They told me that the operation took longer than predicted yesterday due to the endometriosis having spread, how they can say its spread when they haven't seen it before is beyond me.. I am desperate to know if it has damaged my fertility, I asked the surgeon but he just told me not to worry! After telling me my uterus is scarred and they have removed the scarring.
Why can't I get straight answers?! Has anyone has this problem?
I think they tell us to have a baby because the longer it's left the harder it is supposed to be to get pregnant, but you have to be in the right situation huh. I spent a long time getting a career and in a way I'm glad I didn't have children because I split with my partner of ten years at 32 so would have been trying to cope in pain and with children because my endo is deep in the pelvis/groin. However I always wanted children just was waiting to get as financially stable as possible. Not meant to be for me obviously
I'm sorry to hear that, I just think it's hard enough having endometriosis without a specialist making you question everything, I am getting married in Oct 2015 I don't want to be forced into having a child before I get married. I have a 5 and a half your old son from a past relationship when I wa 21 since giving birth I've had this endometriosis, so how do they know that I'm not already infertile? How do I get the facts out of them?
Oh congratulations on the coming marriage 
I think as long as you have the correct organs and the hormones there is always a chance you could get pregnant, some people have been told they can't get pregnant then conceive anyway! Basically it's a hard decision to make but will you be more upset if you can't have another child if you leave it later or to be pregnant before......tough decision. What ever you choose will be meant to be I think xx
Thank you it is a tough decision, I agree with you in what will be, will be. Doctors need to do more when it comes to diagnosing endometriosis and fertility but until then, I think it's crossing your fingers and hope. Xx
Because, apparently, medical training for doctors relating to endo is still based on research undertaken 50 years ago and much of that original thinking is now considered flawed/out of date by today's leading lights - but still remains the basis of general medical training. Hence you still get gynaes saying pregnancy or hysterectomy cures endo.
It does feel like a minefield out there of mis-information and consultants with differing degrees of skill and knowledge and treatments. This is something you certainly don't appreciate when you first get referred to the local 'general gynae' by your 'general' practitioner.
The experts believe that Endo (which is generally of the peritoneal cavity) and Adenomysis (endo like growths in the uterine muscle) do not have the same origin and do not necessarily migrate one into the other and so are separate conditions; albeit ladies who have peritoneal endo, do sometimes have adenomyosis also.
The majority of general gynae consultants (who are not necessarily endo experts) still try to treat endo by drugs which only temporarily supresses it (inducing chemical menopause which is not an attractive prospect for a young person - or an older one at that!), or the birth control pill / Mirena which is opposite to menopause and mimics pregnancy (great relief from painful periods tho but does nothing to tackle the endo itself), or recommend a hysterectomy and removal of ovaries, (which will not sort widespread peritoneal endo, only deal with adenomyosis). I am guessing that the drug option maybe useful where ladies are suspected of having adeno and who have not completed their families and need pain control until after they have completed a family. Where endo is peritoneal, it still makes sense to have the endo excised rather than leave it if it is widespread.
GPs tend to refer you to whoever has the title 'Gynae' at the local hospital - but they all have such a wide range of specialisms and some really are 'general' with a broad spectrum of knowledge but not specialising in particular. Best to see someone who has chosen to become an endo expert with up-to-date knowledge and enhanced skills relating to endo. Excision surgery is the most satisfactory way of treating periendo at the current time.
I can also recommend the following books:
Stop Endometriosis and Pelvic Pain by Dr Andrew S Cook (top USA Endo Surgeon Consultant)
100 Questions and Answers about Endometriosis by by Dr David Redwine (retired top US Endo Surgeon Consultant (acknowledged as world leader in the field)
All very best wishes to you . Frances x
Endometriosis specialist help
What does one with endo do when pain killers don't help at all with the pains?
is this all in my head? or do I have endometriosis
My 'specialist' says that if I am having pain whilst having Prostap injection's, then it can't be Endometriosis. She's wrong isnt she?Why do they NOT remove all endo in one lap?
