PCOS and endometriosis

I was diagnosed with PCOS in the autumn after being in a great deal of pain and following a lack of any periods for 18months. Following hormone treatment and some more examination the doc is convinced I have endometriosis too- I have a hosp apt in a month with a gyne. I'm in so much pain and so tired all the time, I've had to take time off of work and I don't feel like I'm getting any support or empathy from the doctors. I just wanted to see if anyone with similar experience had any advice as this is all new to me!

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  • Dear bride2be

    Hello.

    I have had PCOS and extensive endometriosis for twenty+ years now. I have had so much surgery I have lost count and numerous medications have been tried. During my last consultants appointment, it was recommended to me that I have a total hysterectomy but I am going to avoid that option for as long as possible.

    The great news is that I have three wonderful children. All conceived naturally with a little bit of medical help.

    Please feel free to ask me anything and I will do my best to support you.

    Lots of love.

    Barbara.

  • Thanks Barbara. There is just so little information about having both PCOS and endometriosis and its so scary not knowing what is happening in my own body. I'm getting married in June and we want kids so fertility is a separate issue and I just feel like I'm not getting any real help and guidance from my GP. Just really confused.

    Katie

  • Dear Katie

    Congratulations on your future wedding in June. I hope the sun shines for you both!

    It's really important to get an understanding GP and gynaecologist so that you can be informed about the best treatments for you. If your GP is no good I would really recommend you change to another one.

    Barbara

  • From my knowledge PCOS is not supposed to make you feel much pain or cause too much fatigue, it does sound more like Endometriosis. I also have Endo and polycystic ovaries (but not the syndrome) as well as suffer from ME. I think we can share a similar experience when it comes to not knowing what was/is cause of our pains, being stuck in a kind of limbo and feeling misunderstood. The good piece of news is that these conditions are controllable, its just the waiting and the lack of support that is the difficult part. I hope this forum helps with the support part, you're not alone in this at all.

  • Thanks helgio. It is the waiting that is killing me. I've been passed from doctor to doctor to nurse etc for so long and I just want to get it sorted. I've been signed off work and I don't know how I'm going to feel physically when I go back but I'm desperate to and my hosp apt isn't until march- I can't stay in bed with a hot water bottle until then! What should I be telling my doctor?

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