PCOS or ENDO????

So, after continuous bleeding since December 2011 I've had numerous blood tests, every form of medication, even more swabs and physicals and a scan, all of which were normal. Despite being fobbed off by a gynaecologist my GP, bless her, sent me for another scan. In nine months i've gone from having normal ovaries to ovaries with a lot of cysts. The sonagrapher believed the were policystic. But this is what I cannot understand (and neither could she), if I have pcos that is so bad as to cause such rapidly growing cysts, WHY has every single blood test returned as normal? WHY have I bled continuously for 15 months? And why do I suffer from pain and ibs like symptoms as well as other issues?

Would it not seem more likely that I have endo?

Feeling so many mixed emotions! But at least they can no longer say it's all in my head! Help please, any other similar stories?

xx

10 Replies

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  • I does sound more like endo to me which would mean the cysts are chocolate cysts. Why your gynea hasn't sent you for a laparoscopy is anyones' guess. I'd go back to your gp get referred back to the gynea and ask for a laparoscopy.....I have endo and adenomyosis and I bled continuously for over 2 years. good luck hun xx

  • I have PCOS and endo and the small cysts will be clear fluid filled cysts not endo-cysts from what the sonographer said to you (which makes sense).

    They say if you have any three symptoms of PCOS then you have it! The symptoms are irregular periods (which you clearly have if your bleeding all the time), cysts on your ovaries (as found at your scan), spots, high testosterone, extra hair growth, mood swings, greasy hair, struggling with your weight, blood sugar problems, problems with sleep, depression, night sweats. There are some more but I'm in a codeine haze at the min and can't remember them and you don't have all the symptoms, it just presents differently in some people than others, and doesn't always show up in blood test because the hormones are often the normal levels but an expert would be able to tell that there are subtle irregularities (if that makes sense).

    Im not saying you have PCOS but there are loads of misconceptions about it and some women do get pain with it caused because their period is in a constant PMS phase, or because they have periods all the time.

    Have you been offered any form of birth control to try and regulate your bleeding? I'm not saying you don't need a lap to rule in/out endo, but might be good if you can try a pill for 6 months to see if that sorts your problem out.

    Good luck honey - I know how hard it is x

  • Hi

    I had PCOS when I was 17-18 years old and they couldnt stop my period, I was bleeding non-stop and the pain was unreal as I had constant period cramps. With pills they managed to regulate it. Saying this now that I'm in my 30s I have endo...so the best thing to do is to give a try a pill as Cloudyrain said and if things dont resolve then have a lap to check whats going on inside. xx

  • Hi Jojo,

    Thanks for writing back!

    I suggested Endo to my GP but she said they would have spotted that on my physical examinations. I said I was pretty sure it could only be diagnosed with a Lap and she was adamant I was wrong. After that I wasn't sure where I could go from there...

  • I tried the Cerazette, Microgynan and Yasmine, they did stop the bleeding but made everything else worse. I couldn't control my mood swings, arguments with my partner would just escalate out of control, I even found myself holding a knife in the kitchen! Next thing I new i'd be crying at a radio advertisement, I thought I was going crazy! It wasn't until I was on a break between pills that I realised it was the hormones causing the problem! Also, no matter what pill I take they leave me unable to go far from the toilet! So because I end up continuously on the toilet, I have to take more of the tablets.

    I tried the jab first and that was when all the bleeding started, they were giving me extra injections to stop the bleeding but after a while they didn't stop it.

    In the end I refused any more hormones from the doctors, the pain and the bleeding was more tolerable than the hormones. After I tried tranexamic and mefenamic acid, they didn't work either. When my first scan came back normal and I refused anymore hormones, they refused to refer me to a gynae and said there was nothing more they could do.

    So now i'm not sure what they can do...

  • You should demand a referral to an endo gynae, remember is your right to do this! you definitely need a lap to get some answers....xxx

  • I have an appointment with a gynae in 3 weeks, unfortunately it's the same lady that sent me away saying it was simply cervical erosion. I asked if anything could stop cervical bleeding, she said no. I then asked why my bleeding stopped whilst on the pill if that did not work on cervical bleeding. I just received a shrug of the shoulders. I also found out to be referred on, she has to agree to it... so WISH ME LUCK lol.

  • Oh hun this is hard, let me tell you...do your own research and find a good endo gynae in your area. If you cant go private dont worry all of them are in NHS too. And then go back to your GP and ask for a referral with the specific name. It is your right to do that. We have all been there with sarcastic and ignorant doctors but there are some that they are brilliant xxx

  • Agree with Jojo to push for a referal but the more you have written the more it sounds like pcos: especially your reaction to the pills and the injection. Have a look at the Verity website because some pills make pcos symptoms better and some make them worse.

    If it is cervical erosion it can be dealt with by diathermy or loop at the colposcopy clinic, but it can reoccur. It's nothing to worry about and is benign. You should make sure smears are up to date though as cervical bleeding always needs to be identified as to whats causing it. It will appear and disappear depending on what contraception you are on - some pills soften the cervix, others toughen it up!, or on what stage you are at in your cycle.

    Good luck honey - and any Doc who says you can always see endo on a scan, or feel it at physical examination needs a serious kick up the butt!x

  • Hi, I have endo and suffered from lots of bowel problems at the beginning. I had lots of bowel exams done and was told I had IBS, it is quite common for people with endo to be mis-diagnosed as having IBS. It eventually settled down. At my first lap it was founf that my womb and bowel were stuck together, hence the bowel problems!

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