A bit lost

[Daisy63]

Hi

I recently had a laparoscopy and saw the surgeon four weeks later, which was Xmas eve. He explained I have stage 3/4 endometriosis and that he just doesn’t know about fertility as some women struggle and some are fine.

I am 35 I know that I have probably left it too late for a child, with no intention and now I am scared and feel lost as to what to do or think next. I am in a relationship but I feel I have to make some big decisions quickly and feel panicked.

The surgeon was very supportive and said to ring him when I’m ready for a next step but at the time I was so taken back I said I needed it to sink in.

Not sure if there is an answer to this I just wanted someone in the same position to say these things to

[Rehanat]

Hey- endometriosis does make it harder to conceive but not impossible. It took me 2 1/2yrs but we did it ... there r other options, ivf etc but again nothing is guaranteed so it’s just a personal choice really.

I’m waiting for a 2nd lap as I have severe endo on my bowel, ovaries and behind my womb. I have been lucky enough to hav 2 girls so the fertility part isn’t a huge deal this time round xx

[Daisy63 in reply to Rehanat]

Hey there, thanks for sharing, that’s good to hear then so hope is not lost. Iv haven’t actually tried for a baby but there’s lots of things going around in my head. Thank you x

[Rehanat in reply to Daisy63]

If u want to ask anything the n feel free to do so xx

P.s I did have a cycle of ivf which failed before we conceived naturally x

[kelsbels88]

Hi ladies

I too have stage 4/severe endo and my bowel,ovaries and uterus are all involved there is even potential talk of removing one tube depending on what it looks like in there when they next operate.

So I can understand what you’re saying. We are currently in that limbo place. My oh wanted to try the ivf incase it did work and I thought surgery would be better to clear out as much of the endo as possible to give the ivf the best chance. My specialist explained that the endo can in some women make the environment hostile for both the sperm and implantation.

I am in no way at all saying it won’t work for you or anyone else I just no that it is highly unlikely the ivf will work for me in my current state. My cycles are so painful that I’m doing it for me first, as much as I’m desperate to start a family with my husband I know I couldn’t live with myself if I didn’t put everything I have into fixing myself before trying to have a baby as much as it hurts knowing others around me can fall pregnant so easily.

If anything this is a very personal and individual disease and I truly believe there is actually no right or wrong answer or decision just what is the best and right decision for you as an individual. I hope you find some peace with a decision soon but don’t feel like you have to decide right now either make sure you think about all your options.

Good luck

Kelly xx

[Daisy63 in reply to kelsbels88]

Thank you there’s some wise words for me there. I think your plan sounds right, having treatments first means all is as clear as can be to try. I wish you masses of luck and hope it works for you.

I’m sure what I’m feeling and thinking is normal as I didn’t expect such a serious conversation with the surgeon, I thought I had a bit but hearing him say ‘everywhere’ stunned me a bit.

I really appreciate your reply x

[kelsbels88 in reply to Daisy63]

Oh honey anytime if want to talk pm me.

I think that’s how it is for me and I know then that I’ve done everything I can to help me.

As for your consultant everywhere is a bit general for my liking 🤔 you could be sarcastic and say well it’s not on my lungs is it and then say well it’s not everywhere etc but I get what he’s saying metaphorically. I believe that if he says it can be a hostile environment then at least by removing it it may be less hostile just going to be a long wait for me as my surgery will not be for at least 6-9 months so going to be 2020 probably before we even start trying for our miracle.

As I said don’t rush any decisions make sure you thoroughly think about all your options at least then you can go into it knowing you thought of everything.

Here if you need me keep me updated xxx

[Daisy63 in reply to kelsbels88]

Thank you Kelly. I will bear you in mind to message. I’m going to take some me time and digest everything. I wrote everything down that he said as well so I will re read the notes and see how I feel in a few weeks. Speak soon x

[Moonglo]

Don’t feel pressured to do anything, make sure you are looking after yourself first. Part of the illness is making tough decisions and acceptance. X

[Daisy63 in reply to Moonglo]

That’s a good point, I’m focusing so much on everything I ‘should’ be doing rather than focusing on what I’m actually thinking. Thank you x

[Moonglo in reply to Daisy63]

You’re welcome! X

[SarahMia227]

I'm not an expert in fertility or anything, but my mum had severe endo and had me at 38 and my little sister at 39, with no medical intervention. Try not to panic - but I understand the feeling that you have to make big life decisions sooner rather than later, lest they be taken away xx

[Daisy63 in reply to SarahMia227]

That’s reassuring, I am so glad I posted on here now to people that understand :-). Really helped ease my stresses so I can think straight. Thank you x

[Ally86]

Hey Huni,

I am 32, 3 year Married, TTC for 5 years, 3 Miscarriages, 5 Laparoscopys, 2012 Endo diagnosed and I'm stage 3-4. We are currently in the process of starting the fertility process. I have to have blood tests on day 21 of my cycle for 3 months to check my ovulation, I have had a hysteroscopy to check my internal womb, had a ultrasound scan to check for cyst's on my ovaries and the condition of my womb, my husband has also given a sample to check his count. Everything so far has come back positive. If I'm still not pregnant by the end of January they are giving me a hormone pill that will make me more fertile. I have been advised to have some eggs freezed for IVF.

The most important thing is that you speak to your partner about what the consultant has said and what your options are, because you do have options. Do not let Endometriosis take over your life. US women are so much stronger.

It's our body......not endo's!

Happy New Year xxxx

[Ally86 in reply to Ally86]

All in 6 weeks. My consultant is AMAZING. One of the best endo Specialists. Happy to share his details xx

[Daisy63 in reply to Ally86]

Wow thank you for sharing and giving me some positivity, I didn’t realise there was so much help. I am currently chatting to my partner to get his perspective and make some plans. I will come back to you for details... thanks again and fingers crossed for you x

[Daisy63 in reply to Ally86]

Fingers crossed for the baby I meant x