Infertility fears pls help

[strawberrysurprise]

Hello,

Shamelessly posting in here for traffic as I desperately need help.

Really desperate for some positive stories/advice here as I'm struggling an unbelievable amount to think positive. Apologies in advance if this post offends anyone - this is absolutely not my intention.

I've got endometriosis and a potential problem with one of my tubes which has fluid on/in it? I'm completely clueless about things like this so really hoping for some help. Started ttc a few months ago. On wait list for lap.

Can somebody pls help as I'm beside myself with worry and I feel like I've been handed an infertility sentence. Thank u

I can't believe I'm saying this - but I can offer some hope ☺️

My GP referred me for fertility investigations after a while of nothing and during this process I had a laparoscopy as they suspected fluid in a tube (there wasn't) but it did find endometriosis, and removed fibroids, adhesions and a large cyst from my left ovary.

The NHS route was slow, was an emotional and physical rollercoaster over a 4 year period. It's one of the hardest things I've ever been through, finding support will help you so much, whether it's professional, on support forums or friends that understand (sometimes hard to find).

However, last year we saw an acupuncture fertility specialist who asked more questions and got to to know me and my husband more than anyone else had before. She referred my husband for DNA fragmentation tests and a urologist (as after prolonged infertility it's rarely just because of one side) and found me an excellent endometriosis surgeon who did a detailed MRI and booked me in for a 2nd laparoscopy for excision surgery. Also basic lifestyle improvements, and targeted supplements based on a vaginal microbiome test we're all implemented.

Long story short, the surgery is cancelled as I got pregnant naturally after 5 years trying.

My advice is.... Try not to put your life on hold. This is something that some people just cannot time, and sometimes it takes a lot longer than we wanted it to! Try to do more of whatever makes you happy. That's my biggest advice. With the NHS appointments - you need to advocate for yourself, research online / speak to friends. The more knowledge you have the more it will help as they do get it wrong sometimes.
The past year I put a lot of effort into trying to make some kind of piece with a life without children, find the positives and I think that helped take the pressure off, and made it one hell of a shock now I'm having to forget all those reasons! This is something that you only start to do after years though - you're still very early days and there's so much hope! Look up the stats of how long it takes people to conceive, it's roughly something like 90% of people conceive within 2 years, it's good stats!

What helped most was our acupuncturist that had specialist training and referred us to people that were great at their job.

I wish you all the best - if there's anything I can do to help please ask away. Sending hugs - I understand how horrendous a thing it is to go through, I hope you find some support to help you through it x

One thing that's worth doing (I'm afraid I don't know how!) is requesting a surgeon that does excision removal for endometriosis (there's 2 different ways to remove it and this is the gold standard). I didn't have this the first time, but the 2nd time I knew more xx
The endometriosis charity website has lots of helpful information. While it can make it more difficult to conceive, many many people with endometriosis do go onto having children xx

So much depends on your age. Answers will be very different if you're 25 or 40.

@daysfilledwithdappledlight

Thank you so so so so much - definitely so helpful to hear there is hope!!

So I've had an mri which has detected the endo (long suspected myself BUT my pain is an absolute minimum compared to a few years ago when it was really bad - unsure if this is relevant). Endo has been described by one doctor as 'small lesions' and he did provide quite a bit of comfort in me thinking it isn't actually that bad!!

How accurate actually is an mri for detecting endo? I know a lap is the best thing but surely an mri has got to be up there due to the detail and expense of them etc?

The suspected fluid on one of my tubes was detected at the mri (I had this a few months ago) and surgeon described my tube as elongated and looked like it has fluid in. This is where I'm stumped. I have absolutely NO idea about anything to do with tubes :( surgeon then said that the fluid could just be something temporary that has cleared up on its own or it could indicate a blockage. I'm being referred for hsg to see.

Now I've came home, googled and all I can see is that I'm gonna end up infertile and I literally can't cope.

May I ask what made your doctor suspect fluid? I'm so pleased to hear you didn't actually have any fluid - let's hope I'm the same!

Thank you again for replying xx

@daysfilledwithdappledlight

Sorry forgot to add - my surgeon has said he does excision!

He's told me to go away and see if I fall pregnant whilst on the waiting list - if I do then I won't need to bother with the lap/hsg. He then said too if I'm not pregnant by then, the surgery will give me a 6 month fertility boost.

It's so hard not to catastrophise and think the absolute worst! Xx

@Orangutanteddy

I'm 29 xx

It sounds like you’re in a great place and all the steps are being covered!

The MRI doesn’t always detect it, but because it has with you it’s helpful as you’ll have less surprises after the laparoscopy as they’re not going in blind! While the MRI has found it, the surgery will remove it which will hopefully help with pain and conceiving as there’ll be a happier environment!

Re the tubes - mine was suspected after the hsg I think. She’d warned me that in the laparoscopy they may need to remove a tube (and at that point potentially an ovary because of the cyst on it) but was quite reassuring that while it obviously reduces your fertility a bit, you normally ovulate from alternate ovaries, so if 1 tube was removed, your other side would still be fully functioning! I also have a friend that had her tubes cleared in surgery… I don’t know much about the options if they do find fluid I’m afraid, but I’m sure there’s a wide range of treatments and even worst case scenario, you’d still be able to conceive naturally or with assistance.

I know how scary it all is - but finding problems can be helpful because then they know what to fix! It’s well worth telling your doctor your fears of infertility, they should be able to reassure you. I’m obviously no doctor, but although you’ve got some problems that will make it harder and it may take a little longer, that’s very different from actually being diagnosed infertile ❤️

Just want to offer a bit of hope - I had severe endo, was told I would have great difficulty conceiving and also that IVF wouldn’t work well for me. I had an operation to remove the larger cysts and cauterise, and to remove the blood from outside the uterus etc. anyway I ended up on the coil to halt my periods and therefore halt the retrograde bleeding. Took the coil out and conceived when I wanted to.

Your plan sounds excellent and you will be ok. You have a very good chance at your age and with the plan in place to conceive so please don’t worry. The Internet can be a scary place x

Have you had your tubes checked for scarring?

@Giraffesandbottoms

Thank you so much.

You and @daysfilledwithdappledlight are calming me down so much tonight thank you.

I haven't had any tests so far - I had pelvic surgery to remove an endometrial cyst but that wasn't actually in/near my reproductive organs - it was more my groin if that makes any sense!! I had to have an mri for this as initially was diagnosed as a hernia but ultrasound wasn't clear as to what it was.

Thank you for reassuring me, both of you, it's so difficult for me to not feel hopeless as I'm so scared I can barely sleep. I've been quite lazy with ttc too so I've definitely not put my all into it (scared of failing so avoid it instead! 🙃) xx

I am with you. I totally understand - I used to cry when I saw a buggy (they were everywhere) as I was so desperate to be a mother and was told there was such little hope, by a top consultant and also by the internet. I had also had abdominal surgery as a child and the expectation on top of everything was that the scar tissue would be too extreme to even operate. I’m lying next to my children now. Don’t panic until you know what you’re dealing with; and even then there are so many ways nature can surprise you, so many times doctors are wrong and so many other avenues to explore x

Couldn't agree with @Giraffesandbottoms more ❤️

Thank you again so much ♥️♥️

Out of interest, completely understand if you don't want to share with me, how old were you both when you got pregnant? I am concerned I've left it so late to get help!

Xx

26, 28 and 30 - I think at 29 you’ve got plenty of reason to be very optimistic x

I started trying at 30, and am pregnant now at 35 x