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Original poster

Just been diagnosed with endometriosis :(

46 replies

hopingforamiracle · 31/12/2014 22:28

I'm 23 and just had a laproscopy which found stage one minimal endo. It was on both ovaries, pelvic wall and womb. I'm terrified of not being able to have children. I always had a gut feeling I would have difficulty having children, my worst fears have been confirmed.

I've done some googling (big mistake) and all I can find is stories about women who struggle to conceive, some need expensive treatments, some try for years before finally getting pregnant.

I really don't want to go through all that :( I've had terrible luck in life and now this is just making me feel hopeless.

OP posts:
saturnvista · 31/12/2014 22:33

Flowers You're panicking unnecessarily. Most stories you're reading will be from women who had much more advanced endometriosis. I've been through it with moderate endometriosis and conceived my beautiful DD about 6 months after treatment. I had a laparoscopy followed by two injections inducing menopause. It wasn't easy, but it worked. Hasn't come back.

Really, don't panic! In one sense, you're lucky to have been diagnosed so early.

rallytog1 · 31/12/2014 22:33

I don't want to give you false hope, but I had a friend with endometriosis who was told she'd never have children. She was on the pill for other reasons and took it religiously. However, after one drunken fumble with her best friend, she was pregnant! She now has three children.

Obviously every person is different but I just wanted to give you some hope that it may not be as bad as you fear. It's always a good idea not to Google these things, as you tend to find the worst case scenario.

Thanks
Aeroflotgirl · 31/12/2014 22:33

Oh no Flowers. I am sure sombody with knowledge will come and give you advice.

winkywinkybumbum · 31/12/2014 22:35

I have endo and a child Smile

tunaandcheesesandwich · 31/12/2014 22:37

I have quite extensive endometriosis which was only diagnosed after I became pregnant! After giving birth I had laser treatment on the endometriosis, and got pregnant a few years later with DS2. So please don't worry too much about it - you often only hear the bad stories on the Internet. Make sure you get it treated and I am sure you will be fine.

kbbeanie · 31/12/2014 22:47

Dont worry hun. Id been having pain my whole life but more severly in the past 6 years. I was admitted to hospital quite a lot and really struggled to move most days. I have a 2 year old ds and was only diagnosed this year after he was born with extensive endometriosis and i had a lap to have it removed then but its back again just 5 months later the awful pain. Im ttc again atm and have been for 4 months and i know how u are feeling at times i think it might never happen again because of the endo but then i look at my son and know it can happen and at 23 you are still young im 23 as well. I had a completely normal pregnancy and natural delivery no pain relief required i actually found it quite a walk in the park compared to the usual pain im in which i now take a concoction of strong drugs to ease the pain of.
It can happen and does happen for lots of women . Im on a few endometriosis groups and i see quite a lot of women getting pregnant some it takes longer than others but its not impossible. And now they know what it is they can keep on top of it and when it comes to ttc there will be help available. Ive been told by my consultant to see them after 6 months of unsuccessfully ttc even tho normally they say a year but its because they know there is underlying issues x

Lovethebubbles · 31/12/2014 22:48

I have endo and suffer badly every month. Mine was diagnosed after an emergency laparoscopy when they thought I had an ectopic pregnancy. Turns out it wasn't ectopic but I was having a miscarriage (unrelated to the endo). I was very worried about our chances of conceiving again after my diagnosis but after a few months I fell pregnant again and went on to have a healthy DD. 4 years on and I'm 12 weeks pregnant with my second. It hasn't taken me any longer than the average to fall despite my concerns. I was convinced after 4 years my insides would be so damaged that I wouldn't be able to fall pregnant again.
I think it's understandable for you to worry but try and keep positive because lots of people aren't affected. In fact lots of people have endometriosis but aren't even aware because they haven't had a diagnosis. Sounds like you're in the early stages so hopefully you'll be fine. Are you TTC at the moment?

bigbluestars · 31/12/2014 22:49

Both my mother and sister had extensive endometriosis too, but again it was only discovered after having two healthy children.
My niece who has endometriosis needed help to conceive (IVF) has a baby boy then went on to naturally concieve three other babies.

happygirl87 · 31/12/2014 22:57

Hoping, Flowers for you. What made them do the scan? I have awful period pain- diahorrea, wake up screaming, vomiting etc- but my dr has just said endo is too hard to diagnose, and I need to take pill back to back for 3 months to only have 6 periods per year Sad really worried I might have something wrong, but not sure how to get it progressed.

EddieVeddersfoxymop · 31/12/2014 23:14

I was crippled with endo, but fell pregnant first month of trying. Lost that one, tried again a few months later and again, first month of trying we were successful. Pregancy "cured" me, but 7 years on I've been referred again as I think it's coming back. Was no barrier to having a child though.

cookiemonster100 · 31/12/2014 23:18

I have endo. I didn't fall pg naturally but did 1st time on IVF. Wishing you well, I promise you, endo is not the end of the world x

Allisgood1 · 31/12/2014 23:24

I think you're me but 11 years ago Smile

I now have 3 children who were all conceived on the first try Smile
My endo was also minimal. If it helps you feel better, I know someone who was given a 10% chance of conceiving naturally due to severe endo. She conceived twins naturally.

I was on the pill continuously (no period) for years before stopping to have babies.

Try not to worry.

NobodyLivesHere · 31/12/2014 23:26

I had 3 children with both endometriosis and adenemyosis. Dont give up hope!

FloraPost · 31/12/2014 23:27

I was diagnosed with extensive endo and an ovarian cyst after 3.5yrs unsuccessful ttc. Fell pregnant 2 months after a lap & dye and again two years later first month of trying. Falling pregnant is a common side-effect of a lap and dye, said my consultant.

RedTinsel · 31/12/2014 23:30

Me too. Diagnosed at a similar age to you. It took me a year to conceive but I have 2 DCs.
Honestly it's not as bad as dr Google might suggest.

honeysucklejasmine · 31/12/2014 23:37

HappyGirl your post has made me so angry! Bloody doctors! It is not normal to bre in such pain and they MUST do something about it. It takes on average 8 years to get an endo diagnosis because of GPs refusing to take women seriously.

Change GPs. Keep doing so until you find one who does refer you. If none of the GPs at the surgery do, then kick up a real fuss! Letters! Complaints! Get Endometriosis UK on side to fight your corner. Do not accept "it's normal!"

It fucking isn't! Angry

SunbathingCat · 31/12/2014 23:37

This reply has been deleted

Message withdrawn at poster's request.

LegoClone · 01/01/2015 00:19

I have endo, although don't suffer hugely with it and probably wouldn't have been diagnosed if it wasn't for the large endometrial cyst spotted on an ultrasound when I had a miscarriage.

I've been pregnant 3 times and each time I became pregnant the first month of trying. I have 2 RL friends who also have endo and both have children - neither took longer than 8 months of trying.

Obviously everyone is different and some women with endo do have difficulty conceiving, but as SunbathingCat said - you hear/read more about people with negative experiences than positive because those who manage to get pregnant aren't seeking support or help online.

I hope that it all works out for you.

littlebeps · 01/01/2015 00:34

Please stop googling. I did that and really believed all the horror stories out there. I had stage 4 endo 3 yrs ago which was excised and am now 36 weeks pregnant after ttc for a very short time. I'd recommend the endometriosis SHE trust for positive proactive support. Good luck

Itsgoingtoreindeer · 01/01/2015 00:35

This reply has been deleted

Message withdrawn at poster's request.

adora1985 · 01/01/2015 00:48

One of my friends had endo but no formal diagnosis, and conceived her DS within 6 months of trying. She has since had operations for her endo and been told that if the extent had been known before she'd ttc, they'd have told her that natural conception would have been near impossible in their opinion. Even with that she managed to carry to full term, and conceived within the normal time range.

FabulousFudge · 01/01/2015 00:51

I have endometriosis too. It is a big shock when you're first diagnosed. Having endo does not mean you are infertile or will have difficulty conceiving necessarily.

thegreylady · 01/01/2015 01:01

My ddil was dx with extensive endometriosis and told she was unlikely to conceive. She had 2 dc in 2 years and a third 4 years later after which ds had a vasectomy!
My niece has endometriosis and struggled to conceive but has had successful ivf treatment.
Please don't worry unduly. Good Luck.

DixieNormas · 01/01/2015 03:35

This reply has been deleted

Message withdrawn at poster's request.

my2centsis · 01/01/2015 05:26

Havnt read thread but don't Google you will just give yourself unnecessary fear.

I got diagnosed at 17. Stage 4 endo, had a laporoscopy at 17, then 19. Because it was so severe I was told my chances of having babies would be very slim, my bf (now dh) and I didn't use protection, I got pregnant at 19 had a 9week miscarriage, got pregnant at 20 had a 13week miscarriage leading to a D&C. Got pregnant a few months later, had ds. My endo is quite bad, have to have laparoscopys every 18ish months. I had dd 2years ago, after 7months of ttc. I got a Merina inserted as its ment to stop endo from growing, have had it in 20months now and have just been booked in for another laporoscopy as apparently the Merina isn't working :(.

Point to my story is everyone is different, good luck I'm sure it will be fine:)

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