Endometriosis UK

Just need to share

My journey began 10 years ago when my husband and I started trying for a baby. Like a lot of endo sufferers my diagnosis didn't happen until I came off the pill and the problems began. As a teenager I thought the chronic pain and heavy periods were 'normal'. 8 years on, 3 large endometriomas followed by 3 surgeries later, lots of tests, failed attempts at trying to conceive. I've now discovered I can't have IVF as my endo is too chronic and my surgeries have done irreparable damage to my ovaries. I was only told this yesterday, it feels so unfair and I feel so alone. Just needed to 'get it off my chest' so to speak.

5 Replies

Oh dear, that is very sad news. You must be feeling really low. I don't know if feasible but could you get a second opinion? Have you been to a specialist centre?

I hear the same story a couple of weeks back, very hard news to take when all you want is to be a mummy. Don't give up, I've read amazing stories. Good luck and hugs xx


Thank you for your kind response. We've not had a second opinion yet but they are forwarding our notes to us so we can do so. It feels like they've taken the only thing I had left - hope. It feels like they give you this news, say that's it we can't do anymore, then send you off as if it's nothing. Like you say, amazing things can happen and who knows what the future holds xx


Ahh, don't give up hope, don't let the buggers take that. Be positive and get reading Lindley's post. All the very best xx


Thank you 😊


I am so so sorry for what has happened. This just should not still be happening. When you come off the pill you are suddenly subjected to the mid cycle levels of oestrogen that have been suppressed by the pill.

You need referral to a specialist centre - click on my name and look at my post on finding a specialist.

Where is the endo apart from the ovaries? Are you having pain at times other than your periods? Endometriomas represent long standing endo as they take time to develop and you will usually have endo elsewhere. The next most common place is behind the uterus called the pouch of douglas that it often missed by general obstetricians, even after multiple surgeries, so the problem becomes compounded. Look at my post on pouch of douglas endo to see if you identify with it. x

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