To All Chronic, Symptomatic, Endometriosis Suffers - Should We Have Children?

[kitty270]

This is a serious topic and i know even the thought of this questions may offend. Yes, I do have a child and i know it may be easier to question this when you already have a family but, I wish I had thought about the negative side to making this decision. Don’t think for one minute i regret having my son because i don’t! but now, experiencing the worst side of this situation, i wish i had thought about it more!

We are often told by consultants that pregnancy eases symptoms and can prolong the return of the disease for years. They paint such a wonderful picture of the possibility that you can have children and that things will be better. Knowing now that there is a downside to this picture and that i am unable to look after my son, i wish I had considered this question more.

To put context to my blog, I have stage 3 endometriosis which is aggressive, widespread, deep and fast growing, affecting organs outside of the reproductive area. After my third surgery i was told that, if i wanted children i should have them now as i may not get another chance, but not once did my consultant say, that i should think seriously about this because, it is also possible that symptoms could return in a month as easily as they could be delayed for years. This was never mentioned!

My son is now 2 years old and since he was born, i have struggled to look after him. Not only did the pain from my endometriosis carry on until i was 7.5 months pregnant but, i also i had to endure the pain of adhesions ripping apart as my uterus grew throughout pregnancy. Even during the birth, my midwife said the pain should be in my back not in my ovaries, as she ordered me an epidural!! After my son was born, the pain returned the very next day and I was put back on high strength pain killers. I could not breastfeed my son. The endometriosis returned in one month and by the time my son was 6 months old, i could no longer care for him. I was bed ridden! Was it fair that i made this decision not thinking about what could happen?

My husband is now my sole carer and acts like a single father to my son. Even now, after a forth surgery, i am still in debilitating, chronic pain, that means that for 26-28 days a month i am bed ridden and my husband is left to hold the fort. My son runs to my husband and kisses him with ease but treats me differently. I suppose he does not see me as his parent, someone who carers for him, gets him up in the morning and puts him to bed at night. Indeed my son often greets me in bed. If he didn’t, i would not see him. Is that fair on my son to only grow up playing and being cared for by one parent? Is it fair on my husband to sacrifice a normal life for this?

Don’t think for one minute i regret having my son, because i don’t! He is amazing and it is a wonderful experience to watch him grow and learn and become a little man, just like his father. However, having now experienced the worst side of this situation, i wish i had thought about the difficulties my family would endure and the sacrifices we would have to make. I just wish that someone had discussed this with me so, that my husband and I could make the decision with our eyes wide open! Instead, I am now bitter and i wish i could blame someone for what has happened.

With the knowledge of my situation, my consultant asked if i wanted a second child and I’m not sure what to say. My heart still says yes because i want my son to have a sibling; i have always wanted a girl and 2 is the perfect number. My head thinks I’m crazy and asks whether it’s fair to make family life even harder than it is now, especially for my husband who takes on the worst of our situation. Yet my consultant keeps telling me that i should try again because, there is no reason to think that what happened the first time, would happen again. Should doctors be giving this advice when they don’t talk about how to cope if the worst happens?

I am writing this at 2.30 in the morning because, i am desperately low and feel guilty for the decisions i have made. I just wanted to put this out there, as it is taboo to think about the worst, when asked if you want children.

[Hidden]

I am so, so sorry you're going through this. Watching your son's life pass you by from your bedroom must be excruciatingly difficult. You need to have a serious discussion with your husband. Does he want more children? Perhaps he doesn't feel that caring for you, and raising your son, as a burden like you feel it is for him.

We have one son, also. He is 2.5. And while I don't have the physical symptoms you do, DH and I have 90% decided to not have another child. We will focus on the greatness we do have, rather than on what we don't have. Knowing my health could very well start to decline in the coming years makes it an easy decision for us. And not having a sibling isn't the worst thing that could happen to a child. I'll bet if your son could decide, he would choose you, and your physical and mental well being, over a sibling.

[kitty270 in reply to Hidden]

Hi, thank you for your reply. I too am starting to come round to the idea of not having another child. Right now I am just too sick. I suppose I'm being selfish. I wanted to be good at being a mum. My career has grinder to a halt now and to say my home life is strained is an understatement. I just wanted to be good at something. Have a purpose! I am still hoping that the next test will have the answer but, if nothing changes, I agree I should not have another child. Instead I will focus on my son, be with my son as much as I can and give all my love, and energy to him. Thanks for your thoughts. It's not something we like to discuss and all of my circle are healthy bods just getting on with life and therefore it's good to share thoughts with someone else who is going through the same. Thank you and take care x

[carrie75]

I'm so sorry to hear how tough this is for you kitty ; I read your post earlier and wondered if there was a pain management service available to you or if this is something your GP / Consultant could look into for you? The reason I ask is having attended an endo support group recently, the lady who runs it spoke about a referral she'd had to the pain management clinic where they hoped they could get an optimal system of pain relief set up for her : this lady has had a hysterectomy but still suffers awful pain. She doesn't want any more surgery but has endo remaining which can't be removed (deep infiltrating endometriosis) and she is now going down this pain management route.

I'm not sure if this might be an option for you but wondered if it might be able to help in any way? Even if they were able to give you some respite/relief in the short term until you've had a chance to think about what to do next, but hopefully they could take everything into account for you.

Take good care X X X X