Endometriosis - has anyone had an op .... info needed for my lovely mate!

mybestfriendiscalledstig · 2008-04-10T21:21:51+00:00

My mate's been diagnosed with endometriosis, & really wants to TTC. She's been considering having an OP to scrap things off to try & increase her fertility, at least for a while. Has anyone been through this/any thoughts/guidance?? Having decided to go for it, she's been scared today with talk of scaring. She's mid 30s, so conscious that her window of opportunity isn't getting any bigger....

gigglewitch · 10/04/2008 22:31

I had endo in my early 20's, told I'd never have any children. Was 28 when had treatment which didn't involve surgery but some mad hormone treatment that allegedly convinced my body that I was pg or menopausal, they did this for 8 months in all, then had some scans, endometriosis gone from measurement of thickness of the lining; then they set everything off and bingo - honeymoon baby, conceived straight away. Saw the egg that made him on another scan [how romantic. err,NOT]
Hell but well worth it
Had same treatment for DS2, but had it for longer in "shut down" phase as I took longer to respond. Apparently.
hope all works out for her.

Original poster

mybestfriendiscalledstig · 10/04/2008 22:42

wow - that's interesting gigglewitch, thank you (don't think anyone's talked to her about a hormonal treatment option) - was that on the NHS?
It's incredibly frustrating - she's been going back & forwards to the doctor with agonising periods since she was 14 - & was even hospitalised last year... it's taken this long for a diagnosis

OP posts:

toomanyshoes · 10/04/2008 22:44

I was diagnosed when i was in my early 20's and has a bit of laser via laparoscopy to burn off some of it. Was told to try and conceive asap (best chance for conception apparently in 1st year after op) but wasn't ready for children (hadn't even met my DH then)
Started TTC when I was 30 and got pregnant in six weeks, DD now 3 and had a gorgeous DS 14 weeks ago, again conceived in six weeks!
It is very hard to tell if and how endometriosis will affect your fertility until you start TTC. There seems to be very little rhyme or reason to it and even women with lots of endo deposits can conceive very quickly when it comes down to it. At least your friend has a diagnosis which means she would be fast tracked for fertility treatment if she hadn't conceived within six months (instead of the usual year).
Not worth worrying too much unless she has been actively trying for a while, might be easier than she thinks.
IMO there is a huge lack or research into endo, apalling when it affects so many women. Good luck to your friend

shelleylou · 10/04/2008 22:45

I was diagnosed with endometrisis when i was 18/19. Had a laporoscopy to diagnose and they quartorised it whilst i was still under anesthetic. Had my permission to do so at the time. I then went onto have hormone treatment in the from of Zolodex injections and HRT. I was told several times throughout treatment from various consultants and registrars that I wouldnt be able to have children. A few months after my treatment ended i fell pregnant {completely unexpectedly) with my ds.
HTH your friend and i wish her all the best.

shelleylou · 10/04/2008 22:47

all of that was on the NHS

toomanyshoes · 10/04/2008 22:48

just remembered, i also took the pill back to back for about 2 years (to stop periods, helps stop endo from building up and decreases pain) the other drug treatments available for endo are pretty powerful and have some horrible side effects so decided not to try them.
I had a mirena coil between DD and DS which is also good for relieving the pain and heavy periods

ShinyPinkShoes · 10/04/2008 22:48

Close friend of mine had the op and conceived 4 months later then went on to conceive again without treatment- I am now a very proud Godmother to a 3 year old little boy and 7 month old baby girl

Original poster

mybestfriendiscalledstig · 10/04/2008 22:50

Oh, I'm loving these good news stories
Yes, she's aware that the whole things is a lottery, toomanyshoes. Not sure if that makes it better or harder...it's all so unknown

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shelleylou · 10/04/2008 22:56

It annoys me its so commen 4/10 women suffer with it when i was diagnosed but nobody really knows about it. There are several forms of treatment which her consultant should talk her through contraceptive pill didnt work for me but zoladex every month for 8 months did. It depends on her preferences of what she wants to try and how she gets on with each form of treatment

droopytits · 10/04/2008 23:15

i was diagnosed with endo about 10 years ago - horrendous really because I had been passed around and not taken seriously for about 8 years previous.
I had the pill back to back for 2 years, then I had the hormonal injections that put your body into menopausal state for a few months to try and shrink the endo, and I've also had 4 ops for it - the last was was to remove endo via laser surgery.
Your friend wont really know until she starts ttc - many people have been told that they wont conceive or that it will be really difficult to when they have endo. They could have severe endo and conceive easily naturally, or just mild endo and have problems - it really is a lottery and everyone differs.
Good luck to your friend - its a horrible illness to have and the additional worry about ttc is awful. Hope she gets good news soon.

droopytits · 10/04/2008 23:17

i was diagnosed with endo about 10 years ago - horrendous really because I had been passed around and not taken seriously for about 8 years previous.
I had the pill back to back for 2 years, then I had the hormonal injections that put your body into menopausal state for a few months to try and shrink the endo, and I've also had 4 ops for it - the last was was to remove endo via laser surgery.
Your friend wont really know until she starts ttc - many people have been told that they wont conceive or that it will be really difficult to when they have endo. They could have severe endo and conceive easily naturally, or just mild endo and have problems - it really is a lottery and everyone differs.
Good luck to your friend - its a horrible illness to have and the additional worry about ttc is awful. Hope she gets good news soon.

droopytits · 10/04/2008 23:19

p.s she may find it helpful to look at the national endometriosis society - they have a forum that's gives some good advise from people suffering with it.

Original poster

mybestfriendiscalledstig · 11/04/2008 17:05

Many thanks for that droopytits - will pass that address on.

OP posts:

pollyblue · 12/04/2008 19:11

I was diagnosed with severe (grade 4) endo about 8 years ago. I had a cyst drained at the time of diagnosis and was given danazol to take for 6 months to 'shut down' my system and hopefully cause the endo to die back. Danazol causes some unpleasant side effects and isn't now (I believe) licensed to be given in the first instance, only if other treatments have failed. In 2005 i had a missed miscarriage, had several scans and another big cyst was found which was removed a month later along with my badly-endo-damaged left ovary and tube. The consultant said my insides were a 'bloody mess!' Charming. So much for the danazol. Anyhoo, in 2006 i became pregnant after one month of trying and gave birth to perfectly healthy dd in jan 07. Endo didn't cause any problems during the pregancy (i know some women can get pain as the baby grows and puts pressure on endo patches etc.)
Endo is a bugger because it effects women so differently which is why it can be hard to diagnose. I'd second using the national endo society too, they're a mine of support and info.

Chloe55 · 12/04/2008 19:21

I had key-hole surgery to burn away the lesions caused by endometriosis about 5 years ago now. The most painful part imo was my neck and shoulders after the op which, I believed at the time, was where I had been dropped when I was under GA - apparantly though, the nurse kindly informed me that it was, in fact, due to the wind circulating around your body post-op - not sure what all that's about but if your friend wakes up thinking she has been dropped then hopefully you can reassure her