What to do next ?

Hi everyone i could really do with your help. Im really stuck on what to do next. 

on the 1/2/2015 I had my first lap to diagnos that I has endo with an overian cyst on my left overie. So while I was under they removed the endo and the cyst and then started me on a course of hrt for 4 months to see how things went.

So straight after the op I was bleeding very heavily with clots and was told this was normal at the time. Eventually the hrt stopped my periods for a short time and once I had finished the course I was back to square one with the heavy bleeding and severe pain I kept telling my gyne there was something wrong but got no where so I asked for a second opinion. 

I changed hospitals and went to see my new gyne she was great wanted me to go straight in for another lap to see how bad things were. 

So on the 2/3/2016 I went in for the op and she told me I had 3 cysts on my left overie and stage 3/4 endo as it is attached to my bladder, bowl, liver, uterus front and back and inside my womb.

So while she was in there she removed the cysts and most of the endo but she said she couldn't touch the organs so she wants to put me on hrt again for 9 months this time to help shrink what is left inside. 

My dilemma is that after surgery I thought everything was going fine until on the 22/3/16 I came back on with severe bleeding and intense pain I phoned up a week later for them to put me on a 10 day course of mefenamic acid and iron tablets as I'm now anemic which stopped the bleeding. But I have come back on again (when I say heavy bleeding I mean flooding through clothes and changing my pad every hour) 11/4/16 this is really getting me down now and I'm so convinced that if I could have a hysto this would help me no end my problem is I'm only 34 and they keep telling me I'm to young if anyones any way of helping me I would really appreciate your input. Thanks in advance. (And sorry I went on for ages) xx 

4 Replies

  • Hi I don't know if I have any useful to suggest as to what to do next but when reading your post just wanted to say I'm so sorry sounds like you've had a terrible terrible time. Are you def sure that a hysto is what you would want given your age? In terms of other suggestions- I had the Modena coil fitted and this stopped my bleeding altogether, I also take evening primrose and liquid iron ( for animia) I find diet and exercise can help , I also take mefanemic acid which does help too , have you tried yoga/ reflexology/ acupuncture I've heard these are also good. I guess you may have tried these things, or feel they may not help enough but maybe worth exploring before a hysto ( I'm 33 with 1 son and no plans for more kids but would still like the option) best of luck xx

  • Thanks for your reply. I have had the coil fitted 3 times but because of my periods being so heavy they kept being flushed out so they decided that wasn't an option any more. I do have 2 children and don't want any more, I just feel that life at the moment isn't worth much if this is what I have to look forward to. We don't do much as a family because I can't go out of the house when I'm on just in case I flood through my clothes and I need a toilet to hand x

  • Hi I'm assuming you are with a general gynaecologist. With stage 3/4 endo she should be referring you to a specialist at a BSGE centre. Have a look on the BSGE website and find one near you then go back to GP and ask for a referral to them. 

    A good endometriosis specialist will be able to excise the endo . When you say inside womb I'm assuming you mean adenomyosis, which is where endometriosis grows within the muscle wall of the uterus. Unfortunately the only cure for this is a hysterectomy, but I think there are other treatments that may help. Again a specialist would be able to help you . 

     The fact she has not refereed you to a specialist is against nhs protocol. 

    Please get that referral as you are being treated inappropriately.

    Good luck.

  • Hi - you are being treated against NHS protocol. This lap should have been diagnostic only and as soon as they saw stage 3/4 endo you should have been referred to a specialist centre. You will need to make a complaint as this is the only way we can hope to stop this inappropriate care from happening but for now click on my name and read my posts on the treatment pathway and the one on how to find a specialist centre. x

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