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Positive Endo Story (Stage 4)

(11 Posts)
niqnet1 Thu 13-Apr-17 14:38:05

Always promised that if I managed to have children that I would post on here as you can never find positive endo stories online.

Suffered for years with terrible period pains (sweating, pain open bowels, extreme cramping, clots and pain during sex)

Had multiple pelvic exams from 16 onwards and multiple ultrasounds- nothing found or diagnosed

2008 woke up in night (whilst on period) to extreme pain like something had exploded inside me. Underwent Laparotomy to find a chocolate cyst on left ovary had ruptured. Appendectomy also carried out and endometriosis diagnosed. Chocolate cyst also present on right ovary but not removed.

2009 laparoscopy performed to remove right chocolate cyst and endo in multiple places including fallopian tubes. Diagnosed with Stage 4 endo. Told to either get pregnant straight away as my chances to have a baby were very low or have zoladex injections. Wasn't ready for a baby and wasn't prepared to risk zoladex side effects. Chose to take microgynon back to back for 6 months post surgery instead. No pain anymore whilst on pill! Yey.

Came off pill in 2012 as ttc. No pain with periods- double yey!!! Got pregnant after 6 months. Amazing pregnancy (bar pv bleed at 27 weeks) and breastfed for 9 months. No period until baby was 11 months old. Still no pain with periods!! Periods lighter than ever and no pain relief needed. Went back on pill once baby was 13 months old. I have healthy boy who is nearly 4 years old now.

I stayed on the pill until 2015 as wanted ttc again. No pain with periods and no pain relief needed. This time it took 12 months to get pregnant (amazing pregnancy again) now have an 8 month old girl.

So if anyone has been recently diagnosed and i worrying about not being able to have children. There is hope. (smile)

blondebabeuk78 Sat 15-Apr-17 17:31:36

Thank you for sharing, TTC at the moment and every bfn is disheartening but you have given me hope

CinnamonSwirlGirl85 Sat 15-Apr-17 21:22:09

Good on you for coming back and sharing your story. You rarely hear from the people who have success (because they're too busy dealing with pregnancy/children!!!) so it's nice when people come back to share their positive stories x

mrspringle101 Sun 16-Apr-17 11:18:54

Thanks for sharing this! This is so reassuring to hear. I have endo and I'm currently ttc and it is so disheartening every month when the spotting starts.. again!
Always good to read a positive endo story!
Also glad to hear you are no longer in pain too.

niqnet1 Sun 16-Apr-17 11:41:29

I remember looking on the net when we were trying for baby no 1 and every story I read was a sad one. I got in such a state about it all.

I wanted to add that I know personally 4 other women with endo. They have not been as lucky with the pain side of things since their laps but they all have children. So that's 5 women with endo who have had multiple babies!! Just relax and BFP will come x

Chintaria Sun 16-Apr-17 14:45:40

Niqnet, there's another one here too! I too had horrendous periods when I was a teen and in my 20's, and would throw up with the pain. Managed to conceive ds at 31 after 10 months of trying, and then after various problems I diagnosed myself with endo which was then confirmed as stage 4 during a laparoscopy. I had a cyst and the endo removed, then had dd through IVF (unrelated to endo). I've also fallen pregnant many other times (11 to be precise) but have had miscarriages which, when tested, have been nothing to do with the endo.
When I hear of women with endo who are ttc, I always think that they will most likely be successful in having children. It can make it more difficult, yes, but most outcomes I've heard of are positive.

niqnet1 Tue 04-Jul-17 09:40:35

Any luck anyone?

Loosemoose28 Fri 07-Jul-17 09:41:03

Thank you for this.

Fresh after laparoscopy and ablation of endo around ovaries and ligament and TTC as of now. Not period yet since lap though. So may be a very rocky start.

Loosemoose28 Fri 07-Jul-17 09:44:09

My main hope is I know my left tube (right one removed - ectopic years ago) patent and having had a dye test can help a bit. Just need to cycle now l!!!

niqnet1 Fri 07-Jul-17 10:54:58

It will work. There's that actress from the Avengers who got preggo twice with a quarter of an ovary after ovarian cancer so one tube and ovary is good odds!! Hope you aren't too sore after your lap x

Loosemoose28 Fri 07-Jul-17 11:06:20

Have two ovaries just one tube. And I know I ovulate both sides because I feel it. Feel ok today as no longer bloated 😀 suprised how bruised I am. I do feel positive. Poor OH doesn't want to know details etc so just said he will do as told and if IVF is somewhere we need to head then lets do it. Excited yet dreading this AF when she comes.

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