Referral rejected

Hi i'm new here and I'm being investigated for suspected endo. I've always had heavy periods but after the birth of my son 5 years ago they became gradually worse with lots of pelvic pain on the right hand side. I had a high ca125 level of 35 so they did an emergency ultrasound both transv and normal. Everything was clear and a later blood test showed my ca125 level had gone down to 18. I've been on the waiting list for mirena for nearly a year and in the meantime I've been put on cerelle pop pill. This has stopped my periods but not the right sided pain which I have nearly everyday. My gp referred me to a gynaecologist to do a lap but they refused as they said there was no evidence of any endometroma on the ultrasound. In the letter it suggests I trial mirena for 3 months before they will consider a referral. Should I get a second opinion? I'm in so much pain and can hardly function.

15 Replies

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  • I don't understand how you can be waiting a year on a waiting list for a mirena. Many gp's can do them and if there isn't a gp in your practice who can then there surely is a family planning clinic where it could be done. Unless they have already tried unsuccessfully and you are needing a general anaesthetic to get it put it. ?

  • I know. I'm annoyed I've had to wait so long. At first I thought it was due to our surgery being in disrepair during the Christmas flooding but then the g.p said she wanted to wait until after the lap was done. Now it turns out I'm not having a lap anyway anymore. All they said they could do was give me the pop pill until I'm near the top of the waiting list.

  • That is awful. I hope you're not waiting too much longer. x

  • How long have you been on the pill for? If it's longer then 3 months, get a 2nd opinion. Sometimes general gyns won't consider endometriosis surgery till you've been on the pill for at least 3 months, I know it sucks but some of them just assume the symptoms will go away.

    After my mom had me she was bleeding everyday for months then they had to remove an ovarian cyst but they didn't tell her what kind or anything else they just gave her an iud after saying it was gone.

  • Hi Hannah, I've been on the pill for 4 months now. When I asked my gp I wanted to be seen by an endometriosis specialist she said all gynaecologists are endo specialists and that was that. I don't know what to do. I'd like to think that maybe the mirena will help me and be better than the pill for reducing the pain but I've no idea and I also want confirmation that it is endo as I'm scared to be in this much pain everyday.

  • Depending on where you are it might be harder to find an actual speacilsit who works on excision surgery. Ask for another referral because you need treatment then you need to decide on hormones.

    Not all Gynacologist's are endo speacilsits, endo speacilists are called that and general gyns tend to not understand the symptoms or treatments. My first Gynacologist told me that I had endometriosis but I shouldn't do Pelvic Floor physiotherapy or try anything other then birth control b/c I was young I healthy. Meanwhile I was showing her pictures of my bloating, lists of my symptoms and everything.

    Go on "Rate MD's" and search up Gynacologist's in your area till you find a good doctor.

  • Thank you Hannah. There doesn't seem to be any endo specialists in my area. I'm in the catchment of the vale of York and there doesn't seem to be anyone nearby.

  • I think there is someone in your state who was on a documentary, there's a Facebook Lindle made so people can discuss speacilists

  • Hi yes ask GP to refer you to a different consultant or hospital.

  • Please look at my post on the referral pathway. You are entitled to a lap if endo is 'suspected'. It rarely shows on ultrasound and CA125 is not a diagnostic test for endo. The guidelines confirm it shouldn't be used. I should take the NICE guidelines for suspected endo to your GP and ask for referral to another gynaecologist. Have a look also at my post on the diagnostic lap to be sure they do what they should.

  • Wow thank you that's so helpful. I'll go back to try and get a referral to another gynaecologist. Hopefully it will work this time. X

  • I have been referred by my GP to a general gynae. I have seen him twice. He suspects endo as my GP had done. I had ultra sound scans and they as I expected were clear. Gynae said as I had no cysts on my ovaries then it can't be that bad. He basically insisted I have the marina coil fitted. He thinks this will sort me out but can't guarantee it will stop my ovulation pain, and pain during and after intercourse. But has said it will stop my period pains and possibly my periods. I had the marina fitted on Tuesday. Not going to lie, it was an awful experience that I have shared on here. But I felt pressured to try, like it is a hoop I have to jump through before any thing else will be considered. So now I am waiting to see how things turn out. Gynae told me to continue with my pill gedarel for three months back to back.

    I have had an awful lot of pain since having coil inserted ( it is meant to be easier after kids and I have two) but I found the entire experience traumatic. I went to docs yest and she prescribed me naproxen and codrydamol for my pain. This has helped.

    I hope you find a solution and there are woman who have had great experiences with the coil. If you have it just be prepared ( I don't think I was at all) and have plenty of pain relief at the ready.

    Xxx

  • Thank you. That sounds awful! Has it got any better for you? It's very difficult to find out anything good about the mirena coil. It sounds like it's been a bad experience for you. The minipill has stopped my periods but not the pelvic pain so I can't imagine the mirena coil doing anything different. Xxx

  • Well here I am 9 days down the line. I am still taking the pain killers but kit all the time. But I am due my period in a few days. So I am guessing the usual back ache and cramps due to that. I have had spotting here and there but nothing terrible! I am extremely tired but again that has become quite normal. I am hopeful that I will have some positive feed back in the coming months. But as I said I am now taking my pill back to back while coil is settling. I guess when I come off it I will really work out what is going on. Xx

  • I'm glad things are getting a little better. My periods have stopped but I still get pain every day thought it's not like period pain it's mainly on my right side and feels like pressure and tugging. I'm going back to the doctor this week to ask to be referred to an endometriosis centre as I'm in too much pain to carry on without a diagnosis. Fingers crossed for when you come off the pill. Xxx

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