician
So off I went again, this time to an obstetrician in Sydney. Funnily enough, I actually saw the same obstetrician who delivered me when I was born! Again, I had more ultrasounds and examinations. So, I went and had a glucose tolerance test (yuck!). For those who haven’t had the pleasure of one of these babies, you drink this gross glucose solution, then sit at the pathologists for two hours whilst they intermittently take blood samples (during this particularly lovely visit they managed to shut down the veins in both arms and had to go to my hands for more). He concluded I did indeed have cysts on my ovaries (as well as fibroids), and we could probably get away with just removing one ovary. Well, better than the whole lot! Oh, and he recommended if I ever wanted to have children that I should start planning it now, as I probably wouldn’t be able to in the future. But still, good old mum was like “Maybe we should see another specialist”.
Gynaecologist #2:
So again, another referral, another specialist. This time a gynaecologist in Tamworth. He was extremely positive, and one of the first things he said was “Do not let anybody operate on you! We will start with the simplest treatment and work our way up.” I had yet again more ultrasounds (was becoming quite pro at this, by this stage). This time, the diagnosis was that I had PCOS, along with uterine fibroids. He explained I had an extremely high insulin resistance and elevated testosterone levels as well. By the way, the pains were still going at this stage (oh and somewhere in there I had been prescribed Voltaren and a strong pain med I can’t remember the name of, to take 3 times a day with food). So the gynaecologist suggested we start out with a simple bcp (birth control pill) which, in theory, should stop me ovulating and therefore stop the pain associated with the cysts (as the cysts form when eggs are released and don’t mature properly etc etc – too complicated to explain here). I was started on Trifeme which eliminated SOME of the pains, but I still got pains a few times a day.
Endocrinologist:
After about a year of this, I decided I should probably try to FIX the problem rather than simply mask it. So I went to an endocrinologist in Sydney, by the name of Dr Warren Kidson. I’m sure any cysters reading this will recognise the name. He is supposed to be the god of PCOS and it’s diagnosis/treatment/cure. Well, let me tell you, he isn’t.
From the moment I set foot in the door, it was all about losing weight. Now, losing weight is harder…..losing weight when you have PCOS is damn near impossible, and extremely disheartening. First he weighed me (and tisk’d at the figure). He immediately took me off the bcp. I showed him my ultrasounds and glucose tolerance test results. He then started sprouting the wonders of this new drug called Metformin, a revolutionary drug which treats PCOS by improving insulin resistance etc etc (I later read Metformin is mainly useful for women wanting to have children, but I think it‘s also the same as what diabetics take). So he started me on a low dosage of that 3 times a day with food.
From probably 2 weeks I began to feel nauseas. This got worse and worse until I physically had to stop myself throwing up after taking the pills. This continued to get worse until if I even thought about taking a pill, I started to feel I was going to be sick. However, I stuck with it. I saw him again and explained it to him. He simply said “Well, you mustn’t be taking it correctly then” and increased my dosage. I continued with it even going to the lengths of crushing up each dose and mixing it in a tub of yoghurt, without success. I saw him again, explained I was having the same problem (had been on it for about a year) and same answer; “You mustn’t be taking it with food. Take it properly and it will work.”. Also, I had still not been able to lose any weight, even after seeing a nutritionist regularly and exercising and the Metformin. This, again, according to Dr Kidson, was my fault. Eventually, completely disheartened and sick of being blamed for the medication not working, I stopped going back to see Dr Kidson and stopped the Metformin.
Out of options:
By this time I felt completely out of options, the miracle drug hadn’t worked, I was in extreme pain most of the time, overweight, couldn’t do everyday activities, including work, without a heat pack to take the edge of the pains (no pain meds would work).
Then, about 2 years ago I decided to just go back on a bcp, as this was the only thing which stopped the pain, and seeming as nothing else worked, eliminating the pain was/is my main priority.
Now:
So I am now on the pill again, have been for the last few years. I simply skip the sugar pills so I don’t ever have my period. This seems to have stopped most of the pain. Have gained more weight (substantially more), however pain is mostly gone (apart from the odd one here or there). I eat healthily, exercise regularly (have joined a gym and having PT sessions), yet cannot lose any weight. I am probably just masking the problem by taking the bcp’s, but I just cannot bring myself to start the whole saga to find a treatment that will work again, and I cannot face any more doctors/specialists who have no experience with PCOS, no sympathy and just blame me for it, whilst I pay them ridiculous amounts of money. I am also sick of my fertility and child-bearing potential being the number one concern for specialists.
So for now I am simply satisfied with staying on the pill and having no pain, depressed at the constant struggle with my weight, and worrying about the long term effects this damned condition is going to have on me.
Tagged as Cysters, Cysts, Dr Warren Kidson, Endocrinologist, Fibroids, Gynaecologist, Metformin, Obesity, Obstetrician, Pain, PCOS + Categorized as Me, myself and I
Kate your story is all too familar. A ruptured ovarian cyst with a laparotmomy at 2am at 19 welcomed in my PCOS although not formally diagnosed til my mid 30s! I was asymptomatic as far as I was concerned til that night. Then after the first came the second, then the 3rd, 4th etc you get the picture so off to the gynae I go. I cant help but laugha t your ultrasound experience…its oh so true! NOthing prepares you for that surprise! SO off to the gynae and to add insult to injury I worked with him! His advice – Well the only cure is to take out your oviaries – a suggestion all 19 year olds want to hear! Not that I was ever really planning children I was aware of the other reasons for them and early menopause and heert disease wasnt on my to do list at 19. Being the nurse I thought thats a little drastic and asked for other options…the only other opition was the BCP. So off I started. The weight increased, the cycts returned but never large enough for surgical drainage – “theyll burst on their own”. I really hope that one day these male gynaes have something 5cm burst inside them! Not fun! Apart from that how do you explain a burst to your family and friends who dont really want to know what your reproductive organs are doing let alone you have them in the first place! And its somehting that cant be seen so there is always that silent your faking look!
I keep taking the pill. All the gynaes kept saying the same thing… ovary removal or the pill. But the pill didnt manage my other symptoms. They were all concerned with my fertility and the push to have kids whilst I can! It actually turns out that I produce too many eggs each cycle making me a big risk candidate for multiple births!
Oh and the weight pilled on. Never little to begin but now I was plus sized! The cysts kept coming and bursting and my life continued with these little explosions almost once a month.
I did alot of my own research and tried different diet – the syndrome X diet to name one. All with little effect. I research medication. I suggested different BCP to different doctors and suggested depopovera only to be told thats for the 3rd world or women over 40 who dont want to get pregnant! It was frustrating and disheartening.
I was “lucky” to fall very ill at 32 and as a result my weight ballooned. I was sent to the metabolic clilnic at RPA in Sydney under the direction of Prof Ian Catterson who is an obesity expert cause I was now obese. My first appointment he said to me so how long have you had PCOS! I looked at him and said I dont – just a few cysts. Everytime I have suggested POCS or Syndrome X or metabolic disorder to a doctor I was just ignored. Damn nurses think you know so much syndrome!
So he finally formally assessed me…and there it was POCS. Now I had an explaination for the carb cravings, the weight gain, the fight not flight relfex (love my tostesterone), hypertension, the extra hair in places girls just are not suppose to have – just to name a few of the optional extras POCS gives a girl. I started on Metformin and tolerated it very well and the God send Depopovera! Once every 3 months a shot in the arm and no more cyst – or periods for that matter. The pain went, my weight started to drop, I could walk passed Maccas without wanting everything of the menu to go!
The only hassel is explaining POCS and insulin resistance to everyone including the medical specialist. They just dont understand and try to treat you as a diabetic because I take a diabetic medication!
So 10 years on I am symptom free – I have had one cyst 2 years ago. I exercise when my other medical conditions allow and I accept that I will never be a size 8 but I can be a healthy plus size.
I am one of the few women who will be welcoming menopause! At nearly 43 I have chosen not to have kids, but do you think I can get anyone to take out my oviaries now! Its the ultimate paradox!
I consider myself one of the lucky ones, – at least know to watch for heart disease and diabetes – and just why the chocolate cravingf is a life threatening thing – dont get in between my chocolate and me or die! So many girls and women suffer POCS and are too scared to have it investigated (including my best friend) or their symptoms are just dismissed. The secret is for us girls to educate each other.
Thanks for raising the issue.
I am happy to answer questions.
Marel
I never knew you had PCOS…..I have insulin resistance, but I think I am on my way to getting PCOS – that’s if I don’t already have it. I have 1 Diabex (metformin) a day to try and manage the insulin resistance. Seems like no matter how hard I try I just keep putting on more and more weight though.
I have known a lot of people that have PCOS and just recently my little sister has been diagnosed with it too. I seen an Endocrinologist named Soji Swaraj in Campbelltown a few years ago, but I personally didn’t get much out of him and never went back to see him (maybe it was just me, not sure).
Kate darling got your link from the Y answer you sent me.
I started my periods very early at age 11 or 12 and from the time to now it has never been ‘regular’. i have seen specialist in England (when I was there) and now back home in Africa I have seen other specialist and on Gynaecologist did put me on Metformin for years but like you I have never lost any weight with it.
Eventually this year I relocated to another country in Africa and had to change doctors (obviously) and my new GP told me to forget exercising to loose weight as it would not work and as for taking care of the PCOS it really has to do with treating the symptoms. Like you have don’t you are on the pill.
Well I don’t want to go on the pill and what he did was put me on DUPHASTON 10mg to be taken from day 16 to 25 of my cycle (twice daily).
So I had about 8 weeks wait for my period to come and then I have eventually started this medication; and for the first time in about 17years of menstruation this is the first time I have had a period cycle of less than 28days ( I have gone 9 months without a period mind you). I have calculated the days and am waiting for day 16 to take my second dose.
I have researched the medication and realised that it has to be a repeated treatment and the Dr has put me on a 6 dose treatment.
I don’t know about you but apart from the weight I have been diagnose with hypertension and am on medication for that, the acne is not only on my face but my whole skin is dry no matter how much fluid intake I have. My eyesight is not too good.
Like you, I am always researching about PCOS and what I can do to help me, and I marvel at the success stories and wonder how they did it, and that led me to post my question on Y answers and I am so grateful for your honesty about your journey with it and I feel so much better knowing that I am not the alone.
Thanks for sharing!
Hi Kate, I know your sister Jessica, she sent me this for me toread as I have PCOS aswell…. Your story is horrendous =( I am on the verge of tears for you. Yes PCOS SUCKS ASS!!!! Unlike you I want to have children, I am seeing an onstetrician in Tamworth, Dr Hollebone, he tells me I can have as many children as I like…..my husband and I are going to him for help, to help us have a baby, we have only been seeing him for roughly 6 months and each time I leave on the verge of tears.He makes it harder, first visit he told me to go home take metformin, 1 a day for 2 weeks, then 2 a day for 2 weeks, then 3 a day every week after that, if it gets to much go back to 2. I was sent home to try and fall pregnant on my own….. GAAAAHHHHH, if I could fall pregnant on my own, does he honestly think I would be paying him $70 for 2 minutes worth of shit…….=( ANYWAY 3 a day was leaving me nauseas and giving me really bad diarrhoea….even a glass of water would run right through me. So I went back to 2 for a few weeks, still didnt get better, then down to 1 and it was better but still not 100%. We went back to him and I told him what was going on with the medication and he told me I needed to be on 2 a day for a month while taking my body temperature, but if 2 a day makes me sick then go to 1 a day….HUH? did I not just say that to him….????? its so emotionally draining going to him….but I am scared of starting again with a different Obstetrician and it will therefore take longer to have a baby. I fell pregnant once in 2008, but miscarried. The only reason why I am doing something about it now is because I dont want to be 30 and get told no I should have tried to do something about it when I was in my early 20′s. Plus I dont think he is taking me seriously and if I have to hear one more time that I am only young and I have plenty of time I am going to scream…….I HAVE A FERTILITY PROBLEM…..DOES THAT NOT MAKE MY WANTING A FAMILY NOW A SERIOUS PRIORITY…..=’(…….obviously not….asshole male doctors dont have to put up with feeling like your not a woman because you cant make a baby without stupid male help! I too am over weight roughly 89-90 kilos but I dont look that big……about 80ish kilo’s…..most of my weight seems to sit around my waist and I have a tyre, which doesnt help the fertility. But it really is so hard to lose weight with PCOS and it does becomedisheartening, like why should I even try when I can bust my ass and lose nothing…..I know this is more a story than a comment…..but I can sympathise with you here in some parts and not every PCOS journey turns out the way you want it and it wont always be successful,and I am petrified I cant have children……wish you well and thankyou for sharing your story……=D
Thanks for sharing your story Kate. Would you consider letting us post it on Cysters United?
For any ladies with PCOS who want to hear from (and even post to) a blog about PCOS by women who have PCOS, come on over to Cysters United (the link is in my username).
Kath
Hi Kath,
Sure I would be more than happy for you to use this on your site. I’ve read some of the blogs on there already and would love to be part of it.
That is crazy! I live in the United States and I am experiencing almost the same thing! It is very hard to lose weight and all doctors act like it is my fault. All doctors care about is my fertility. I feel like if I have kids and decide I don’t want anymore then maybe they will help me. The doctors act like I need to have children. I am considering weight loss surgery however, I am not fat enough for it. I don’t know what to do. I don’t want to accept being fat. It is crazy how all across the world the doctors are the same!