Endo diagnosis at 24... pregnancy help?! - Endometriosis UK

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Endo diagnosis at 24... pregnancy help?!

Jh14
Jh14

Hi everyone...

I’m in abit of a mess at the moment, I was diagnosed with endometriosis (officially by lap) a few weeks ago after suffering for as long as I can remember. Haven’t had my post op yet but was told it was advanced and was pretty much everywhere... other than my ovaries. I also had polyps in my uterus and have had a Mirena inserted to help with periods etc.

I’ve always wanted children but had planned to wait until we were around 30, but now this diagnosis and the reality of it and the fact it’s likely to return over and over, has made me panic.

I basically need some advice on what you did when you got diagnosed when it came to children? Is it better to have them sooner? Or carry on as planned? The doctors haven’t been any help and I know it’s uncertain but I’m scared not having any clue...

Any advice?

Thanks ☺️

9 Replies
oldestnewest

Hi,

I was diagnosed with stage 3 Endo 12 years ago while having difficulty conceiving my second baby. It took 2 more years acupuncture, dairy and wheat free diet and hormonal treatment to finally conceive baby no 2. Baby no. 3 happened to be conceived unexpectedly on our first night away after no 2 was born. There was only 16 months between the two births. I was 38 when he was born. I breastfed them both for 6 months and ten months and it really helped the Endo. It can back about two years ago with a vengeance with elevated CA-125 and painful periods and ovulation. I now have a 4cm complex cyst and am awaiting a gynae appointment.

I would not delay having kids for two long just in case of problems.

It will help the Endo too by giving your body a break from the periods.

Jh14
Jh14
in reply to Mguilfo

Hi, thank you for getting back to me, it really helps to hear your experience. It seems like you’ve been through a lot with endo, despite having your children it look some time then I guess? I hear a lot of women saying it took ages for one child and then another was unexpected! Which o guess is a mixture of emotions. Did you find the endo diet and hormones work? They suggested the mirena coil for me which is meant to stop/ lighten periods, only had it in a few weeks now so not sure about it working, it’s jjst causing pain at the moment. I think from hearing your story and others it might be worth me rethinking my further and planning it slightly different, kids are something I want and I don’t want to live in the clouds for the next 5 yrs thinking it will happen when I want it to! After this diagnosis the reality has hit home. I miscarried last year at 3 months which really affected me and so I think that’s scared me a great deal. I’m sorry your still suffering, It just seems to be never ending doesn’t it xxxx

Ttc will be so long so absolutely I recommend trying sooner

Jh14
Jh14
in reply to Bdgjdjd

Thank you for your advice,I appreciate it. it’s such a difficult position to be in and so hard to make the ‘right’ decision xx

I'm 25 and had the same decision to make. To me having a child is my life goal and always has been to have a family so as soon as I found out I had the chat with my boyfriend. We are lucky enough to have just bought a house and are in a stable relationship so it was easy was us to agree that trying for a baby was the most important thing for us. However we did talk about it a lot cos we wanted to make sure it was the right decision for us. It could take a month or it could take years to get pregnant and we needed to make sure if it happened straight away we could handle it. You've got to do what's right for yourself and what you really want. I'd be gutted if I couldn't be a mother so even if I'm trying for the next 10 years at least I know I'd tried for all those years, I'd never want to kick myself later down the line if it didn't happened and wonder if it would have done when I knew earlier on. Everyone is different tho and you need to do what is right for yourself. Sending lots of love xxxxx

Jh14
Jh14
in reply to G765

Hi, funnily enough in a very similar position, we’ve not long moved in together and are happy, it’s just such a huge decsision... unlike your partner I think mine isn’t really ready just yet but we haven’t had a ‘serious’ conversation yet as I want to have a clearer idea in my head first, if that makes sense. Like you I’ve always known I’ve wanted a baby, planned to later on in life but since having a miscarriage last year And then this disagnosis it has really changed my view on my life. It’s hard because like you said it could takes months or it could take years, your mindset it so alike to mine about it, I don’t want to look back and think ‘what if’ i decides not to wait etc. It’s so hard and a horrible situation. Are you thinking of ttc soon then? I know I’m not ready (financially) for probs another year. Also like you said, if it’s too soon for us as a couple or for him it might really affect things it’s so difficult, I don’t want to him to feel like he should because of the situation but not really want to? Thank you so much for getting back to me, it’s reslly helped hearing your perspective. Sending love xxxxxx

Heya,

I just want to say I’ve gone through life never particularly worried about whether I wanted children or not. So was never in a rush.

It’s only over the past couple of years that I’ve decided I really would love to have a baby, mainly down to meeting the right man and finally finding someone I would love to have a family with.

So we came off contraception about a year ago, and that’s when my endo symptoms really took hold. They have got much worse since being off the pill, and that is how I’ve come to be diagnosed with endo now.

I am 29 years old. Soon to be 30.

I feel like I’ve wasted so much of my life not trying for a baby. And now that I finally feel like I do want to make a family with the love of my life, this absolute c**t has formed in my reproductive system and I am kicking myself for not reproducing sooner.

Obviously it’s not a dead certain that I can never have children, but with 30 looming ever closer, and endo surgery taking around two years to complete on these damn waiting lists, I feel like I am running out of time and it is heart wrenching.

If I could do it all over again, and I was with the right man, I would absolutely have started trying for a baby much sooner.

It might of been that whatever age I came off the pill the endo would flare up, but there’s always the chance that it wouldn’t of been so bad if I had tried a few years earlier.

Living with regret is the worst. So think very carefully about your decision. It is important that your man is up for it too, but at the end of the day, it’s your body not his.

If your relationship were to break down (sorry) he could go and have a baby with somebody else with no problems. And you could be left with no choice because you waited too long....

Sorry, I hope that doesn’t seem harsh! I just think you have to think of all possibilities. Yes your man needs to agree in order to provide a stable family environment for your baby, but it’s also not his body.

My friend also has endo and has done for 10 years. She’s on her third operation and is also now too old for IVF. She’s passed her time, and it’s because she was with an ex who didn’t want children, who she is no longer with! She wasted all that time with a man who held her back from having children, and now she can’t at all. I feel so sorry for her.

You should weigh up what’s more important to you I guess. Would you feel bitter if you ended up not being able to have children because your man didn’t want them at the time?

But also, at 24, I think you have a few years of breathing room. So I wouldn’t panic too much....

I would just hate your decision about YOUR reproductive system to be based on what a man thinks and wants...

Hi, that’s One of the hardest parts about this, it forces you to rethink everything about your life and how you planned it, although that may sound dramatic for me it’s kind of what is happening! Alike you we hadn’t thought much about it and just said we’d wait till later on in life but of course it doesn’t ‘just happen’, which since diagnosis I have realised the implications it can/will cause.

It’s lovely you’ve met someone who you want to start a family with, it does make such a difference on what you want and don’t want in life! Did you find the pill helped a lot then? When they did surgery they put in a mirena coil for me but it hasn’t been long enough to see any sort of benefit yet.

It’s good to know your opinion on what you would have done because that is something I’m really struggling with, it’s such a big unknown and like you said it’s a risk for such a big decision.

Thank you for putting that side across, to me honest I never even thought of it like that and that is such an important element to it, I’ve been focused on so much else and never even thought of it in that way... no it’s not harsh at all, it’s the reality of what could happen and I need to have a full view on my options and what could happen as a repercussion if my decisions. It is important to me that we are both ‘ready’ and he’s happy but like you said it’s a completely different ball game for him... I guess we will have to have the discussion and if possible meet somewhere in the middle. But I need to remember what you have said and thank you for making light of that.

I’m sorry for your friend that must be awful, I guess you just go through it one step at a time and before you know it the chance has gone. I’ve heard many stories similar and that’s why I’m trying hard to get some decisions made, I know I have some time yet but like you said I don’t want to look back with regret, I wouldn’t forgive myself.

I hope everything goes well with you and you get the surgery soon and fall pregnant. Fingers crossed!

Thank you so much for replying to me it’s really helped hearing your side and opinions.

Sending love xxx

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