Natural conception with endometriosis before surgery

[SophieBearsMama]

Hi ladies 👋😊

Hubby and I have been TTC naturally for 2 years, but have never had a positive pregnancy test in that time ☹️ I had deep pelvic endometriosis found last June via an MRI so it's not known where else it is until I have excision surgery. I'm still waiting on MDT call which they said will take about a year and then after that, it's most likely another 2 year wait for surgery. I'm 36 now.

Since my diagnosis, I've changed my diet quite drastically and my cycle seems to be giving me all the right signs, such as EWCM (which lasts for about a week before and then a few days after ovulation), not as painful ovulation cramps, no more spotting for days beforehand, no more clots and 31-35 day cycles. Although I do fear my period is quite short these days as I only have my bleed for 1-2 days and I possibly have a shorter luteal phase too 😕

I've started tracking my CM and BBT for the past 3 months and am still getting to know the BBT thing!

I recently had a call from a so called fertility specialist clinic, which turned out to be an IVF doctor and they told me this was my only option (no surprise there!). Also, that having endo surgery would compromise my fertility so I would have to choose between the two....which I know is rubbish and surgery would actually increase my chances. (Which is why I was referred for surgery in the first place 🤦‍♀️)

I've had a hormonal blood test which came back fine and then a vaginal swab, which came back with thrush and was treated. Apart from that, I've had no other tests such as ultrasound or checking my tubes. My husband is having another semen analysis as his last one came back inconclusive.

I'm looking into going private and having more investigative testing done for both of us to check our microbiome and for infections and possibly complimentary treatment such as reflexology and acupuncture. I feel like they haven't really done a deep dive into it tbh. Just the bare minimum and then said IVF.

Ideally I would like to conceive before I'm 40 and surgery is a long wait 😫 So I would like to hear your positive stories of conceiving successfully with endometriosis and before/without having had surgery first and whether or not you had other tests and treatments which helped with this. Any advice/tips?

I'm at the beginning of another TTW and am always hopeful that this could be our month 🌈🤰👼

Sorry for the long post and thanks for sticking to the end if you have! 💖

It took me 10 months to conceive when I was 34. I then had a missed miscarriage. After that it took 3 months to convieve my son. His birth ended up with an emergency cs and afterwards the surgeon advised that I had extensive endometriosis. I had no clue. It likely explains how long it took to conceive initially. I guess my story shows that it is possible without intervention.

After an ‘unexplained infertility’ diagnosis and unsuccessful IVF (both my and DH’s blood/semen tests, scans etc came back as ‘textbook’) I had an exploratory laparoscopy which revealed stage 4 deep infiltrating endometriosis. Following an MRI which revealed pretty much all of my pelvic organs to be tethered together, I had excision surgery in August 2023. My surgeon said that IVF would never have worked because of all the inflammation present, which was caused by the endo.

As part of the treatment I had been put into medical menopause (Prostap) before my operation; my periods returned in the autumn. We were planning an embryo transfer the following spring but to our great surprise I got pregnant naturally on just the second cycle of trying - aged the wrong side of 40!

If you search my username you’ll be able to find my full ‘journey’ - best of luck! ☺️

My top tip is to find the very best surgeon - look up who heads your local BSGE centre and try to get on their operating list.

@Kate489 I'm so sorry 😞 my SIL had a missed miscarriage 💔 am so pleased for you that you got your rainbow baby afterwards though 🥰🌈 I know C section is hard too as my SIL had one after her successful pregnancy too. Takes a long time to recover and she also got an infection. Thank you ❤️ it gives me some hope 🙏

I should have said in my first message by the way, that I really feel for you. It's shit - endo is shit, the NHS waiting lists are shit, the way you're simply fast tracked to 'IVF as the solution' is shit. So if I met you in real life I'd give you a really big hug.

My NHS conspiracy theory is that they take years to diagnose women on purpose, and don't actually investigate infertility properly (i.e. by offering a laparoscopy), because if they did, and they uncovered the scale and sheer amount of women who have endo, it would bankrupt the NHS by giving them all excision surgery. I barely had symptoms and only found out I had it by chance.

Rather than paying for private IVF, could you pay for private excision? If so, please don't go to a 'generalist' gynae - find one who really knows their stuff about DIE. Wishing you tons of luck

@Decaffe had you had the surgery and then conceived naturally? Yes, I suspect doing IVF without surgery would be a wasted try which is why I'm not overly enthusiastic about it beforehand. But "specialist" telling me I'd have to choose between IVF or endo surgery 🤦‍♀️ Oh yes...I definitely won't be letting anyone touch me but a specialist. I've heard too many stories about women having surgery either to be told there's nothing there, or having ablation, not realising they aren't a specialist. I feel so sad and frustrated for those women. I'm hoping it would be less than 2 years to wait, but I doubt it tbh. Hopefully I can either get onto my husband's health insurance, or have some money come in (maybe win the lottery 😂) and pay privately. Thanks so much for your story. Glad you got your baby in the end 🥰 Why did nobody tell us it could be so hard 😅 I'll definitely take a look at your posts 😊

@Decaffe aww thank you so much ❤️ so sweet of you to say those things 🥰 tbh, I'd say my symptoms are mild in comparison to a lot of women, but I still knew something wasn't right. Because my periods aren't heavy, I didn't take days off work because of the pain (I'm self employed so had little choice with customers relying on me 🤷‍♀️) and I'm also within the normal cycle range, they completely fobbed me off and said it definitely isn't endo. They did eventually refer me to a hospital, where I was told again, "I doubt very much that it's endometriosis, but I shall refer you for an MRI, just to ease your mind". And then they found it...luckily. Or I'd still be looking for answers 🤦‍♀️ I totally agree with you on that theory! I don't understand why they don't just rule it out first. We know our bodies and we know when something isn't right! The cost of surgery is around £8,000, so I'm on the NHS waiting list unless some money appears from somewhere. We probably won't be able to afford another round of IVF after the NHS round either. But not sure how long the wait for that anyway. I just hope it happens naturally 🙏