Trouble getting heard!

Apologies to any one of you wonderful ladies who has given me advice before but I am getting to a really low point and I don't know what to do. I am 28, my periods have stopped and I have had chronic pelvic pain for nearly a year. I have been so proactive with trying to get it sorted but I feel like I'm going around in circles with doctors. Even paid for two private appointments with gynae's and don't feel any closer to an answer.

After scans, blood tests and ultrasounds last year my doc said it was PCOS but this shouldn't be causing pain and that was that! Since Dec the pain has been getting worse, sex drive completely gone and unable to work. I've been having horrendous nights with hot and cold sweats and pain pain pain. I have started to realise I am grinding my teeth as the pain is so strong.

I'm waiting for blood test results to see what my hormone levels are doing and I'm seeing a gyne on nhs in March. I'm seeing my GP again on Wednesday and I just don't know how to put my foot down and get them to take me seriously. I'm sick of being told I 'shouldn't' be in pain with PCOS, or that you can't have endo and PCOS. I'm getting married in the summer and I desperately want to be back at work, out of chronic pain and to find out if I can have babies.

Any experience, tips or hints would be so helpful,

K xx

5 Replies

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  • I'd try to find a few solid doctors that are educated in both PCOS and endo. Being passed around by them and each one not listening to you is not at all fair. It's just going to stress you out more. Good luck Xx

  • Have they even scanned you to see if one of those cysts has developed in to a whopping size? or checked for endometriomas or fibroids. If they give you an ultra sound, when you get there ask for an internal one, it's your choice, and it often shows up much more than just scan over the tummy as the probe is inside you. (it doesn't hurt but you can feel it moving around as they look for hidden cysts which are usually in the Pouch of douglas, tucked down the back of the uterus if you do have endo.)

    It is unlikely just to be PCOs causing that level of pain for so long, so something else is probably happening too.

    As for stopping periods, was that natural stop due to PCOs, or are you on hormone drugs to stop them or mirena?

    However long it takes to have a lap op for the surgeons to actually look inside and see what's going on, in the meantime you do need to get suitable pain relief to keep on top of the pain.

    They might hve to be so strong that they zonk you out and you still can't work, but at least they'll allow you a chance to cope better with the other symptoms

    There are many types to try and some you can take in combination with others. That is the real priority for the next GP appointment. Even if you can only get him to agree to a two week trial of a much stronger drug. I wish doctors would take chronic pain so much more seriously than they do.

    It's the pain aspect that does all of us in. It's utterly exhausting, and becomes the entire focus of everything you do all day and night.

    Painfree Hugs to you.

  • Thank you so much. You're right, the pain is exhausting and even the look in the doctors eyes seems to say 'what do you want me to do?' They don't realise it takes over your whole life!!!

    I did have an internal exam and this is when they diagnosed PCOS but I was a little concerned at the time that the sonographer said it was difficult to see as there was too much gas! When I spoke to the private gynae, she asked if I wanted another one so I might book that in with the doc on Wed. She also said its my choice whether I want to have a lap or not but she said 'its not without risk' but I've got to the point where I just want them to look inside and see what's going on.

    To be honest,I'm not sure how much will have changed since Oct, but the pain and other symptoms have just got worse.

    So many questions and not enough time,

    Xxx

  • Hi bride2be, if your gynae is going to do a diagnostic lap just to have aloof the risk she's talking about is the risk that every operations carries and is to do with the general anaesthetic. A diagnostic lap is a very minor surgery, I went back to work the day after, and then zonked out for the weekend on the sofa, but was back in again on the Monday morning. It's done keyhole through 3 small incisions through which they insert a camera and a couple of instruments to move things around so they have a good look. I would demand a lap, as if you have endo it's the only way to get a definitive diagnosis, then get on the Internet and look for the closest specialist endo centre to you, go back to your gp with your diagnosis and demand to be referred to an endo centre. You will get the best level of treatment from a centre that specialise in endo. Have a look on this website to find the nearest centre to you and refer to the website when asking for referral from your gp

    bsge.org.uk/ec-history-endo...

    X

    Ducky

  • This link takes you directly to the centres...

    bsge.org.uk/ec-BSGE-accredi...

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