Endometriosis + 2 MCs, looking for hope 🙏

[Tor88]

Hi everyone. I'm 34, I've had to miscarriages (one at 9 weeks and one at 6). After the second I did some private fertility testing as I've always experienced pretty extreme period pain and wanted to make sure everything was ok. The scan picked up a cyst which a follow up scan on the NHS has just confirmed is an endometrioma, meaning I had endometriosis. I was also given a lowish AMH rating, 8 out of 50 (was told below 6 is a problem).

I've now entered full blown panic mode. I am desperate to have a family, it's one of the only things I've ever been totally sure I want. I wanted to start trying years ago but put it off after our wedding got pushed back 18 months in covid. I am just terrified of the onward journey and what it might take to get one baby, let alone two.

I would love to hear from any other women who have got both endo and had miscarriages. Did it work out for you in the end? Did you do anything to help get and keep a successful pregnancy? Or anyone else going through a similar thing please feel free to join as well 🙏 thank you 🧡

Hey,
I am in a similar situation. Was originally diagnosed with endometriosis as a teenager, but never had surgery as scans always "looked normal". Had the spiral for the past 8 years, then removed it last fall and started ttc. Nothing happened until a positive test in April - obviously I was over the moon, but ended up miscarrying at 6 weeks after a suspected ectopic pregnancy. Had more tests afterwards and turns out one ovary has gotten stuck in my abdomen (not where it should be) and on the other side the fallopian tube has scarring due to endo. This has never been detected before and I feel so disappointed that I'm just finding out about this at 34 and like time is running out. Also found out I have AMH of 3.9, but actually doctor has stressed that I shouldn't stress too much abt that number. It can fluctuate between cycles and you can also have your progesterone measured just after ovulation, which will indicate the quality of those eggs left...

Anyways, sorry I don't have more uplifting things to share atm, but at least I wouldn't worry too much about the AMH. I am curious if you've had any consultations with your doctor about what happens next? I am coming up on 1 year of ttc and feeling like I want to meet my doctor soon and see what my options are rn...

And if someone has been in a similar situation and ended up giving birth, I would LOVE to hear your stories!

Hi, first, so sorry about the loss of your two babies. Absolutely devastating. I had endometriosis surgery at 36 for endometrioma (TTC since 35), got a miraculous pregnancy just 1 cycle after the surgery and then miscarried at 12 weeks in 9/2022. Still TTC. Coming up on what would have been his due date, and I am both grieving and panicked.

One pregnancy could just be "chance," but 2 means you will likely have another pregnancy and therefore your rainbow baby- just keep trying! Best wishes to you, and please update if you had another pregnancy/birth.

Although they ended in a loss the positive thing to take away from it is that youve been able to get pregnant.
I have a friend who has endo and she tried for 4 years before conceiving her little boy. She had one miscarriage about year prior to him.
Do you have a follow up consultation? There's are some options

Hey guys, thanks so much to everyone who has replied here 🙏

I feel so guilty coming back with this update but in case anyone in a similar situation finds this I feel I should... I'm now 6 months pregnant. I'm obviously not completely out of the woods yet as I don't have my baby in my arms, but Ive just hit 'viability' so I'm feeling positive.

So it was a complete whirlwind, I posted this in desperation early sept. As sept progressed things got worse, I hit the due date of my first pregnancy the same week that I got a private endo consultantion (a specialist clinic in London - £400) which diagnosed me with severe and deep endo, fibroids and polyps. I was advised not to have surgery on my endo or cyst in case it further depleted my ovarian reserve, but was advised to get the polyp removed as these can cause miscarriage. I was also advised to consider egg freezing asap and pursue IVF. I was devest by how quickly it all escalated, but basically by paying that £400 for the private consultation I was then able to go to the NHS with all the info I had and get an immediate fertility referral.

I was i a complete daze with it all, then I got another positive test at the end of sept... At first I was kind of devestated because I had been trying to arrange this polyp removal, so I just felt utterly convinced that I would miscarry because I hadn't been able to do that yet..I was told if I made it to 12 weeks the polyp wouldn't cause an issue after that. So between that and the endo increasing MC risk I just felt hopeless and spent a lot of the first few months crying and feeling so so sure the loss was coming.

The weeks ticked by, and somehow I made it to 12 weeks (boy did I sob at that scan).

For anyone reading this who is in a similar position - I'm so so sorry you're there, I've never found anything more frightening and overwhelming in my life than the prospect of infertility... My advice is, find out all the information you can on your conditions and use it to push the NHS like hell to support you. Because of my diagnosis I was able to get prescribed progesterone and aspirin after two miscarriages, not 3. I have no idea if that made the difference, but this is the first time I've had that stuff and the first pregnancy that continued...

I also don't know whether this pregnancy was just pure luck or not, like I still think I might really struggle to get baby #2 and don't know what the onward journey is... But for now, incredibly grateful and wishing everyone else on this thread so much love

So happy for you I hope it all goes smoothly. Thanks for the update. I too have had a miscarriage. After some stabbing pains and failing to conceive again over a year a scan showed I have an endometrioma. Can I ask how big was the endometrioma? I am worried as surgery is risky and like you said can cause more issues. Also, why aspirin amd progesterone? Precautionary or did you actually have low progesterone and clotting issues discovered? Thanks a million. I have lost all hope almost after this diagnosis.

@RosyappleA so sorry for your loss and diagnosis, it's all such rubbish isn't it :(

The aspirin and progesterone were precautionary. They are prescribed to anyone who has had 3 miscarriages as a precaution, because of my diagnosis and two miscarriages I was just able to skip the queue and say that I should be treated as a higher risk category (just as you are after 3 MCs).

My cyst was 3cm when last scanned but had grown over a cm in a month so likely bigger now. My understanding is they don't bother with surgery for smaller than 5cm, however the advice i was given was that if I can cope with the pain I should because any ovarian surgery is a risk to my ovarian reserve (and mine is already low).

Do you know what stage endo you have?? My advice is keep trying and keep pushing your drs for fertility support.

@Tor88 Thanks for the info I wasn’t aware of that. I will make sure I have another scan to monitor the growth of this endometrioma as I read they can grow quickly. My fear is that having this already indicates stage 3 endo and indicates that there is a big chance the endo is elsewhere. My other worry is that my likelihood of miscarrying is increased. I will discuss this with the fertility consultant in a few weeks and update. On the plus side I have read plenty of success stories about lap and dye and removal of endometrial tissue in terms of pregnancy though so I have there should that be needed. I had a hycosy done today to check if tubes are open it went okay and they confirmed again the presence of this endometrioma although it was strange as they couldn’t see it contained fluid (blood) but it possibly isn’t big enough yet.

@RosyappleA you're exactly where I was in June when the confirmed my endometrioma and I had to wait for an official diagnosis... You're absolutely right that an endometrioma indicates stage 3 or 4. I ended up being diagnosed with stage 4, it's everywhere, plus the fibroids and polyps. The hope I can offer is that I ended up conceiving this pregnancy the same cycle I found out it was stage 4. Again I was advised not to have any surgery on the endo pre having a baby because it's all means delaying ttc, so the advice for me was very much to plough on...

Are you in London? I could recommend a clinic if helpful... Xxxxx

@Tor88 thanks for the reply. Interesting that you were advised against surgery. I had an appointment today so waited for this before replying. We discussed that as I just had that hycosy I would try the next few months just incase a miracle happens and I am one of the women who conceive the months after it. (I have no hope really of that happening but just need some time to process my emotions). The other option was to have surgery to remove endometrial tissue and then try naturally or proceed to IVF. I am really weighing up the pros and cons and will have to decide in a few months. A big part of me wants to just give up. I can’t seem to justify surgery just for the purposes of ttc and I don’t even know if I can handle IVF. Good luck with the pregnancy hope everything goes well x

@Tor88 I'm so happy for you, congratulations on your pregnancy! I hope it's progressing well and you have a good birth.

i just wanted to add to the good news, for anyone who's suffering with endo and comes across this. I'm 13+4 weeks pregnant.

After a couple of rounds of fertility treatment, we took a break over the xmas holidays and lo and behold, Santa dropped us a surprise. Obviously there's still a long way to go, but so far, everything's looking good (knock-on-wood).

@RlyTryin so happy to hear that you are now pregnant can I ask what fertility treatment did you do

Thanks!
I had injections during luteal phase (gonal f it's called here, low dose), then another injection to aid ovulation (called ovitrelle here) and the progesterone (2x400 per day) for two weeks leading up to menstruation. But like I said, in the end it happened during a cycle where I didn't do any of it...

@RlyTryin Hey, you know the progesterone was it a tablet if it was do you get any side effects with it. Does that generally increase your chance to help you get pregnant.

I am seeing my GP on Friday might speak to him regarding it.

Hi @Tor88 I would be really interested to know which clinic you went to if possible? I'm in London and in a similar position to you - I have a confirmed endometrioma but waiting times are very long for any further diagnosis so am looking whether to go private x

@Missrainbows yes of course it's the gynaecology ultrasound centre on Harley Street. I was recommended them by someone on the Facebook endo chat. It was £450 for a full diagnostic scan. I really recommend it tbh because you can get booked in straight away and find out your diagnosis without surgery, they're one of the only places in the UK that can diagnose the scan..and it means you have the info to get yourself on the right referral route via the NHS, which is what I was in it for!! Good luck, really wishing you all the best with it, such a tough journey:( My diagnosis broke my heart, stage 4 severe endo, fibroids, polyps, cysts, the whole lot, and I was pregnant two weeks later..I know I am extremely lucky, just also know if can help to hear hopeful stories!!

@Tor88 thank you so much for your reply :) congratulations on your pregnancy!