Looking for a little advice...

[nikaykay]

Hey guys I’m 23 from New Zealand and looking for advice I suppose...I haven’t been diagnosed with anything as of yet but all symptoms point to endo. I get extremely heavy periods for 3+ weeks at a time until I take mefnamic acid pills to stop it as at that point I am drained, exhausted and can’t deal with it anymore. I get horrific pain almost every day whether I am bleeding or not, the pain ranges from a dull ache to feeling like a red hot iron is stabbing my insides or I am being squeezed very tight to the point of bursting inside (so hard to describe!) I seem to be getting terrible hormonal symptoms like acne, oily skin and hair, grumpy and fatigued a lot! I get pain with intercourse if it ever happens because I always seem to be bleeding and often get bowel problems not sure if hormonal or due to the amount of pain killers I take. I also seem to be passing huge blood clots which freaks me out and often nearly pass out from pain. Currently taking the Ava 30 pill to try settle things. Tried the mirena IUD and was in such excruciating pain I had it removed after 6 weeks. I have tried a myriad of hormonal contraceptives to try and control it as well as every painkiller under the sun, currently have codeine and tramadol which don’t seem to work at all and make me feel ill. I have seen a specialist and am on the waiting list for a laparoscopy and the chronic pain clinic. Have had multiple lab tests which showed nothing as well as an internal ultrasound which showed nothing but a small amount of free fluid. My specialist doesn’t seem to think there is anything wrong with me and that my pain is “psychological”. I’m so tired of being in pain and having to deal with all these “womanly issues” I feel like I can’t talk about it anymore because nobody believes my pain is real. Why would I lie about it? I am not hopeful that the laparoscopy will show much as I have been led to believe it’s nothing. It’s affecting my life and my job terribly and I’m unsure of what do do anymore. I am in the public system as my health insurance policy was taken out after the problems started (years ago) so private isn’t an option.

I just feel so lost!

[Hidden]

Hi, huge hugs from one New Zealander to another. I’ve been lucky, because we are living abroad and my health insurance covered everything privately.

How long is the wait list for your lap? And how long have you been waiting so far? Is it possible that if you took out health insurance now that even a 1 year wait for the insurance to kick in would be a shorter time than your wait time on the public waiting list?

You NEED to find a doctor who believes you. It is not good enough that your doctor dismisses you and thinks it’s all psychological. I’m assuming you’re meaning your GP? Find a gynaecologist. A lot of women on this forum talk about BSGE Centres (endo centres) and I wish there was something like that in NZ. Perhaps you could get in touch with Endo New Zealand and ask them if they have any doctor referrals near you.

[Hidden in reply to Hidden]

nzendo.org.nz

[nikaykay in reply to Hidden]

Hi there, wait time for my lap is 4 months and I’ve been waiting for 1 already so it’s definitely quicker to wait. The doctor I am referring to that seems to be fobbing me off is the gynaecologist I have been assigned at the hospital, my GP was actually very helpful as I had to be referred multiple times to even be accepted to see the gynae team and he sorted it all out for me. The gynae I saw was hesitant to even offer a lap, he told me he just wanted me to see the pain team to get psychological help for the pain as he didn’t believe there was anything wrong with me seeing as all my other investigations came back clear. I also have a history of ovarian cysts which I have had removed via a lap many years ago yet he still wasn’t concerned. I didn’t think this was good enough as I have been suffering with all my symptoms for over 5 years now and it only seems to be getting worse with time. However I pushed for a lap as I am really hoping for some answers as I can’t go on living like this forever. I of course will see the pain team still because I do need psychological help because all of this is getting me down and I need to find alternatives to living on heavy painkillers. I just think he was putting off the actual problem. I saw another gynae in one of my many stints this year being admitted to the hospital who wanted to do a lap and maybe start the shots to induce temporary menopause but the new one seemed to think it was unnecessary and that it was in my head. I’m not sure how it work, can I request to see the first gynae again or do I have to stick with the new one since I’m in the public system? It’s all just a bit of a mess and to top it off I’m about to start my last semester of nursing school and can’t afford to be taking time off because of this illness and pain.

Sorry for the ranting and rambling haha, big hugs to you too

[Hidden in reply to nikaykay]

I personally think the hospital system in NZ is ridiculous. It’s so hard to get a constant line of communication with one doctor; You have to go through so many people, email this, phone that, wait, wait, wait. You could certainly request your old gynaecologist, but requesting it via the hospital will probably fall on deaf ears. However, they will likely have their own private practice outside the hospital, so you could try and find it. Try typing their name in to Google (along with your location etc), and it’s possible their private practice will pop up. Then you could make an appointment with them directly.

Your current gynaecologist sounds like a dick. “It’s in your head” is the typical way of dismissing a patient because the doctor is out of their depth and doesn’t know what the issue is.

I hope your wait isn’t too much longer! And I hope you get the answers you deserve.

[nikaykay in reply to Hidden]

Thanks for your support, I have an appointment for pre assessment for surgery hopefully I’ll be able to speak to someone about it then. Us girls seem to get dismissed a lot. I find it difficult to speak to male doctors because although they are experienced in their field they have no idea what it’s like haha.

Thanks again