A Story About PCOS & Infertility

Today we are talking to a woman who has Polycystic Ovary Syndrome (PCOS). For anyone who doesn’t know what PCOS is according to Webmd.com it “is a problem in which a woman’s hormones are out of balance. It can cause problems with your periods and make it difficult to get pregnant. PCOS also may cause unwanted changes in the way you look. If it isn’t treated, over time it can lead to serious health problems such as diabetes and heart disease.”

Keelie has a blog centered around her PCOS, fertility, and motherhood journey, go check her out! I love her positive outlook on something that could be absolutely devastating. She also has an Instagram that I love following (@keelie90) and a Twitter account (@keelie_meakin)

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My name is Keelie. I was born in Nottingham, UK (Robin Hood country) and lived there until I was 19. I’d moved around the south a couple of times before I met my husband and moved to Surrey, UK (just south of London). We celebrated our 1st wedding anniversary this year. We have a little boy called Logan and a rescue cat called Mimi. I started my blog Keeliesfertilityjourney after discovering just how little personal exposure of PCOS there was, especially here in the UK.

Can you give me a brief description of PCOS?
PCOS or Polycystic Ovarian Syndrome is a set of symptoms that occur in some women due to a hormonal imbalance of the male hormones called Androgens.

When were you diagnosed with PCOS and how old were you?
I was diagnosed back in June 2013, after coming off the contraceptive pill to start trying to conceive. I didn’t have any periods. I was 23 years old. I lived in Bournemouth, on the south coast at this point. I had just gone through a breakup with my previous partner when I received my results from the hospital.

What was your reaction to your diagnosis
Honestly? I cried. And then I googled. Literally, the worst thing I could have done, never google symptoms! The hospital gave me some paperwork to read over but it’s so limited in its knowledge that I needed to do my own research

What did you do about your diagnosis?
Researched the hell out of it! I’m pretty sure I could tell the doctors a thing or two about PCOS these days! I spent hours and hours looking at symptoms, exercise routines, potential ‘cures’, diet books, supplement lists. I would come home after my night shift and sit in bed writing out lists of supplements that could help a certain symptom, or search the internet for anyone with a similar story to mine. I spent forever looking for someone telling their story who had a positive outcome, someone whose symptoms mirrored mine. But the female body is an odd one, in all the time I spent looking, not one person had the exact same as me

What kind of symptoms have you experienced
Infrequent/Absent periods – They went from bang on every month for around 6 months, to nothing. They just stopped.

Hirsutism – Such a technical word but what it actually means is increased hair growth in a kind of male pattern. I have chin, neck and nipple hair. I find the hairs growing on my chin and neck similar to that of a man’s beard, whisker-like hairs. I pluck them out, no shaver burn for me!

Cysts on ovaries – I have them on both of mine and there are quite a few of them. A doctor I spoke who said that even fully fertile ladies can have cysts on their ovaries so measuring their size and frequency to determine fertility just wouldn’t be an accurate enough measure

Acne, oily skin – Stress and fatty foods play a major part in my acne.

Weight gain – I’m not too sure about the weight gain. Since coming off the pill my weight has fluctuated but whether that is down to my PCOS I couldn’t say. I’m currently on the Slimming World diet but I could do with exercising more so I need to give myself a good kick in the backside haha!

Skin tags – Not really sure how they come about or what they actually are. Other than being little flappy bits of skin. I’m pretty sure they’re harmless though!

How does your spouse feel or react to your PCOS diagnosis? (Depending on when you were diagnosed)
My husband wasn’t around at the time of my diagnosis, but I do have to sing his praises here. I explained to him in as much detail as I could about my PCOS and he has been so so supportive of me. He’s been by my side, not judging me or my symptoms, helping me through the bad days when I feel like less of a woman. Even to this day, he still claims that not once has he noticed any of my facial hair. I know he’s lying, but its sweet so I let him off haha!

What do you do specifically to treat PCOS?
Right now, I’m slowly working on my diet and exercise after having a baby. I was breastfeeding for the first 3 months and had had a caesarian section so everything I’ve been doing has been for the benefit of Logan, regardless of my symptoms. I cut out all supplements and try to get everything I need from food. Apart from caffeine, mummy needs caffeine haha!

I will be going back to the Slimming World diet, it’s amazing how well its worked in the past for helping keep my symptoms under control. It promotes healthier choices without having to completely cut certain things out. I’m a big lover of sweets and chocolate!

I’m also back on the contraceptive pill. Although it’s incredibly unlikely that I’ll ovulate naturally, I just don’t want to risk falling pregnant so soon after having Logan. In a strange way, it makes me feel more of a woman, more ‘normal’, probably because I have a period each month and it masks my symptoms. It can be a bad thing to take the pill as you won’t know just how your symptoms are being managed but mine don’t mask anymore, maybe because I’m older or maybe because I have a different pill compared to when I was first diagnosed.

Have you tried other things that didn’t work?
I took an absolute cocktail of supplements. I’d been given a book called ‘PCOS Diet’ that listed pages and pages of supplements that could help ease certain symptoms. Here is a list of all the supplements I was taking and why:

Agnus Castus – 2 tablets per day – Acne, infertility, absent periods or irregularity, hormone imbalance

Aloe Vera – 5ml into water per day – Acne and insulin resistance

Multi-Vitamin – 1 tablet per day – Acne, excess hair, hair loss, hormone imbalance, infertility, irregular or absent periods, insulin resistance, irritability, mood swings,

Garcinia Cambogia – 1 tablet per day – insulin resistance and weight loss

Milk Thistle – 2 tablets per day – Acne and irritability

Red Raspberry Leaf – 2 tablets per day – Acne, infertility, irregular and absent periods

Saw Palmetto – 2 tablets per day – Acne and excess hair

Maybe it was the cocktail of supplements I was taking or the amount. But nothing changed. If anything, it made things worse. I felt sick and dizzy. Just generally not well.

The Agnus Castus was incredibly potent, the smell was so strong it had a catnip-like effect on my cat!! (I never let her take it, she managed to smell the packet).

I’d like to say to anyone reading this, this was an incredibly silly thing for me to do. I had absolutely no idea what I was doing and didn’t consult any medical professional before taking these. I could have seriously damaged myself! Please please don’t do what I did!

How do you feel now about your diagnosis compared to when you first learned?
A lot better! Especially after having my son. I’ve learned a lot about myself along this little journey of mine. I’ve always thought of myself as having poor willpower,(and in the case of wine and chocolate, it’s still true haha!) but going through everything I have and achieving my goal of having a baby proves just what ill do when I know the worth.

I’ve learned that our NHS works so hard to help people once you’re through the hospital doors, but I know that getting there is the issue and is something that really needs fixing. GP surgeries need a kick to actually refer you for further investigation/treatment.

I’ve learned from my mistakes of what will and won’t work for me. It sounds so cliché, but I’ve found my inner strength.

I’m also so aware that although my struggle with PCOS and my fertility was for me difficult to take and a horrid time, its nothing compared to some couples/ladies who need much more treatment than I do. I have PCOS, but I know I’m lucky!

Can you explain your fertility issues to me?
My PCOS causes symptoms that affect my fertility. My periods are infrequent/absent. I’ll say both purely because I started taking the contraceptive pill back when I was 17 and didn’t stop until I was 23 so I can’t actually remember what they were like before I started taking the pill. When I came back off the pill to try for a baby with my husband I had 6 periods that were perfectly timed before they stopped.

I also have cysts on both of my ovaries that were confirmed by several ultrasound scans which essentially stopped me from ovulating and having periods. My doctor described them as a string of pearls, such a lovely way of looking at it!

Having PCOS means that conceiving could be a lot harder for me and that I would probably need help from a fertility specialist and medicine.

How did you deal mentally?
It was incredibly tough, I won’t lie. My diet had to change, my fitness had to change. I was in and out of the doctors and hospital so much, I may as well have moved in! I needed to find a way of venting, of getting out all my frustrations, my stress, my anxiety. I worried I’d never become a mother, that everything I was putting my husband through would be for nothing, that everything I was putting myself through would be for nothing.

I managed to cope with all of this not only from the constant communication with my husband and family members but also with going to the gym and yoga sessions. I always did yoga at home, I found my own space and being alone far more relaxing.

What steps did you take to try and have a baby?
Firstly, we were physically trying for a baby the natural way, I had come off the pill and was having periods so we just hoped that I would catch. We were trying, but at this point, we weren’t really trying, more not trying to not get pregnant. If that makes sense. Nothing happened after a few months, so with my diagnosis of PCOS already in my doctor’s notes I went for a consultation with my GP

How did this affect yours and your spouse’s relationship?
It was really tough on us. More him than me, if I’ completely honest. Without meaning to, I’d let it consume me. Desperate to have a baby with the man I loved, but somehow completely forgetting about his feelings. About us.

I worked hard to fix this and get us on the same path. I think, for me, it was so difficult to not be consumed by this when for the most part, it was me that it was happening to. While it was the couple trying to have a baby, it was me needing the treatment to be able to conceive and have the baby. Maybe I became selfish in my efforts to ‘fix myself’, and could have destroyed our relationship in the process.

I learned along this little journey of ours, that talking is key, but so is constant work on your relationship. Through the good and the bad.

Did you take any further action on your fertility? And if so, what was it?
I was referred to a fertility specialist by my GP, from that point I had appointments every 3 months. I had ultrasounds to check my ovaries and womb, although my ovaries were covered in cysts, thankfully my womb was absolutely fine. I also needed to have my fallopian tubes checked, to make sure there weren’t any blockages that would stop the eggs making it through. This test is called Hysterosalpingography.  It required me to basically strip to my bra and socks, no knickers and wear a very unflattering hospital gown. Luckily they gave me 2, purely so I didn’t flash the entire hospital my floof! (Although by the time I’ve had my son, I don’t actually care who’s seen it haha!). For the test they insert a thin catheter through the cervix and into the womb, from there they insert a dye and x-ray the fallopian tubes for any obstructions. This is the only time I felt scared. I got myself so nervous and worked up, I threw up!

I had to take a week’s course of Norethisterone, this is used mainly for stopping periods but can also be used to start them, I’m still not entirely sure how that works but it worked for me. I then took a 3-day course of Chlomed, a pill to make me ovulate, my doctor described it as ‘making your ovaries fire out eggs like bullets’ haha! We were incredibly lucky, we caught in the first round.

How long did you try before you took further action?
We didn’t try for as long as the GP will tell you to. The standard in the UK is 1 year. I believe we tried for a few months before I went to the GP to discuss what could be done. They had my doctors notes which had my PCOS diagnosis in. I was advised in my consultation with my GP that when he referred me to the hospital after that appointment, I would need to lie to the hospital and tell them we’d been trying for a year with no success. He told me that as we were both mid-twenties and in good health that the hospital would tell us to come back after a year. We knew I needed help from the fertility specialist by this point, although I’d have some periods, nothing was happening.

It was a good thing I went to the doctors when I did, my periods eventually stopped and I wasn’t ovulating, so it was clear to everyone that I needed medical help to conceive.

When did you have your son? How old is he now?
Logan was born on the 15th April this year, he’s now 6 months old. He was 10 days late and I was in labor with him for 36 hours, he was born by emergency C-section (he came out the sun-roof), after 1 hour and half of pushing, 2 failed forceps attempts and 1 failed venturous attempt… so I’m expecting an amazing Mother’s Day present next year haha!

What would you say to anyone who is going through PCOS?
I would say, that I’ll be honest and will never sugar-coat it. It’s hard and it’s lonely. Although I had support from family and especially my husband, I felt alone. I didn’t have anyone I could talk to who also had PCOS, someone who could truly understand what I was going through. Not just with the fertility treatment, but with the day to day dealings with managing my symptoms.

I cannot stress enough just how valuable that would be. Keep talking, keep being open and honest. Talk, talk, talk. Go back to the doctors for help with managing symptoms, and never feel forced to go on contraception. There are other ways.

I would also say; chances are the first thing you’ll read about PCOS is that you’re infertile. For the majority of women, this just isn’t true. It’s so hard not to, but you can’t focus on this, you’ve got to fight those symptoms and get yourself into a healthy position both mentally and physically. It’s hard but so worth it.

All this being said, it does get easier, it does get more manageable, and you will fight this!

What would you say to anyone who is going through similar fertility issues?
I would be completely honest and say its tough, it won’t ever be easy, but it’s so worth it in the end. The physical symptoms of PCOS aren’t nice, they can take away your femininity and just make you feel like poop. The best thing you can do is arm yourself with knowledge, research it all until you know more than the doctors do (or at least close!). Find ways to combat your symptoms in a way that makes you comfortable. For example, I have peach fuzz on my face and whisker hairs on my chin, so I pluck the whiskers and use a facial trimmer for the fuzz.

The term ‘miracle baby’ is used a lot these days, and maybe everyone has a different reason for using it, but your baby will always be your miracle. I got mine, and one day, you will get yours! Stay positive, keep talking, keep motivated, and be happy.

Why do you think people shy away from talking about PCOS?
I think this is such a sensitive subject to women, especially those who have PCOS. It almost feels a bit Taboo.

I know from my own experiences with talking about it to people, you can feel judged. Almost like your femininity is being questioned! I’ve found myself on many occasions trying to explain to men and women about PCOS and just what it actually is, and the moment I’ve started talking about the possible symptoms, have noticed them checking me for them. I’ve even had someone tell me I’m ‘basically a man’. Which isn’t helpful! Nor is it going to make people want to talk openly about the condition.

I believe people are afraid of talking about it for that exact reason, being judged!

 

Why do you feel it should be talked about more?
I know there will always be someone in this world that judges you, for whatever reason. But I believe if we talk about PCOS more, then those that actually have it will find their voice. They won’t shy away and hide from it, they would be open and honest with everyone who asked. It’s amazing how comforting it is to talk to someone who actually understands what you’re going through.
Information is key! Maybe the more we talk about it, the more likely the stigma is dropped.
Maybe one day a cure will be found. But until then, we need to keep talking honestly about it. Not only to help ourselves but to arm others with knowledge
I really hope that anyone reading this, or my blog finds some comfort from my story xx

 

 

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