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Endometriosis UK
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To conceive or not?

Hi everyone, great to find an online community about this :)

I was diagnosed with suspected endo this week. It'll not be confirmed until the lap but they seem pretty certain, so let's see what that brings.

My hubs and I were told in no uncertain terms if we want to have kids it's now or likely never. It's not something we've ever focussed on, let alone planned, but always left the option open that one day we might.

I have no idea how to decide about this. To be honest, I'm inclined to think that if having kids is not right for us now a diagnosis shouldn't change that. But I guess a lot of you have had to go through the same decision. Do you have any advice? Any regrets (either way)?

I'd really appreciate other perspectives.


7 Replies

Only you can answer that question, unfortunately! You both need to talk, look inside yourself, will you be forefilled without babies? If there's any part of you that may possibly want to be parents then you have to take the plunge. Everything happens for a reason, what will be will be, there's so many clichés out there, none of them will do, you have to be certain before you rule anything out. Its gonna be a long road whatever you decide but talking is the key, everything will be easier if you do it together, as a couple, that union will get you through the dark times, a problem shared etc... xx

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Hey, we were told at 25 to ttc then and that Ivf probable at 27. At 27 I was told I needed a hysterectomy to get better. I spent the best part of 5 yrs in and out of hospital having operations and procedures. For the first 2 years it was simply to manage pain and was told I should be fine for 5 years after op no. 2. After the hyst prognosis it was a bit of a scramble to get ready for babies - however by this point there was severe damage to my bowel so ttc was delayed whilst trying to sort the mess out. The one straight bit of advice was do not wait beyond 30 to ttc with Endo - we told the docs we wanted to try despite needing more surgery just before my 30th bday, I had 2mc but now happily preg. For us we always wanted kids so the stress this out us through over nearly 6years was immense. After 4 ops and numerous invasive procedures I was totally exhausted and the thought of Ivf was totally draining so it was a massive relief that we were lucky enough to not have to go through anymore. 

Have the lap and see what the outcome is - stage 1-4, where the Endo is, if further surgery is required (this is possible if you have moderate to severe disease as they don't have the time and equipment etc there in a diagnostic lap). Having the lap will place you in the best position to ttc anyway, if you don't decide to try straight away make sure to either go on the pill poss back to back, or have hormone injections to stop your periods as this will conserve the work they have done and this your fertility. 

Only you two can decide what you want to do. If we hadn't have wanted kids I'd have had a hyst 3 years ago. Just bear in mind you are always better to try and get ahead of the game with Endo. You'll know better how you feel and what you want post op.

Good luck with everything x

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Hi, you might have a better idea after your lap. It will confirm the diagnoses and give you an idea of the stage and location of the disease.

I was diagnosed with severe endo which has caused significant damage to my bowel and adhesions. I had a lap to help unstick my bowel and remove a lot of the endo.

My surgeon told that waiting (especially until I was over 30) to have children may not be advisable. I have PCOS and a partially septated womb which didn't help matters. 

Following my second surgery we chose to try for a baby. I honestly didn't know if I was ready but I couldn't bear the thought of not having a child. I now have a very lovely little boy and I wouldn't change my decision for the world.

As other posters have said it is a question for you and is a massive decision. Having my son completely change my career path and has unfortunately made my endo worse meaning I am waiting more surgery. 

Good luck x

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I didn't find out that I had endo until age 30, and by that point it was stage IV and I have a lot of scarring (including in my tubes), adhesions, and damage to my ovaries and I've been told it's unlikely I will ever be able to conceive naturally.

Since I didn't know it was endo I was experiencing until this point, I didn't have to face the choice that you're dealing with now. Nonetheless, I still don't have regrets about not having had a baby at a younger age. My mental health was very unstable at times during my twenties and I wouldn't have been able to care for a child consistently. So although I have grief sometimes, I also feel a sense of acceptance and that me giving birth in this lifetime is not meant to be.

As others have said, I can't know what the right decision is for you. However, I do think it's possible to make peace with your decision either way. Good luck :)

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Hello. I'm not really in your circumstance, and I have never been. I had a right side adnexectomy (excision of the uterine tube and ovary) caused by endometriosis (with a very, very big cyst) and the thing I hoped for the most while entering the operating theater  was to still be able to conceive one day in my life ( the second one was to alleviate pain). 

I think your query is not properly put. The question is not " if it is right for you and your husband to have a kid NOW", but if it is EVER right to have any kid. I'm saying this because a diagnosis of endometriosis can cancel that "ever" and make it "never". Yet, I get from your post that you have  "left the option open that one day  you might". One Day . I think that that  "one day" just wants to enter in your life a little bit sooner (than planned). I also believe that a life should always be cherished and preffered over any mistimed moment in your life. To have a kid is a blessing ( I saw this in two highschool friends with little to no means who nevertheless managed to raise and provide for the kid). They love him madly and have overcome material difficulties. I also know people who dearly love the kids they initially considered "unwanted" because it wasn't the right time.

My advice is to let your kids come in your and your husband's lives with no boundaries. Not because of fear, but because this is an opportunity to feel more free and  to welcome love / kids in your lives. Just like a member said above:  "I wouldn't change my decision for the world". 

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Hello, you should ask yourself - do you want children? Does your husband want them? You are in position to make a decision now whether to have them or not. It is never a 'right time' to have a baby so why not now? If you want children, you wait, endo gets worse and then when the doctors tell you that you can't have them, how would you feel?

I've got 2 children, I'm 29 now and just recently I've been told I won't be able to have any more - just as well I had them early! I couldn't imagine my life without children and seeing posts of others who can't have them naturally and even IVF failed them, it just breaks my heart. 

Its your body and your decision - that's the most important part. 

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Hi everyone - thanks so much for your really supportive posts! It's given me a lot to think about. I'm still not sure what our decision will be but it's really good to hear your stories :) Lap is in a few weeks so I'll find out more from that x


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