I'm so sorry to be posting in a diagnosed forum when I have not yet received a diagnosis- but I need some advice on receiving appropriate testing and treatment. I have read so many stories of women being brushed off and receiving limited follow up which delayed their diagnosis, and I want to know how to advocate for myself- or if there is even any point.
I am 31 years old and have 2 children. I was diagnosed with PCOS when I was 17.
15 months ago, I became really unwell unexpectedly. I was at peak fitness and had just completed a full marathon, even coming third in the race! When overnight, I couldn't run anymore - even 5k felt hard (and I mean overnight quite literally.) I was exhausted and not recovering from the fatigue. I also started having back pain, bleeding after sex and exercise, bad cramping-type abdominal pain, and abdominal swelling. I went to my doctor with these symptoms because it was impacting my running ability (and my sport means the world to me), and she performed a pap smear and referred me for ultrasound.
The pap smear came back positive for precancerous cells and HPV and the ultrasound showed signs of endometriosis and adenomyosis, and a "collapsing" cervix. I was referred to a public hospital as I don't have private health insurance and can't afford it currently. The hospital never contacted me for an appointment so after a year of waiting, I returned to my doctor for follow-up. She did another Pap smear as I was due for it and an updated ultrasound.
The second pap smear came back positive for HPV and precancerous cells again. The updated ultrasound showed 30+ cysts on each of my ovaries, abnormal fluid in the abdomen, and that my left ovary has now grown fused to the back of my uterus in addition to being enlarged and tender. The updated scans also repeated that I likely have adenomyosis or endometriosis. Again, my doctor referred me to the same public hospital - labelling it as "urgent" this time. This time I received a letter from the hospital saying they won't see me for a biopsy or further testing for at least another year.
My symptoms are the same: bleeding after sex and physical activity, abdominal swelling that is painful, lower back pain, and cramps that make me nauseous - and now more recently indigestion and frequent urination/difficulty fully emptying my bladder. I know all these could be endometriosis too... I just would like that confirmation.
Does my lack of follow-up testing and treatment sound appropriate? What should I do- is it at all worth it to pay out of my own pocket to see a gynecologist at this point or should I just wait the extra year and hope for the best?
I've booked a follow-up with my doctor September 18th.
Sorry for jumping on your board, I just really need some sound advice on if I should fight for myself here or if it's the kind of thing I should leave to the professionals.
Hi MJ1, I would def pay to see a gynaecologist! You’ve already waited a year and then to wait another year doesn’t sound right!! Does your doctor suggest paying to see the gynaecologist? Yes sometimes you have to put up a fight for your health. So very sorry that you are so unwell and the health system is failing you. Hope you’ve got someone in your life to support you through this. 🙏💕 LindaG
Yes- thank you, I do have a supportive partner. It's hard not to feel like I'm being silly and dramatic about it all.
My GP initially asked me to go private, warning me there were unpredictable wait times for public, but I am not in a place where I can afford it (I'm currently completing a master's degree and have to take lots of unpaid time off work for practicals.) However, I have now actually been waiting 15+ months since my initial referral. I understand waiting a year for follow-up is standard procedure for abnormal pap results, but it has been over that now and I've now had 2 abnormal results. Apparently, the protocol recently changed, and they now like you to have 3 abnormal results before they class it "semi-urgent" and will perform a biopsy. This is why I wonder if I go private, they'll do it sooner regardless so I have some reassurance, given my symptoms. The public hospital did say if I had symptoms I should be seen for a biopsy now still, but my GP and they don't seem to think the symptoms I have been experiencing count.
I also have a lump (can be felt and seen) in my lower abdomen my GP reassured me was nothing & it now goes blue when I'm physically active, but I feel too silly to bring it up to her again.
I have a follow-up with the same GP booked for mid-September, and I'm trying to muster up the confidence to express my concerns again.
sorry you’re being brushed off. quite frankly this is appalling. it sounds like you’ve got some pretty serious symptoms going on, what are they waiting for? i’m sorry the public system is being so dismissive.
i’d 100% pay to see a gynecologist, they don’t mess around and you’ll get some answers asap hopefully.
please give us an update and let us know how you’re going x
Be part of this supportive community