Having a baby with endometriosis AND adenomyosis

[ppeony]

Sorry it’s not a real AIBU. I was hoping for traffic as there’s so little info out there and I’m feeling really sad tonight.

I wondered if anyone on here has any experience of conception/pregnancy with adenomyosis or better yet with the combination of adenomyosis and endometriosis?
The adenomyosis worries me the most and yet has the least information out there. My phone doesn’t even recognise it as a word!

Not necessarily looking to be cheered up—just for some realism.

Thank you

I’ve got both, stage 4 endo and adenomyosis and have for many years. I had a laser laparoscopy before I started TTC to make sure things were as clear as they could be. I’d speak to your gynaecologist before you start trying to see if they can operate beforehand. My son is 11 now. I’ve since had a hysterectomy because of the disease but it was very advanced by that point. Your gynaecologist can help you through it if you can speak to them about your concerns.

I have endometriosis and suspected adenomyosis. I had a laparoscopy at aged 36 which confirmed it as mild. My symptoms were far from mild. Heavy bleeding for years, excruciating cramps and labour style pains.

I was being investigated for it aged 33 with a view to getting pregnant (seeing a specialist at Southmead hospital) They suggested I ‘flush out’ my system. I came off the Pill and a few months later discovered I was pregnant!

Breastfeeding delayed the return of my endo for two years then it came back with a vengeance.

I am on Cerazette which I assume helps but it’s still awful now as I think I’m peri menopausal so erratic, heavy periods, awful fatigue and just feeling fluey,etc. I’m seeing my GP again as the consultant only seems to offer me the mirena coil which I just don’t want…

Hope my story helps reassure you on the fertility front if not the treatment for endometriosis or adenomyosis.

Are you seeing anyone to help?

I had horrific periods all my life, heavy and v frequent. Had no problems conceiving thankfully but had a hysterectomy aged 44 and adenomyosis confirmed. Best thing I ever did (but again I was lucky to have my kids). Best of luck … don’t let the doctors fob you off

Hi, just to say a belated thanks everyone for your messages

Hey I have moderate diffuse adenomyosis and stage 4 endometriosis. (Also have a load of other stuff including pcos and postural tachycardia syndrome.) managed to conceive after 3 years and nearly lost her with big bleeds but she’s 9.. went onto have two more although had two miscarriages. Had my kids before I was diagnosed. Best of luck!

Yes i had both (now had hysterectomy as things got worse) and have had three children. It was a rough road with miscarriages and i almost lost my youngest son.

I have S4 endo, endo in bowels and bladder, adenomyosis AND fibroids. I am currently on Prostap. Have 3DC.

@ppeony
There's a really good support group on Facebook you can join with a wealth of info and knowledge on this. I have endo and got treated for it before going through ivf (which was successful)

www.facebook.com/groups/1148144608538280/?ref=share

I had adenomyosis and other issues that “may make pregnancy/conception difficult” and two kids.

Fingers crossed for you

I have both. Been pregnant twice. One was an accidental pregnancy at 19 that ended in a very early miscarriage. My baby I have now was conceived month 3 of TTC and textbook pregnancy.

However my aunt (who also had both) struggled. She got pregnant naturally but only ever with ectopics. It happened a good few times. Most resolved themselves early on but 2 were serious and she lost both tubes.

I have 2 paternal cousins who have both, one has 4 kids (lost one late-term sadly, but it was nothing to do with endo/adenomyosis) and one has one healthy boy.

I also have friends who have endo (not sure about adeno, but adeno is very common in women with endo but not necessarily diagnosed) who conceive amazingly easily.

This article may be a comfort to you as well:

amp.theguardian.com/commentisfree/2018/dec/03/infertility-is-an-issue-for-some-women-with-endometriosis-but-its-not-the-whole-story

@NotAnotherLurker same here not diagnosed until later when kids were a little older but hysterectomy at 40 , but suspect i had it most of my life as always suffered, although being on the pill seemed to help me
Best speaking to your dra though they should be able to help as different for all of us
Good luck

Yes I have both and managed to conceive with IVF after multiple surgeries. My main problem was my fallopian tubes which I think is often the case.

I had a hysterectomy at 39 for endometriosis, adenomyosis and fibroids. I had always suffered with periods since my teens. I was very very lucky and got pregnant very quickly with my two children and also on a pregnancy I miscarried. I didn't know I had the conditions until afterwards. I was 27, 30 and 31 when I got pregnant. Not sure how old you are but I've often wondered if I would have the kids if I hadn't had them when I did. I wish you the very very best of luck!

Yes also important to remember even those who need treatment often it’s the fallopian tubes which is relatively easily fixed/bypassed by IVF.

I have stage 4 widespread endo, diffuse adeno and PCOS and am currently 34 weeks pregnant. Took 2 months ttc after excision surgery (never get ablation- it always grows back). So lucky to get this far and I appreciate it everyday. I had two excision surgeries, one in December 2020 and another in April 2021. The scar tissue pain during pregnancy has been awful but my endo pains disappeared within days of conceiving. If anyone has any questions, I’m happy to answer 💛

Forgot to add I’m 28

I conceived naturally too, just hoping for a smooth labour with no complications 🤞

I have both.
The adenomyosis causes me great pain but liveable with - I’m now almost 47.
My pregnancy stories are only sad, so I won’t tell you. But I wish you every piece of luck you can have