TTC - Endometriosis

[lauraxoxo]

*Hi All

I am new to this so hope i am posting in the right place.

I have been TTC for over 1 year now.
6 months ago i was taken to hospital with severe pain which was determined to be a ruptured ovarian cyst* 🥺
*
The Dr looked further and saw i had scarring and said it is most likely endometriosis. After going home and looking into this more it worries me so much but makes sense why im having problems..

My Dr finally referred me to gynaclogist but with all this covid i am on a long waiting list

I have recently started taking pregnacre tablets so im hoping this may help. 🙏

If anyone has similar experiences to share or can recommend anything i can try or lighten me up with some success stories i would be so grateful.

Thank you in advance 💕

xx*

Hi @lauraxoxo

You will need a laparoscopy to confirm the endo and to see how extensive it is / the stage of it. They hopefully will be able to remove a lot of it / all of it during the laparoscopy, after which there is a period of a few months when many people who have had this done conceive naturally. However, if you don't you will likely be put forward for IVF since it does grow back. I had it on my ovaries (endometriomas) and they told me to have IVF straight away because they didn't want it to affect the ovaries any more than it already had.

Endometriosis can cause a toxic atmosphere for eggs to develop, bit it affects people in different ways. Some people who have it mild have huge problems conceiving, some have it severe but conceive easily.

I don't have a positive story myself yet, but plenty of people do, either naturally or with IVF.

Thank you for all that info! Did you get referred or private? I feel like this wait to get seen is taking forever and I just want to know what to do, like you said it grows back so I'm worried it's just getting worse xx

@NewSew00 xx

@lauraxoxo - sorry, didn't mean to worry you more, when I say it grows back it's generally over the period of a year or two I believe so not super quick!

I was referred via NHS at the beginning of last year, but then covid hit so I managed to get it done privately as part of my work health insurance. I believe these sort of appointments / ops are starting to get back on track so hopefully your wait won't be too long. My initial wait for NHS gynaecologist was I think 4 months. All that being said, most things to do with fertility are a long waiting game unfortunately :(

I did have a scan done back in 2019 and nothing was picked up then so must be relatively new.

Oh wow that was good you managed to go through insurance. I was told i would have an app. by september last year :( I may look to going private.... so costly though 🤯 but hopefully worth it.. xx

@NewSew00

Hi @lauraxoxo, just to say scans do not always pick up endo. I had half a dozen due to pain and infertility and I was told everything was normal, it was only after I had my laparoscopy did they confirm I had moderate endometriosis. I don’t have a positive pregnancy story for you unfortunately but really hope the surgery resolves your issues. Best of luck!

@ShiMo wow i think it just confuses me more and I struggle to understand because no one seems to have definite answers at the moment.
I have already had a pregnancy (before I think this all started) so I know my body knows what to do... it's just frustrating 🙄 thank you for your comments really appreciated

xx

Hi @lauraxoxo,

I'm having a similar experience at the moment (- I think), so it's comforting to see this thread. I hope you're doing okay.

I've been trying to get pregnant for over a year with no joy. I've never had any period pain or history of anything I've ever suspected to be endo but in September I had a bit of bleeding from my belly button during my period, which I just assumed was some sort of infection...but I've had it during my period every month this year. My doctor has referred me to a fertility clinic and thinks it is "very relevant" to what's going on, whilst another doc has said it's probably endo (+ so does Google but I know looking on there is naughty!)

So I am waiting for an appointment to see if it is endo, and if it has got anything to do with me not getting pregnant. In the mean time I'm getting myself massively upset/stressed as I'm assuming the worst which is silly! I just find it hard not to let my mind run away with itself till I know what's going on. Once I know one way or another then I can make a plan and deal with it, but right now I'm in limbo and it's really frustrating.
Interesting to read the comments here about how long it takes to get diagnosed, I will definitely push for thorough checking when I'm seen.

I've been told I can get an appointment at the fertility clinic in about 3 months, but in the mean time I'm having the endo looked into privately through my OH's work healthcare.
I've no idea what happens if the private appointment suggests endo is causing fertility issues as we can't afford to deal with fertility privately.

I hope you get your appointment soon and get something in place to manage whatever is going on x

@lauraxoxo @Jackie02
Hi ladies any progr for either of you since your convo in Feb?
I have just been told (after a year and half of TTC) that I have endometriosis, my only 'symptom' was spotting between ovulation and period... I didn't even know this was a symptom.
I have my appointment 4th June with the fertility clinic and am now paying to have a the Laporoscopy op privately (13th July!) to remove the endo...they will then tell me the damage and if I can conceive naturally or if I need IVF.

I'm nervous and scared and it was all such a shock as was not expecting that outcome when I was reffered to the clinic as didn't even know I had an 'issue' to be resolved!
Xx

Hi @Boz22,

Yeah I've made some progress, and it is positive so fingers crossed for you too.

I had an appt through Bupa with a gynaecologist and went in for a laparoscopy. The doc was v sceptical it was endo at my consultation but it turned out I have stage 3 and it's quite widespread. I was also shocked like you, really shocked! Whilst I thought I had endo cos of my bleeding, since I had no other symptoms I assumed it was minor but it doesn't work like that!

They removed my endo there and then so all done in an hour or so. If you're worrying about the procedure then if it helps, mine was pretty much painless - for me the mental load from the last few months and the affects of the anaesthetic were worse. I took some time off afterwards to just get back to being me mentally and physically.

The doc said that she didn't think it would have any impact on my fertility - I'm not sure if that was because she had removed it or if it was never likely to.
I've since been to the fertility clinic and been told the same. I was a wee bit gutted there wasn't a magic fix as the Bupa doc mentioned pills the clinic could prescribe ....but it turned out that was if I hadn't been ovulating and that's not the case for me.
So - we've been told it's likely to happen and that it'll just take time but we've been added to the IVF waiting list just incase. The waiting list is over a year so the doc hopes we will conceive in that time.

It's all positive, but it really did send me on an emotional rollercoaster so I know where you are. I was in tears when they were saying there was nothing wrong just because I was expecting pills, not straight to IVF. It's mad!

I hope you get some positive news, but either way it's just good to get it looked at and get things moving. Whatever happens you'll have a plan and know what the next steps are.

I hope you get on alright xx

Thank you soooo much for your message. Its made me feel quite emotional! I haven't really spoken to anyone going through the same!!

I am really happy for you that you are in the process and that the surgery etc went well.

I am nervous about the surgery mainly the aneathestic... And I guess the pain after... I'm one of those people that get everything on the worst spectrum!!

So weird when you get told you have something which you are totally unaware of or the severity of it. I mean I didn't even really know what 'endometriosis' was.

I guess I will be in the same boat as you after. Try to conceive naturally and if not IVf! The fertility doctor said 50/50 chance so we shall see.

Glad you are recovering from your operation and I wish you all the luck with TTC. Xxx

Hi Ladies

@Jackie02 brilliant news that you have had the laparoscopy and starting IVF! How exciting! How's that going for you? xx

@Boz22 Did your operation go ahead in July??

I finally managed to get an appointment and I had my Laparoscopy on Monday (9th Aug) I'm still a little sore / bruised but all healing well.

So with me they found 2 small freckle amounts of endo, so diagnosed with mild endo. They didn't remove anything as they said was so small so I guess I'll just carry on as normal and let my body tell me if I think I should request that they remove it. However they said this shouldn't affect fertility :)

They also done a dye test on my fallopian tubes are all was clear so I feel really relieved!

I have been advised that my next steps now are to follow up my partners semen analysis and that he actually gets further tests carried out!!

xx

Hi ladies,
@NewSew00 @lauraxoxo @Boz22 @Jackie02
I was hoping you could let me know how your situations have progressed?

Today I received news following my recent ultrasound that I have most likely an endometrioma on my ovary and fluid in my pelvis suggestive of endometriosis.

Next step is a gynaecology app to discuss what to do, assuming laparoscopy.

I’ve had one MMC and a chemical pregnancy. Nothing for 8 months now.

I am so worried that my ovarian reserve will be affected. I’m 32.

thanks x

@ChickenT2b

Hello ladies
@NewSew00 @ShiMo @Jackie02 @Boz22

So since my laparoscopy in August 2021 I continued to take ovulation tests and pregnacare tablets but nothing.

We decided to go private and get both of our fertility tested. this was around Jan 22 I started looking online and speaking to a lady from a clinic, by now I stopped testing so often as I was giving up hope to be honest.

In April 22 we were decided on what package we were going for £700! And was ready to book! I just needed to wait for my next period so they could take the blood tests at the right time.. but it never came!

I am now 34 weeks pregnant, due 20/01

Dreams really do come true! Don't give up hope xxxx

Hi @lauraxoxo i @ChickenT2b

Congrats Laura, v exciting times ahead!
Really pleased it worked out for you.

I have also been luck enough to fall pregnant and gave birth to a wee girl in May this year. Like you Laura, we didn't need IVF in the end. We were going through a move from Scotland to England, lock down and job changes while all of the endo and IVF stuff rumbled on so my stress levels were v.high. I was told I'd likely conceive within 6 months of the laparoscopy and I was sceptical but as soon as we got into the new house I fell pregnant - around 3 months after the surgery. I'll never know what made the difference, the surgery or having a home and my stress levels dropping, or both 🤷
I remember saying to my husband the month we got pregnant that I just felt like I was back to myself and I felt good again, then boom, it happened. I definitely think stress was playing a part for me as I felt my.mindset change. Easier said than done I know, but try not to worry too much till you know where you are with things. The docs will keep you right. I had widespread stage 3 and am in my v late 30s and fell pregnant. I remember being convinced that the endo was going to have made me infertile, but here we are. You just don't know. And even if it had there are so many other options out there which I was starting to look at. Don't lose hope, and try not to think the worst till you know a bit more xx

@lauraxoxo @Jackie02 thank you both for sharing 😌 sometimes it really does help to just hear some positive stories. Congratulations to you both! Xx

@ChickenT2b i don’t have endometriosis but just wanted to jump in on the low egg reserve point to say that even if your endometriosis has affected your egg reserve it shouldn’t affect your chances of trying naturally (once endo is removed) and if you did have to go down the ivf route you have age on your side. I have very low egg reserve due to surgery on one ovary. When I started ivf at 34 I was told that the quality of eggs is largely dictated by age - under 35 and you should have ‘good’ eggs and improved chances of ivf.

best of luck on your journey xx

@lauraxoxo @Blacksheep33 @ChickenT2b
Hi ladies

I had my laporoscopy in July 2021.
I then had IVF starting in October 2021 (they said there was a chance I could still conceive naturally but they said let's just go ahead and help you).

I had a low egg count (10amh I think). I managed to get 6 eggs,3 of which fertilised. I had a failed round December 2021.

However I had a second round end of Feb 2022 with a frozen embryo and currently have a 5 week old beautiful baby boy in my arms.

Everything was worth it. 🥰

Best of luck, they can do amazing things to help! Xxx