Endometriosis UK
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Should i be honest with family and friends and tell them how i realy feel about my endo and my fertility?

I have severe endo and i dont believe i can have children of my own, infact recently i became a registered foster carer. However my family and friends think that i do want to try to have a family and i will go down the road of IVF soon. Ive written an email to send to everyone telling them how i feel but im ot sure whether to send it? Any advice would be appreciated.

This is the email -

"Spending the day with my 3 siblings and their happy young families, left me with hugely mixed feelings. The strongest emotion being pain. Deep, heavy, destroying sadness. Of course I love them all dearly and cherish time spent with them. But witnessing their relationships, the bonds, happiness, laughter, warmth, cuddles, fun, hearing them comparing their little ones growth and milestones, even the challenges they face, underlines how different my life is and will continue to be.

Although ive never been told, as doctors have always desperately avoided the conversation, I am quite certain I will never have children of my own.

To even contemplate conceiving I would have to have my coil removed. Immediately the endometriosis would re-grow, resulting in pain and bleeding along with all the other symptoms of Endometriosis making me unwell, sex would become impossible as the pain and bleeding increased. I would also have to stop taking Nortriptyline which I currently take for pain relief. I can’t bear to think about the levels of pain I would have to endure. Nortriptyline is my life line, currently I take 40mg od, i cant even reduce the dose by 10mg as my pain becomes intolerable.

I had stage 4, severe endometriosis removed and I know how unlikely it is to be able to conceive if you have had endo to that degree. I now have severe adhesions, thus making it virtually impossible for any eggs to be released or find there way down the fallopian tubes, also my fallopian tubes are not in the right position, so the transfer of the egg would not take place. At best an ectopic pregnancy would occur when the egg gets trapped in a blocked tube tube. Chronic inflammation of my uterus and over production of prostaglandins from the endometriosis lesions would cause any implanted egg to be expelled resulting in miscarriage.

Many would suggest IVF as an option. I don’t see it that way. I would have to endure many years of trying to conceive before getting to this point. But I know of or have heard of so many women who’s life’s have been destroyed, ruined by their fixation/obsession to be mothers. Nothing else matters to them apart from conceiving, their whole life become dictated by wanting a child, they often become sad, lonely, depressed and very bitter, unable to fulfill their ultimate need/requirement/dream in life. I never want to be that woman. IVF can be complicated, painful, expensive, demoralizing, depressing and painstaking. Pain takes up enough of my life as it is now, IVF would only intensify it.

For all of the reasons above I do not wish to even to try to conceive, I will not be having children of my own. "

8 Replies


My view is that its always worth being as honest as possible with your family and friends, but I fully appreciate how hard it can be, particularly with things like this. You seem to have really thought everything through so if you are comfortable with your decision I'd say you are as ready as ever to talk to your family about it. Also remember that just by telling your family and friends what your decision is now, doesn't mean that you can't change your mind in the future - that's your perogative, as you never know what will happen.

Hayls x


Hi Annabel

I have so much admiration regarding your need for honesty towards your family, which in my humble opinion is the best option.

I am in a similar position to you in light of attitude towards having a family. I have for the last eight years lived my life as if having children is not on the agenda. I am now 38, and my lifestyle veers ever more towards not having a family. My partner and I have a beautiful 4 month old niece to indulge. This brings on a mixture of emotions on occasion as I sometimes do wonder what it would be like to have a child of my own, but I am also very happy and content with the life I have too. I also make sure I always air these emotions and concerns with my partner, and vice versa, he does with me. This approach is a great help for us two.

I am also honest enough with myself to keep a small window open for a family should the need, circumstances or desire arise. Especially as my partner is 8 years my junior.

Just like you, it would be IVF for my partner and I. I am point blank refusing a hysterectomy. It would not resolve my condition anyhow.

Just to ensure you are better informed on this, in some counties the waiting list is only 6 months if you have stage 4 endo. My specialist has confirmed that if I want a family, I would be granted IVF without all the danger of playing the risk game of creating an endo friendly environment on my lungs, which is where my endo has decided to reside!

So long as you develop really good honest communication and relations with your specialist, you will be pleasantly surprised as to how helpful the specialist will be in granting you the best of care.

Do keep us posted as to how you get on. It is evident that there are a lot of caring and supportive women here, which is a real comfort, whatever the situation.




Hi Annabel - me again!

I also wanted to echo what Catamenialwoman has said. I also have stage 4 endo and have (very recently) made the decision to try for a baby. However, I have only been able to come to my decision with the support of my consultants, who have been really helpful and supportive, and have confirmed the decision on trying for 12 months and then fertility treatment. If I was a few years older, it would have been 6-12months trying before fertility options.

This has been a difficult decision as, like you have said, you have to stop endo treatment whilst trying to conceive and means knowingly putting yourself in the position of taking on pain and worsening endo with only a chance of getting pregnant (and knowing that even if you are lucky enough to get pregnant it could all be worse after pregnancy!). I am also on strong medication for another condition which I would be very ill without but cannot be taken during pregnancy (or trying). I thought this was the biggest thing preventing me from making this decision but by consultants have worked together and worked out a plan and treatment for my medication.

I suppose my point is that if there is any part of you that wants to try for a family (now or in the future) you need to have a brutally honest discussion with your consultant about your position and the reality of what your fertility options and treatment are as you may be surprised with how much they may work to help you.



Hi Annabel,

I agree, for a long time I found it really hard and acted like everything was fine. But it is difficult to deal with I get to the stage where I coo over babies in supermarkets and smile then two seconds later want to cry cause that might never be me, Not only this but when people are out and shout at their gorgeous children I want to go over and shout at them and tell them how much they have and should appreciate it!!

I didn't tell my partner at first as to how much it bothered me. We are both from massive families and it is something we have both wanted for a long time. But when I told him and then the rest of my family it helped so much, they don't necessarily act any differently towards me or hide their newborns from me, but they know how I feel and appreciate what is now going to be my life.

It is scary but I just went and did it, broke down crying, had a glass of wine and then felt a million times better.

I hope that helps.

Heather x


Hi All

Me too I have endo but I dont know what it the stage but the doctor said it is severe. After a laporoscopy for endo cyst and a 6months treatment of zoladex in 2009, I have tried an IVF in 2010 and failed. I did a hyperstimulation and accumulated water in the belly and I think this is one of the reason why the IVF has failed.

It has not been an easy decision to go for the IVF as it cost a lot of money (I took a loan) but I do not have any regret now since I pacify myself by telling that I have tried.

Of course the negative side of doing the IVF is that the endo grow with the medicines and after my IVF I found myself with a cyst again in 2011 and two month later I have a cornual pregnancy (ectopic) and had had to evacuate the baby.

I did a laparotomy to remove a cyst in April 2012 to remove the cyst and after two month the cyst returned and I am now on Zoladex again.

I have excactly the same reaction as heathrec as explained. Not later than yesterday, I broke and cried a lot but as my best fried said things that we cannot control we should accept. Thus talking to people around can be very supportive and helpful

IVF failure is really demoralising and depressive. I felt that the only chance I had failed and moreover I did become bitter and said why it works for others and not for me. It took me time and support from friends and family do help a lot to think positive and get out of the depressive state. It also happen that a colleague hide her baby from me and that hurt a lot and she even refuse to take my gift for the baby thinking it will be ill omen.

Like heathrec said, I often act as if everything is fine and i am happy but deep inside very often i feel very sad and often cry when I am lonely.

I hope that my experience has been of help.


Thank to you all, i realy appreciate your thoughts and comments. I definately want to share my feelings, its just easier said than done! FInding the right moment wont be easy which is why i was going to bottle out and send the email!

Im very grateful to have a very supportive partner who knows exactly how i feel and is always happy to talk about it all.

Even though i feel quite srongly that i dont want to put myself and those close to me through the battle of trying to concieve, i may take your advice and seek further guidance through doctors regarding the steps i would need to take, re my medication etc.

Thanks again for your replies, i will re-read them time to time, for support when i need it most, as you have all said deep inside we are in a really tough position.

Take care for now, i will keep in touch X


Hi Annabel -

Just a quick note to say how impressed I am with your honesty and openness. Your writing comes straight from the heart. If I were a member of your family, I'd want to give you a huge hug. By the way, I think you'll also be an awesome foster parent, if that's the path you want to take.

Like you, I chose not to go for fertility treatment or to make conception a battle, and I'm now 48 and childless. One thing that's tricky about not having children is that other people assume that you'll be very unhappy (and they want to protect you from that), or that your life won't have any meaning. Of course I would have loved to be a mother, and spent years thinking about it. But as that door shut, I found plenty of other things to make life good. If you want children in your life there are plenty of ways to do it without being a biological parent. If you would prefer to do other things, then that's fine too.

I felt very liberated once I was into my forties and people stopped expecting me to have a baby. I hope that finding a good way to communicate with your family/friends will also bring you that peace.

Like lots of other people here, I'll be thinking of you, and I wish you all the best.



Thank you so much. I can only imagine the pain you have been through to get to the point where you are today. WOnderful your at the point of liberation! Enjoy!

Im only 27 so i feel like i have a long journey before i can put all of this to bed. In a way id like to skip the next 10 yrs of my life. I

ts impossible to escape all those questions.... "do you have chiildren?" Would you like to have children?" strangers seem to throw these questions about without a thought of how meaningful and hurtful this can be!

I do feel quite apprehensive about the future, if only my family were aware of how i feel im sure life would be much easier. Il work on letting them all know how i feel........


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