Endometriosis UK

Just diagnosed

I am just coming to terms with a diagnosis of Endo. My journey started a year ago when my husband and I started trying for a baby. I was in agony and thought it was just early miscarriages. Initial scans showed I had cysts and this was dismissed. I had been told a few years before that I had ectopian. However, after pushing harder and moving areas. I have now clear tests that I have endo. After a laposcopy I have now been referred to a specialist, as they didn't treat me, due to so much endo. I feel like there's little hope of having a natural pregnancy. Everyone keeps saying they know someone with endo who has gone on to have kids, but am 35 going on 36, so time is ticking. Hormone tests have shown I am not ovulating due to low progesterone and endo restricting my ovaries. Although I have good egg reserves and other hormones are fine. Has anyone else experienced similar? What treatments have you had to go through? I am trying to be very strict with what I eat. Avoiding alcohol, caffeine, gluten and dairy as well as too much sugar. Thanks for reading.

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I'm sorry to hear this. I am very similar. Got diagnosed last year and had a lap to remove as much as possible in Nov. I am 37. I can only advise you to been seen by an endo specialist asap (look up bsge centres)

We are very lucky that we have a 6 yr old who is prob a little miracle as I had alot of endo, and they told me that it would of been there for years. We have tried to conceive a sibling for our son for the last 2.5 years which let to tests and diagnosis.

I also have another medical condition which means I can't have any type of hormone... So IVF etc isn't an option for us. From what I've learnt from research is that you have the highest chance of a natural pregnancy soon after a lap to remove endo, this is why i would advise to see a specialist asap. Stay positive and hope you get seen asap x

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Thanks for your reply. I'm sorry you are going through the same. It definitely sounds like you have a miracle baby there. I wish I hadn't met my husband later in life and it wouldn't feel so stressful and urgent.

I am waiting for a follow-up letter to see the regional specialist, instead of seeing the consultant who did my lap. I just hope that he can help further. I also read that after the lap is best time to conceive, so was very upset when consultant said they'd not burnt it off. I will keep some hope that it is still possible. It really is a journey and I really hope that you guys get lucky again. 37 is still young enough so you have time. X

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Thank you. We are very grateful to have one so I don't feel as much pressure as others. I know it's easy to say please try not to get too stressed as I'm sure that just makes things worst but DO put pressure on the doctors etc as each appointment takes for ever and like you say time is key.

Good luck x

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Hey, do you know why they didn't njrn out the Endo at yojr laparoscopy? I have mine nect week and am worrying about the same thing. It's a diagnostic lap..first one but they said they will remove what they can but jabe also heard depends if they need specialist too. Like you I am hoping to conceive xx

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Hi Lisa, I was a little out of it when the surgeon came to have a talk with me. But from what I remember they didn't want to do anything as it was quite extensive so they think a specialist was best to see. I don't know if it means I will have to have further surgery though. I feel like I wanted answers but it's thrown up more questions!! I wouldn't worry too much - I think if they can remove it then they will - but each case is different. I think they didn't really have time to do mine properly as another factor. And I think it was actually a good call as I'd rather it done right than a botched job. It's really frustrating as it delays our plans to start a family and that's my biggest priority but have realised that health is too. Have to done any dietary changes to help too? I have changed my diet drastically and hope that it also may help our chances. I hope your laparoscopy goes well and don't worry too much about it. Just look after you. x

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