Will I be able to have kids with endometr... - Endometriosis UK

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Will I be able to have kids with endometriosis?

ayshmalysh profile image
ayshmalysh

Hey, I'm new here x

I'm 20 years old and have recently been diagnosed with endometriosis, will I be able to have kids in the future? The doctors have said if I want to have kids its something I should consider fairly soon, however I'm nowhere near ready for that. Any fellow ladies out there that could give me some advice?

32 Replies

It’s different for everyone as it really depends on the severity of the endo and where it is.However in saying that I was diagnosed with severe endo 5 yrs ago and have winced conceived twice so it isn’t impossible.

ayshmalysh profile image
ayshmalysh in reply to Rehanat

Hey x

Thank you so much for replying! Congratulations on conceiving twice, do you mind me asking how that was for you? Were there any complications or was it straight forward?

I've been going crazy searching for all sorts online but it literally seems like if I want to start a family in the future... it'll come down to pure luck.

The surgeons didn't really explain how the surgery went very well, all I know is that I was diagnosed with stage 4 endometriosis, everything was very stuck together but they managed to unstick majority of the tissue. They were unable to remove some of the tissue from the bowel, and I have been told to take the combined pill for 3 months without a break. This is all still very new and raw for me and I'm still really struggling to understand certain aspects of the condition.

Will taking the pill for a prolonged period of time affect my fertility?

I don't think I'll be ready to have kids for at least another 4-6 years, but I would 100% love to have a little family one day😩 I'm so scared, I don't know what to do or think at this point.

Rehanat profile image
Rehanat in reply to ayshmalysh

So I had been on the pill for 7+ years and it will not affect your fertility at all, in fact it will most likely help your Endo symptoms and may help keep it at bay. Your endo sounds very much like mine... I didn’t realise until we started trying and struggled to conceive easily, both times it took 2.5yrs . There were no complications whatsoever and I had straight forward pregnancies and births. However in saying that once I was not on birth control the pain i experienced was immense at times - I had a laparoscopy initially (2015) which was when I was diagnosed and then it took 18 months to conceive. After giving birth my pain returned almost straight away and I had an extremely long excision surgery with a bsge registered surgeon. Thankfully since then (March 2019) I have been mostly pain free , I managed to conceive in Nov 2020 and this pregnancy is going well .

In all honesty it is pure luck - we also tried ivf but that failed before we conceived in 2016.

ayshmalysh profile image
ayshmalysh in reply to Rehanat

Thank you so much for your response, It's honestly calming me down so much hearing your story! Congratulations on your second pregnancy, praying it goes well for you lovely💕

I guess I've just got to focus on the present and be prepared for the worst when I am ready to start a family.

Rehanat profile image
Rehanat in reply to ayshmalysh

That’s it - sometimes changing diet can help, cutting down on sugar and dairy as well as exercise.

I’m a firm believer of fate and what is meant for you will never pass you by. You just have to remember to be patient and stay positive.

ayshmalysh profile image
ayshmalysh in reply to Rehanat

Yeah my dairy intake is pretty low anyway and once I've recovered from the surgery a bit more, I'm definitely going to try and start taking up pilates or something of that sort, and just try to live a healthier life in general.

Thank you from the bottom of my heart for your kind words, I feel like I've been losing my mind since the surgery and your advice has really calmed me down💞

Sending you love and prayers for your pregnancy xx

Rehanat profile image
Rehanat in reply to ayshmalysh

Thank you . Hope your journey goes well and don’t let the worry consume you! X

For some reason they always say try early like people are suddenly going to pop out a baby at 20. 🤦🏾‍♀️

Although some women with endo struggle with fertility, many more have babies without an issue. Having endo doesn't automatically mean infertility.

Really important to concentrate on what matters now, which is feeling as well as you can. Worrying /stressing can makes your symptoms worse. xx

ayshmalysh profile image
ayshmalysh in reply to TennisAM

Hey x

Thank you so much for replying!

Your response actually made me giggle a bit, so thank you so much! ("suddenly going to pop out a baby at 20") is literally what I've been thinking since the surgery. I'm still trying to figure out my own life, let alone try and think about bringing another life into this world.

I guess it'll just come down to luck and for now I've just got to pray, hope and carry on dreaming.

Thank you so much for your response lovely! It's honestly made me feel so much better💕

TennisAM profile image
TennisAM in reply to ayshmalysh

Haha I'm glad it made you laugh! I can't blame you for thinking the same. Enjoy your life (hopefully pain free) as long as you can. A baby is a life changing choice afterall.

If you want to laugh more, the reason I'm so sarcastic about it is I've been told many times to have a baby to improve the endo symptoms/cure it. All that rubbish. So the last time I received this advice I said:

"Are you telling me that being pregnant, the pain of child birth, the stress and pain of looking after them for 18 years is easier than having endometriosis?!"

The consultant was speechless but his expression suggested he learnt a lesson. 😊

When you do try for a baby, go for acupuncture sessions with a Chinese medicine specialist, it's really great for endo and also to help conceive xx

ayshmalysh profile image
ayshmalysh in reply to TennisAM

Honestly, I'm so glad someone out there in the world understands why I feel so overwhelmed with constantly being told to start thinking about starting a family at such a young age!

Thank you so much for your response, it genuinely made me feel like I could just breaaaaath 😅

I'll for sure remember the acupuncture sessions when I am ready to have a baby!

I know I said it before, but thank you so much for your advice💖

TennisAM profile image
TennisAM in reply to ayshmalysh

I'm so pleased I helped xx

I know every case is different but I got diagnosed in my mid 20s and had extensive surgery and had kids on my 30s. No issues getting pregnant at all. HTH

Hey x

Thank you so much for your response!

I'm so happy that getting pregnant wasn't an issue for you💕 It really does just seem like it's down to luck. If you don't mind me asking, were there any issues you faced throughout the time you were pregnant? Also, were you on any form of contraception before trying to get pregnant?

no issues at all during pregnancy. I used natural family planning / condoms as contraception. I get terrible migraines on hormones even though the pill/coil would probably be better for controlling endometriosis. I am now in my 40 and endo is back worse than ever not not an issue from a fertility point of few as I am so done with kids.

Thank you very much for sharing your experience, it's definitely put my mind at ease a bit!

I really hope you're doing okay with the Endo coming back worse, the pain it causes is so crippling I don't think anyone will ever have the words to fully describe how it feels.

Sending you lots of love💞

Hi Aysh,I just had an appointment with a gynaecologist, specialist in endo yesterday.

He told me many young women with endo use hormonal treatment to "quiet" the endo until they are ready to try for pregnancy. Many of these young women do have babies, when they choose.

It's not my situation, but thought I'd pass on the info.

Hey x

Thank you so much for reaching out!

I was told the same thing, that the pill will basically keep everything at bay. However, they still said starting a family is something to start considering fairly soon. I'm currently on the pill for 3 months without a break to give my body a bit of a rest, but I'm just worried that when the time comes to start a family it'll be another slap in the face🙍‍♀️ I think because I am so young I've just got to focus on the present and leave the rest up to fate.

Thank you so much for sharing your experience though, it's definitely left me feeling a bit more reassured💕

Hi Ayshmalysh,Having a baby is a such a big and life changing decision so I wouldn’t want to be pushed to make one when you know you’re not ready yet.

In my case I did struggle to conceive for about 2 years. I was on a combined pill for about 12 years prior to that which was helping me keep the endo symptoms at bay. After unsuccessfully trying to conceive for almost 2 years, I had laparoscopy done and endo implants removed. This I believe helped me a lot and then I managed to conceive straight on my second cycle. The pregnancy was very straightforward and I don’t think there are typically any complications for ladies with endo. It is usually the problem getting pregnant but again it varies from person to person a lot. Hope this helps!

ayshmalysh profile image
ayshmalysh in reply to JKT87

Hey x

Thank you so much for reaching out💕

I'm definitely not ready to have a baby yet.. I still feel like a kid myself😂😩

Congratulations on your pregnancy! Although I'm not ready it's something that I'm looking so forward to in the future which is why I got so worried when the doctors said it's something I should consider soon.

It seems as though taking the pill and trying to keep everything as 'calm' as possible until I'm ready to start a family is probably my best option.

Thank you so much for sharing your story lovely xoxo

Hey, Your story sounds similar to mine, I was told in my early 20s that I firstly had Endo and if I wanted children then to do so early and he gave me a time line of 5yrs.

I really wasn’t ready for that so I just carried on and enjoyed life, I thought if I can’t them I’ll just change my idea of what life will be for me.

Once I got married at 29 I started trying to get pregnant, it took about 2yrs.. I lost the first one but it was very early on but I conceived at 32 and had a lovely pregnancy and now have a beautiful 4yr old girl.

Don’t let the Endo dictate your life just enjoy it (especially while you’re so young)

Having a baby you have to be ready for and it’s completely life changing but rest assured that that dr hasn’t set your fate it’s something they have to say to cover themselves. All the best xxxx

ayshmalysh profile image
ayshmalysh in reply to Kimlaura

Hey x

Thank you so much for reaching out!

I'm so sorry for your loss, I can't imagine what that feels like😩 It's something that seems to be quite common amongst women with endometriosis... another thing that's scaring me quite a bit.

Congratulations on your beautiful girl💕 I think the reason I'm so worried about not being able to have babies is because I got married at the age of 19 and only recently have I realised that I would absolutely LOVE to grow my family just a little bit more.

I guess I am young and there is hope, like you said I can't let this dictate my life... there's so much life to live!

Thank you so much for sharing your story, it's definitely put my mind at ease xoxo

I was diagnosed with severe endo, I had my little boy two years ago and didn’t struggle to get pregnant. I was also told five years ago to get pregnant soon or I’d struggle down the line, it wasn’t the right time for us though so we waited until we were ready and we’re lucky enough that it worked.

If you’re not ready for a baby then I wouldn’t try for one, especially as you might be fine and if you aren’t then there is support available to help x

ayshmalysh profile image
ayshmalysh in reply to b_bart88

Hey x

Thank you for reaching out!

Congratulations on your little boy💖

Yeah it seems as though its pot luck and when the time comes I'll find out what's meant to be for me.

Thank you so much for sharing your story xoxo

Hi, 25 years ago I was told the same and at 20 I had a lot of the world to see so wasn’t prepared to have a baby. By 30 I was, I’d had a number of operations throughout this time so when it came time to have kids I needed extra help with IVF (had acupuncture too & felt that helped!) We conceived naturally the second time that I fell pregnant (a few months after a further laparoscopy) Don’t let endometriosis dictate your life, you may need to make alterations to the way that you live but do and experience everything that you want to. One thing I’d like to add; if you need another surgery don’t have ablation, get a specialist in excision - it’s better to get the ‘roots’ of the disease out rather than burning away the top layer (so to speak). Also hormones are good for some, but equally they can sometimes ‘mask’ what’s going on as endometriosis creates its own oestrogen so can continue to grow. Enjoy your life xx

ayshmalysh profile image
ayshmalysh in reply to Simo7

Hey x

Thank you so much for reaching out!

Congratulations on both your pregnancies💕

I definitely need to stop letting this dictate my life and just try and enjoy my life as much as possible. Someone else mentioned acupuncture, so that's definitely something I'll bare in mind.

Also thank you so much for mentioning the type of surgery they carry out, it's something I wasn't aware of as I literally just got diagnosed (this is all still very new to me and I'm learning new things everyday). Is this something I can request on the NHS if I were to ever need surgery again?

I've also seen that some people prefer strictly progesterone because as you said endometriosis creates its own oestrogen. I'm currently taking Microgynom 30, but I'll definitely ask my GP about alternatives.

Simo7 profile image
Simo7 in reply to ayshmalysh

Sorry missed that question: if you need surgery again go to your GP and request to be sent to a BSGE centre, you’ve stage 4 so shouldn’t have any problems with a referral. I hope you’re feeling a little more optimistic about the future x

Please don’t feel hopeless about this. I’ve had endo since the age of 17 (I’m now 45) and conceived my children at the age of 36 and another on my 49th birthday (both times were immediate). I had tube dye from my specialist prior to the first, only for texting my ovary (I was born with only one ovary), but then told not to bother trying as it’d never happen. But it did and my little ones were born at full term by csection and are perfectly healthy. Everyone is different, so don’t think it’s impossible. Good luck xx

ayshmalysh profile image
ayshmalysh in reply to TamazinG

Hey x

Thank you so much reaching out!

Wow, you are one strong woman💪 It's so refreshing to hear that you didn't give up and managed to have two, healthy, beautiful babies💕

I'll definitely try my hardest to stay strong and hope for the best! Do you mind me asking what the tube dye was? Never heard of it before, apologies this is all still very new to me.

TamazinG profile image
TamazinG in reply to ayshmalysh

No problem. As part of one of my many endo removal surgeries, my specialist wanted o check to see if my falllopian tube was blocked or not (it often is in endo sufferers) and his proceeding involved pushing a blue dye down the tube so that they were able to identify and potentially address any blockages.Bizarrely, they said it was definitely blocked, so I came off the pill as it definitely wasn’t helping the endo and then immediately got my son. My specialist was as stunned as I was, so the unlikely can still happen. Don’t fret about it. Pregnancy in endo bodies isn’t as rare as you’d think xx

ayshmalysh profile image
ayshmalysh in reply to TamazinG

Thank you so much for sharing your story, it's been so helpful!

I'm so glad you were able to have a baby💞 I'll definitely try not to worry about it for now and just hope for the best in the future x

I'm still clutching at straws and hoping in my forties. Currently still waiting for my 3rd op, before trying.

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