Hello - new to this site, looking for advice

Hello, I'm wondering if anyone can offer me some advice. I'm 43 and I've suffered IBS for years and my periods have always been very painful, including extremely painful ovulation on my right side which has become worse over the last year or so. I just put up with the pain, taking nurofen a lot, but over the last few months I have been so tired and my hormones are all over the place. Last month I had terrible PMT which was only alleviated when my period arrived. However, seven days into cycle I suffered ovulation pain again so only another 14 days until I get my next one and I'm already tearful and irritable. After suffering for so long I paid to see a very experienced Gynaecologist who did an internal scan yesterday. I told her about the severe pain from my right ovary and she said ' that's because you have more endometriosis on that side and also in the pouch of douglas'. I nearly cried because I've thought for ages that I had this condition but scans have never shown anything (I know they don't normally) so I was never offered any other advice by my GP.

The Dr yesterday said I have two options; go in for laporoscopy to quantify how bad the endometriosis is or try Cerazette to alleviate the symptoms. I've had a lap before (20 years ago) so that doesn't bother me that much (although I can't afford it privately) but will they just treat me with hormones anyway? I've never got on with the pill - I've always been very weepy on every pill I've ever tried (and one or two have made my pain very bad) hence not using it for years but maybe this one is worth a shot?

I've been looking at changing my diet (I'm not overweight but my diet is not great) and take supplements to see if that helps. Has anyone else found relief through diet?

I'm relieved to have a diagnosis but I'm also very angry that I've had to live with this for so long. It's very isolating and not having anyone to talk to about it is difficult. I feel like my hormones have long ruled my life and people who haven't experienced it think I'm making a big deal of it so I tend to suffer in silence.

Reading all the stories on this forum has made me realise I'm not alone!

5 Replies

  • Hi - for the scan to have shown endo in your Pouch of Douglas it sounds to be fairly established and unfortunately hormone medications are unlikely to resolve it. At best they may relieve pain temporarily but are not a permanent solution and can mask progression of disease. You need to know the situation and this can only be done by a lap. But you should request referral to a specialist centre now to get the best possible excision of your endo. Click on my name and look at my post on POD endo and the one on how to find a specialist centre. x

  • Thank you for your reply. I'm thinking I will have to have the laporoscopy but at £3k privately I'll have to see if I can be referred on the NHS. Another battle with the GP no doubt!

  • Hi - all but one of the centres are NHS. Get back if you have any problems.

  • Hi, it's terrible that you have waiting this long and then had to go private for your diagnosis, I would do what Lindle said and get a refferal to a bsge specilist centre, they will be able to perform the best excision surgery,

    I wish you every luck


  • Thank you for your reply. I know, it's so frustrating. I think the GP would have referred me if I'd pushed but I'd probably have to wait for ages for an appointment and then have another appointment for the scan. The Dr I went to see is the one who performed my mum's hysterectomy years ago so I know she is good. Now to find out if she works on the NHS! I'm going to give myself a few days off thinking about it all though, it's been such a battle already I need to regroup in order to think clearly!

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