Endo & TTC

[Yolo23]

Hello!

The subject speaks for itself… I’m creating a feed for those with confirmed endometriosis to join and give each other support. Im 31 and have been TTC for around 18 months (but longer previously). We have no children and back around a year ago I had a chemical pregnancy - a year or so after what seemed to be successful endo surgery.

I’m not sure about you but the tremendous pain between each TTC cycle, can be really difficult to deal with - let alone the emotional disappointment of a BFN.

I feel that there’s only so long I can be off the pill trying, before I need some normality again - having to work out when I’m likely to be really poorly sucks and im not sure if anyone can relate to that!

Sending love and support to all, xx

Hi @Yolo23 👋 Was just lurking on the threads for something about endo and TTC and came across your post!

I'm 34 TTC #1. Came off mini pill June 2021 and fell pregnant on 4th cycle but had MMC at 10 weeks. Been bouncing between being on the pill and TTC ever since since so completely understand weighing up how much pain you can sustain whilst also trying to have a life and on top of that, conceive....stressful and really emotional sometimes!

Came off the pill again in the summer with a plan to try for 6 months and then be referred for further tests/another surgery if nothing comes of it, but hoping that won't be the case 🤞

Sorry if am asking too much, have you any support for your endo? Found medical professionals who understand are few. Have you looked into support for fertility? I'd be keen to but my DP isn't atm but will have to cross that bridge if necessary. Will stop rambling now!

Hiya. I hope it’s ok to join - I don’t have diagnosed endo yet, but yesterday found out I have an endometrial cyst (with almost all the symptoms of endo) so I’m in the process I guess.

I’m 30 and been ttc for a year this month with no pregnancy at all yet. Reading horror stories on Google but seeing positives in these threads so it’s giving me hope.

@Reesa2022 hello! oh wow our circumstances are pretty similar. The pain of endo is really hard to juggle - I’m doing ok generally but it’s more of a frustration that I know I’m on borrowed time before we have to give up and get back onto the pill for pain management!

Ive not really felt the need to look at support options but there are some good charities out there - endometriosis UK and fertility network are both good if you’re looking for anything 🥰

We’ve been referred for IVF so expect to start some sort of treatment now in the next 6 months (what the specialist said).

No need to apologise for all the qs! I’m an open book so always happy to share ❤️ xx

@Fifii Hi! Of course we don’t mind you joining.

sorry to hear you have an endometrioma - that sounds quite painful. How did you find out? From a scan/ultrasound?

Endo is really hard to diagnose and mine was never picked up until laparoscopy so assumedly you’ll be having one of those soon to sort the endometrioma and to diagnose? Let me know if you have any questions I may be able to help with xx

@Yolo23 thank you! I don’t know anyone irl with it, which is why I’m ending up on Google (the worst place haha).

It was picked up on an ultrasound scan - I’d been to the doctors because I’ve been continually spotting from about 6DPO until my period every month, and because of no success in ttc. I also ended up in a&e last month with the worst period pains of my life.

my cyst is apparently only 2mm in size, so my doctor thinks they’d be hesitant to remove it. I’m going to push for the laparoscopy though - my doctor said she didn’t think the cyst would affect fertility but surely that’s nonsense?!

are you in the uk? And did you have treatment on the nhs?

@Fifii good ole google 🤣 atleast it was useful for something medical related for once - and not just suggesting of instant death… that’s all my google searches end up telling me if I have any mild symptoms of anything 😂😂

Some endometriomas (depending on where they are) don’t affect fertility - my sister had some and she conceived normally. I have none, but confirmed endo and my ovary was fixed to my womb. They sorted this and said we would be able to conceive naturally but here we are 18months plus later… and still no joy!

Im based in Wales and all my treatment has been on the NHS. I will say that I was disregarded for a long time about my endo and even the day of the surgery… my surgeon was still saying they’d unlikely find anything. It ended up (my first lap) with me waking up and her saying that I’d need treatment with another specialist and likely IVF… the specialist after my second lap (the one to sort it) said I likely wouldn’t need IVF but here we are lol.

I’d definitely push for a laparoscopy as you can’t tell what the situation is without one. Scans and internal scans etc can only show so much when it comes to endo and it’s severity unfortunately. Xx

Hi all, 28 with confirmed endo (+PCOS) diagnosed in 2020 from a lap. 2 laps so far (2020 and 2021) and been basically pain free since lap 2 which is amazing - my consultant is my fav person in the world. Been contraception free since July 2022 as we had a short stint at trying before we got married.

Back to TTC so any advice or tips much appreciated!!!

Never been pregnant and cycles are all over the place, never had much of a peak on ovulation strips so taking a break from them as don’t want to get stressed.

@Fifii as you haven't had a laparoscopy yet I would try to get them to do an endo specialist MRI instead, it is what my niece had recently to see if she had endo. The problem with having a laparoscopy is the relatively high risk of adhesions afterwards. Re the cyst it would depend where it is as to whether it would affect your fertility.

@Yolo23 I am sorry the process is so slow on the NHS. I was initially under the NHS and then Dh's workplace private health care kicked in so I was able to see the original gynae at his private practise. That meant finally a laparoscopy (after taking the combined pill, progesterone only meds, then chemical menopause for 6 months to completely wipe it out.) I had a lap booked for the next week! Laparoscopy revealed I still had active deposits so that was a shock to both him and me considering all the meds I had been on. I was told I would need IVF but that in 6 months they would start me on clomid. I did actually become pregnant naturally the first month I tried. We, gynae and me, think it happened because my body was as free of endo as it could be. Took 11 years to get diagnosed.

Once they suspected endo I overhauled my diet, learned to meditate to deal with the pain of endo, did some relaxation yoga classes and took supplements because I wanted to do everything I could to help my body too. I also had some acupuncture. But this was 22 years ago when there wasn't a huge amount of information available like there is today.

Be as informed as you can be to be able to advocate for yourself. https://www.endometriosis-uk.org/ is a great resource. And best of luck to you all. I am med free but not endo or pain free. Stress made my endo worse so the relaxation part I feel helped me tremendously.

@DanisEndo hello! Thank you for joining. Sorry to hear you too have endo but pleased that it’s well managed by a super specialist ⭐️ 😊 🙌

After we started TTC officially, I had a chemical but other than that we’ve had nothing else. Initially I was pleased as it showed we possibly could conceive… but it seems so many things have to align to get a BFP that I try not to stress about it all now. This month I’ve bought some vitamins and I’ll start them off tomorrow - was supposed to have 2-4 bloods as a test but my period this month has been mental so I’m going to wait until next month to do it I think!

Have you been referred anywhere yet for fertility? Xx

@WellingtonPlace thank you for sharing 😊 My endo is thankfully in the background at the mo - aside from pain every month which is manageable with strong meds.

Were on the waiting list for IVF so I’m hopeful that this will be fairly soon (was told in the next 6 months with 1 month already now passed). Amazing news about your positive test after Clomid - where are you with everything now? Do you have a little one? Xx

@Yolo23 thanks!! No not spoken to anyone about fertility yet. After my second surgery the specialist said when I do start TTC to give it 6 months and if no luck to reach out and we can start some tests. Do you think that’s “6 months of consecutive trying” from now or “6 months total” including the few months we tried last year with no success??

Hi,

I have been TTC 15 months now. After no success after 6 months I went for routine bloods and GP told me to relax and that it could happen at any time. Great advise! Then in May of this year I went to a consultant and he suggested I have a laparoscopy to see if my tubes were blocked or if I had endo. I went ahead and had the surgery where he did indeed find endo and removed by excision, it was in my pouch of Douglas area. Very next cycle I got pregnant (first time for me) but unfortunately it ended as a chemical pregnancy at 5 weeks. Since then (July) nothing has happened and so I went to a fertility specialist who has now prescribed me with Letrozole and Gonasi for my next 4 cycles. He also did folicile tracking scan for current cycle on CD9 but he wrote off this month as I was measuring 12mm that day and apparently my Folicle should have been bigger. Currently in TWW but I know my period is coming in a few days.
I would suggest checking your AMH levels as mine went from 10.20 to 5.7 after my surgery and as I am 32, this is really low level of eggs to have left.

I know a few people with endo who have had no trouble at all conceiving and have gotten pregnant naturally so I am trying to remain positive!

Some things I’m doing to help:

• weekly accupuncture sessions
• taking coq10 to improve egg quality, alongside taking folic acid multivitamin, BioCare NAC, Vit D
• going to start regular exercise and get out for walks
• increasing water intake to help improve CM
• increasing my protein intake as I don’t eat meat
• cutting down on gluten as this is causing inflammation

@DanisEndo If it were me, or just count it as 6 months from when you begin trying. I think generally it’s always best to be on a waiting list and continuing to try, than wait longer than neccessary. It takes so long to jump through all the hoops of referrals and seeing specialists that I personally feel it productive to be on the right pathway as early as possible - it always takes longer than you think! xx

I’d just count*

@KatieKatie111 Ive read quite a bit on COQ10 and I actually purchased it to try but on one thread, there was a lady that it had really messed up her cycles. I’m going to hold off trying this for now - she provided some useful info which I can’t find now but it put me off.

Ive not had my AMH levels checked yet so I’ll be pleased once that’s done - thanks for all the advice. Wishing you luck with your very structured plan! 😊 x

@Yolo23 sorry I didn't even get to the clomid stage. Basically I had the lap, was told I would need IVF in the future due to scar tissue and unsure if one ovary was even working due to said scar tissue and despite all the meds I still had active deposits seen when they did the lap. It means I fall into the doesn't fully respond to treatment category.

As I had literally just finished the chemical menopause he booked me back in to see him in 3 months time post op to see how it would all settle. In the meantime I was given mini pill as the chemical menopause is the same meds as IVF the difference being IVF you take it for 2 months I think, for endo you take it for 6 to suppress the oestrogen. That meant I had a lot of eggs to release. Hence mini pill. Babies were not on the cards at that point as I was only 28. I had "planned" them in my early 30s. Dh and I felt like we had only just finished uni even though we had been working for years.

When I saw the consultant again 3 months later it seemed like I had more endo deposits, he suggested testosterone, I said absolutely not, that is where I draw the line. He said to be honest with your endo being aggressive, you've been married for 3 years, you're the right side of 30 for IVF to have a better success rate and this could be a now or never for children. He said I will put it down that you are ttc and 6 months from now we will put you on clomid.

Dh came away from that reeling. Talked about ttc, finances, maternity package from work, length of maternity leave, part time/full time, looked into local childcare costs etc and after a week decided well it isn't like it is happening now, it will be a year then IVF. Came off the mini pill and became pregnant immediately. First cycle. Wasn't even trying really. Massive. but very welcome shock. That miracle is now 20 years old. He has a brother, 17 years old. Took 4 months to become pregnant with him.

Where I am now. My endo came back after I went back to work when Ds1 was 1. Dh applied for a new job in a new location, negotiated his salary to match his current one plus the pittance I brought home after childcare costs and we moved hundreds of miles away. My intention was to get the same job I had had previously which I could easily do. With the move and settling Ds1 into a nursery, unpacking a house, Christmas etc I left applying for the job until the new year and it suddenly dawned on us both how well I had been since the move. As we were planning baby number 2 it made sense for me to not work. So I haven't worked since then. I have been a very long term sahm and on days when it is bad (no treatment since pre baby) I can potter around and Dh used to work from home and do the school runs when I couldn't. But life is good. I have chronic fatigue but I would prefer that over daily pain which I used to have.

@Yolo23 i see what you mean. I think part of me wants to stay in the blissful bubble of trying and hoping we’ll be able to conceive unassisted but can defo see the benefit of already being on a waiting list as and when it’s needed.

@WellingtonPlace wow it sounds as though you’ve been through such a lot! I’m pleased to hear that you have two ‘not so little ones’ now! It’s incredible to hear what people have gone through to get to where they are. I’ll never take it for granted.

Thank you for sharing- it shows there’s light at the end of the tunnel for people x

@DanisEndo Fingers crossed! 🥰 Let’s hope it happens really soon for us and everyone that’s on this platform going through a challenging journey to get what they want xx

Hi All, I'm 30 (31 next month), been TTC for 22 months.
I have noticed heavy periods over the last few years and sometimes lots of pain but not to a point where I couldn't get on with it.
I saw my GP after 12 months TTC, been referred to guy's ACU. Had a hycosy and they saw 2 endometriomas (around 3cm) on my left ovary which means it doesn't really work anymore (they only saw 1 follicle in that side).
We are going for IVF in mid December (I've delayed it as I wanted to prep my body a little more before going ahead).
I'm trying to implement the information from 'It starts with the Egg' by Rebecca Fett.
From my research - all I really know is endo is inflammatory and creates oxidative damage to eggs so I'm doing a Mediterranean and low sugar diet and taking Prenatal vitamin, Ubiquinol (Co-Q10), R-ALA, NAC, Vitamin C, Vitamin E, and Fish Oil. Also doing acupuncture weekly and taking herbs at the same time with a TCM doctor specialising in infertility.
I hope that helps anyone else but I don't have results to support this yet but just wanted to maximise my 1 cycle chance on the NHS!
Thank you for setting up this thread @Yolo23 x

Hey @ayakabb thanks for joining 🥰 It sounds as though you’ve been taking a lot of positive steps! I have COQ10 here to try but someone told me it really can mess up your cycles so I’ve avoided using it for now - let me know how you get on!
Like you, I’m taking fish oil (why are the tablets so bloody big 🤣), vitamin D3 (not sure why thats so specific), and folic acid. This is my first month of being fairly religious but we’re yet to get busy and DTD so that’s not going to help 🤣😂 can’t really blame the vitamins for that one!! Supposed to ovulate tomorrow so not having a greatly active approach this month unfortunately.
IVF in December sounds good - I’ve been referred too and we are expecting maybe Jan/Feb but it’s anyone’s guess. Do you have any idea how it all works with the NHS - as in will you see the specialist in Dec and start right away or do you expect them to try some other treatment first? I was expecting to just start but someone asked me and I’m not entirely sure now!
Where are you based to just get 1 funded treatment? Is it London way? X

@Yolo23 The doctor previously told us to try between 8 - 18 days dpo every other day to try and catch ovulation, but it's better to not get overly stressed about it!
We saw our GP in Jan and arranged for blood test, then referred in March (I believe). We were seen for a first consult in June (which was a bit of a waste of time IMO) - just to get some health info and some advice, but they booked a hycosy. Hycosy was done in August and they let us choose whether to try for a bit longer or go straight for IVF consult. We had our IVF consult in September which technically I could start straight away at the next cycle but I needed a MMR vaccine (because I had no antibodies). I think this timeline really depends on which hospital you go to, we're at Guy's.
Yes we are in south London, which is unlucky because other CCGs in London will fund 3 cycles.
Fingers crossed for you this cycle! x

@ayakabb thank you for sharing - that’s really useful!

Its crazy how it’s such a post code lottery isn’t it. I’m based in Wales so we get 2 funded treatments but they’ve probably explained to you that by that they mean 2 full cycles - so it’ll be one FULL cycle. Full cycle being the key word as I guess you can still have numerous attempts if you have a great egg retrieval and successful process? I’m not 100% sure what that all means in black and white but it appeared to make a difference when the specialist was telling me.

I wish you the absolute best of luck for December 🥰 keep us updated! It’ll soon come around … x

@Yolo23 Yes it's one full cycle (they count the cycle when there's an egg retrieval procedure), so I'll get 1 fresh transfer and 2 frozen transfers (if there are enough fertilised eggs). It may be slightly different in Wales how many transfers they allow.
Thank you! I'm excited but very nervous at the same time x

@ayakabb thats it! We’re the same in terms of transfers. It’s reassuring that there’s more to it than just one retrieval.
ahh I know, I’m feeling the same. Excited but nervous - also understand the method of trying a bit longer before going through the process. It takes it out of you doesn’t it. I wish you all the best xx