Struggling with endo : I am 23 years old... - Endometriosis UK

Endometriosis UK

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Struggling with endo

Katielouise23 profile image

I am 23 years old and have had 2 ectopic pregnancies in 6 months, one in ever tube and have lost one tube and currently waiting to see if I have to have my other tube removed. While removing my tube they found out I have severe endometriosis which has damaged both my tubes and bowl but not been given much information about treatment or IVF was wondering if someone can help.

7 Replies

Hi Katie. I’m so sorry that you experienced all that. If you go the ivf route, you’ll need to have all the endo excised off and possibly the other tube will be taken out as well if it’s not functioning. If it’s a hydrosalpinx, it could cause harm to the embryo when it implants. So ivf doctors will make the call to remove it or not. Sometime I think they leave it in if it’s not causing toxic liquids to wash back into the uterus. The first step is to find a really good doctor who is highly skilled in excising endo. I suggest following Nancy’s Nook on Facebook. It’s a gold mine of knowledge! There’s a list of amazing surgeons on her page. Good luck.

Thank you so much for your help I have just been left in the dark as they only descovered the endo when they had to remove my tube so that has been there main concern not the endo and yes they have said IVF is my only option was just wondering how effective it is with people who have severe endometriosis.


Sorry to hear of your losses.

I have severe endo, as well as adenomysis, fibroids and bilateral blocked tubes. I’ve just done my first round of IVF and unfortunately it was a fail - but I’m 37 with old eggs, and your eggs will still be young and decent quality. I’ve read many stories of it working for severe endo and time is on your side. IVF is designed to bypass your tubes so the loss of then whilst being heartbreaking, isn’t the end of the road.

Good luck with it all, you have enough things on your side to give you a good chance. I only wish I’d have got started at your age :/

Arww I’m so sorry it didn’t work for you have you still got a chance ? I just feel like so much badness has happened that I have no look in the future Iknow I shouldn’t just see the negative but it’s hard right now to see the positive being only 23 and having all this happen in 6 months.

I know, I can only imagine how rough the last 6 months will have been for you and then to have more bad news piled on top will be horrendous. You’re grieving - your miscarriages, your diminished chances of a natural pregnancy - all this is hard and you should take the time to work through it. You’ll see positivity soon :)

Hopefully this is the end of the bad news, and it’s only upwards from now on 🤞🏼.

Thank you so much just hearing a bit of positivity helps and I hope everything goes okay for you in the future

Although it may not look like there’s any silver lining to your ectopic miscarriages, it’s a good sign that you can get pregnant. So I think the biggest issues causing the miscarriages might me because of the endo and blocked tubes. If they do take out both tubes, it’s great to still have the ivf option. Just make sure to clean up the endo with an excision specialist as that does help the chances of conceiving even with ivf. Good luck

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