Let’s Chat with Phoebe
by Phoebe Kipen
Hi Blog, my name is Phoebe and I thought I would share my story of dealing with Adeno and PCOS.
I was first diagnosed at 21 years old but looking back my symptoms have been present since I started menstruating. I got my period just after my 11th birthday and I can remember them being crippling right from the start. I used to bleed 12 days on and then have a break for 12 days before starting all over again. It wasn’t until a rather embarrassing teen moment that I really started on my journey to get a diagnosis, however.
Picture this, you’re 15 years old, with all the normal body issues that goes with that, and your dance school gets a gig to do the opening ceremony for a big publicly broadcast sporting event. They had us wearing navy blue Lycra unitards and dancing on national television. I got through the opening
number and just as we did the final kick, I feel this excruciating pain in my lower abdomen. I can’t
breathe but instinct kicks in and I make it backstage where I passed out. A green whistle and an ambulance ride later I’m in surgery at the Children’s Hospital. Turned out I had ruptured my fallopian tube, torn it clean through. At the follow up appointment with the paediatric gynaecologist we went through my whole history, and she realised that I ‘wasn’t normal’. I was put on my first pill and off I went, periods got more manageable, I put on tonnes of weight but otherwise had minimal side effects.
Over the next few years my health wasn’t great but whenever there was a pain flare or something happened, no specific diagnosis got made, until I was 21. I started seeing a new GP and after explaining my history and the fact I felt that my pill wasn’t working as well as previously, she sent me for an internal ultrasound. Now, I should preface this with at the time I was studying science at university but was completing my honours year in a reproductive biology lab. The scan clearly showed multiple cysts on both ovaries. I remember reading the report that just stated 35 cysts each side, like they had lost count after that.
Being in a similar field I asked my boss and a close family friend who had been working at Melbourne IVF who I should see as a gynaecologist to help me navigate my fertility options into the future. Best decision I have ever made! I love my doctor. Right from the start there was no doubt about how I experienced my symptoms. No questioning if the pain was real or in my head (like some ED doctors I had experienced), it was all about knowing what to do if it happened and what the plan of attack was for me. He managed me well for the next 5 years with one small surgery after I grew a tennis ball sized cyst on my left ovary. But in 2018 I started studying Physiotherapy and my symptoms started to change. I was getting very bloated and while I had been skipping my periods, I felt sick if I skipped them now. Sex was starting to give me a true sense of bruising for about 48 hours after. I went back to my doc and after having an internal scan I was diagnosed (as best they can diagnose without removing your uterus) with severe Adenomyosis. You know it’s not a great indicator when the specialist radiologist tells you that she has never seen a worse case than you in 20 years of scanning. Helpful? Not really, but I did have an answer, rather than thinking I was just ‘stressed’ or making it up.
I got through my Physiotherapy degree and got really excited by pelvic floor physiotherapy. I got an amazing job working at one of the big pelvic floor physio clinics which was a blessing as I learnt tonnes about myself but was also confronting at times when you see so much of yourself in patients. There were multiple detours on my management for adeno along the way including a ‘fun’ day where I went into labour rejecting my IUD while trying to take a Pilates class… would NOT recommend!
The thing I have realised now is that living with these kinds of chronic diseases is about learning to adapt to not only your body and it’s needs in a whole different way but that feeling like you have influence on the system is major. We all have days were the pain or the symptoms is overwhelming, and you just feel like you can’t function and that’s when you need a plan. I talk to my patients about what’s in your toolbox. This includes your team like your doctors and allied health professionals like me (physiotherapist), Psychologist, massage therapist, whoever gives you energy and helps fill a piece in the puzzle. No one person is the be-all answer with chronic illness, we just can’t be. That includes us as the patient. I know there is things I can do to influence my symptoms when I feel like crap, do I want to always do them? NO! you feel like a big blob who’s exhausted and in pain the last thing you want is to do some stretching or go for a walk, but I think having the power to be productive when you feel hopeless is important. I know that we don’t always choose the things that are best for ourselves but taking ownership of what you can do for yourself rather than feeling like the only solution is to rely on others is big.
Now as a Pelvic floor specialist physiotherapist, I teach my patients about this and most of them feel so empowered to have a plan of attack when they need it. We are there to help whenever but for those who take this approach it feels more like a team effort rather than me as the health professional dictating a patient’s choice. Adeno isn’t easy, it brings new challenges all the time as I am currently discovering going down the road to hopefully starting a family, but I don’t feel as hopeless as when I was a teenager and I think its from years of finding my team and building my toolbox.
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