Referral

[Faylen34]

Hi so my story to date, I have had ovarian cysts every 6 to 12 months for about 12 years. Everytime intense pain, bleeding, few ruptures requiring surgery over the years. Repeatedly told I'm young (I am now 31) and people can have constant cysts but no further investigation offered as to why apart from ultrasounds and birth control changes. Told I have IBS and that's why my periods are awful. Anyway, fast track to January 2024, symptoms start again (this time only 5 months since my last painful cyst), I go GP and tell them I can feel I've got another cyst and tell them my pain, bleeding etc. Get sent for a scan in Feb. This time they are say I have large cysts on both sides that are endometriomas and send this next day to my GP for a referral to specialist and im told GP will call me with scan results and next steps. It's now April I had no contact from GP, still in pain, bleeding daily, no idea anymore on periods, bad ibs flare ups. So I went GP today to find out they were supposed to refer me to a specialist for investigation on endometriosis but their was an error and they didn't send it. I advised i wasnt happy and it's finally been sent, the doctor was awfully rude to me before this but thats another conversation... Now I'm going for a cancer antigen test on Monday to check levels incase my referral can be fast tracked.

Until then I've been told to take buscopan and paracetamol and expect a long wait for gyno. Feel quite drained and sad to keep going through this rodeo. Just want an answer and to move forwards. But nothing seems easy or clear cut when it comes to gyno.

Thanks for reading and any advice or experience is appreciated.

[Bloatbaby]

Hi Faylen, I'm sorry to hear that you have been let down by your GP, it's frustrating when they make a mistake but just say sorry like that makes it OK. OK I cam only tell you my story so far and hope that it will ease your mind on what's to come. So I had the ca 125 cancer marker blood test which was high and so I got a fast track 2 week internal scan, they then asked me to come back in 3 months to see if it had changed to determine if cancerous. It hadn't changed too much so was confirmed endometrioma and I would wait to see gynae, saw a gynae consultant 9 months later, with no support in between and then when I saw gyane they referred me for a laproscopy, said endometrioma won't go away on there own like normal cysts and therefore best to remove it, fast forward 8 months and I've just had my pre op, waiting for a surgery date but could be another 3 months wait.

I've had no real support from my gp but I think it's due to the lack of knowledge around the subject other than pain relief. I've tried it all, I feel mefanemic acid helps with NSAIDs but I just have learnt to cope with the symptoms. Ovulation pain is generally the worst for me so I write of 3 to 4 days each month just trying to get through the pain instead of doing life. I'm also doing a bit of my own research into immflamatory diseases/problems and how our changing our diet may help. A good book I have just read is inflammation spectrum and I plan on giving that diet a go to see if any of my symptoms improve. I've also recently taken up vitamins daily and greens again there's limited research in direct relation to endo but I'm willing to try anything.

I've found the best support I've had is from this page and the endo webinars on the endo site. Sending you lots of love

[Faylen34 in reply to Bloatbaby]

Thank you for your reply and so sorry that you have been on such a wait and journey so far. I hope that it gets better for you and hopefully surgery date isn't too long. Yes 100% an apology from GP would of made me feel better but unfortunately I was met with excuses.

Long road ahead. I am partly to blame in a way as I've always just accepted what I've been told over the years. ' Just take paracetamol go a&e if worse or a rupture' and 'hormones try this birth control' 'oh far too young to have anything else'. And I've just said oh okay. This time I'm not say oh okay I want to have a clear action and plan.

[Faylen34]

My CA 125 test came back today, only had it yesterday. Very high got to have an 'urgent' appointment tomorrow to discuss it and the next steps. Glad I am finally being taken seriously but also terrified of what will happen next and what the result truly means for me.