Recent diagnosis please help

Hi I had my first laparoscopy 7 weeks ago due to extreme abdominal pain and pains in my hips and back. They basically have told me that my endo is that bad the only way they can remove it is a full hysterectomy in only 23 and have one child already but would like more. I'm currently on the depo injection and bu trans patch. I seem to have loads of side effects and doesn't help with the pain nothing does in just wondering about other peoples experiences and what choices you made. I can't get pregnant ATM either cus I have an over active thyroid and take carbiminazole which is dangerous when pregnant. :-( thank you xxx

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  • Bless you. Its a shock when you first get a diagnosis. I know it may not help as you are still young but considering your endo is so bad, you are blessed to have 1 child. A lot of people on here, myself included have been left completely infertile and unable to ever be a parent. If however you are not happy with your options maybe get a second opinion. Another specialist may give you other choices so that you can go on to have more children. Each case is different and you are very young to have been offered a hysterectomy. Have they managed to laser any away?

    Best of luck xx

  • They have managed to laser some away in my pelvis but not either of my ovaries and I know I am very lucky to have a child but all my pain has been 100% worse since having a child. They have offered me the injection to turn my ovaries off following the depo injection which frightens me. I would love just to go a day feeling normal. So sorry to hear you haven't had chance to have a little one I don't know how you must feel I'm scared about the fact I may just have one. It's more that the choice whether you want to or not is out of our hands x

  • Tell me about it...I've gotten so used to living with pain, I can't actually remember a time when I haven't had any! My appt is tomorrow and I'm hoping they recommend a hysterectomy.

    Definitely ask for a second opinion or talk to your GP. I think like all healthcare professionals they have to give you worst case scenario. Xx

  • Hi Rellx,

    You absolutely need a second opinion. Find an endometriosis specialist here bsge.org.uk/ec-BSGE-accredi... , go to your GP and request referral to your preferred specialist. Endometriosis is so complex that it has a specialism all of it's own and an endo specialist.

    It sounds to me as though you are with general gynaes who are out of their depth and inexperienced. Gynaes can generally deal with a bit of endo but severe cases should be referred to endo specialists.

    If you are already with an endo specialist then I can only assume that they have concluded you have adenomyosis. This is basically endo embedded within the uterus wall and a hysterectomy is sometimes the only solution. However, some CPs might help with this. I don't think this is the case though.

    A hysterectomy is a last resort and does not necessarily 'cure' endo. General gynaes often recommend one because they haven't a clue what else to do.

    Please really push for that referral. Technically it is not a second opinion but a referral to the appropriate specialist.

    Good luck x

  • Thank you I have got it in my pelvis and on both ovaries I have spoken to my gp today and decided once I'm off the carbiminazole for my thyroid we are going to start trying for another baby and she said if we haven't conceived after 6 months she will refer me back xx

  • Thank you I have got it in my pelvis and on both ovaries I have spoken to my gp today and decided once I'm off the carbiminazole for my thyroid we are going to start trying for another baby and she said if we haven't conceived after 6 months she will refer me back xx

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