Please help. Not having children for medical reasons

[ttcgrief]

Posting for traffic. I am mid thirties and with DP for over a decade. For the past six years or so my health has been declining, partially due to endometriosis, partially post viral fatigue and suspected fibromyalgia. I have had surgeries and various treatments that help very little. I also have depression and anxiety in no small part thanks to my physical health.

DP and I have always wanted a child, but by the time we were financially stable, my health was bad. In the past five years we discussed TTC when I 'felt better' which turned out to be never. I function best on the mini pill, sleeping or napping as much as I need. This gives me enough energy to do the housework and work from home as a photographer and editor. If I have to get up at say, 8am and stay up, I will be physically ill by the afternoon (either a migraine and needing sleep, or chills, shakes and diarrhea).

I came off the pill a short while ago to try and conceive because my energy levels were fairly good. I was OK until the first period and ovulation this past week. I bled for 12 days and then got horrendous ovulation pain cramping in my whole body, vomited and had diarrhea and chills. I have been in bed since and unable to eat. I am already underweight. I was able to have sex once before I felt sick, but I never want to feel this bad again after everything I've been through. I know, deep down, I am not well enough to carry or raise a child. I have discussed numerous times with DP and he wants me to do what is best for me but I can tell he is devastated and would love for me to push through. I feel I need to be realistic, I have everything in me to be a good mother but it would be foolish too think I can cope with lack of sleep and everything else that comes with parenting, especially if my body has been through pregnancy.

Has anyone else made a similar decision, and how did you grieve the child you couldn't have? I feel because I am making a choice, it is my fault and I can't bear to see my DP sad. He is kind and caring but I know he is deeply upset.

We have spoken about adoption in the future, if my health improves to an acceptable level, but there's plenty of time to think about that and I know it will never replace what we have lost through my illness.

I would really appreciate guidance on how to heal from this.

Hi OP I am infertile due to chronic health issues, and we ummed and awwed about IVF but went for it in the end. It didn't work out, in fact it was very conclusively a waste of time, and it meant we drew a line under having children and focussed on the future. I'm very glad we did as I've just had a few shitty months health wise. I really wouldn't want to be looking after a child too.

Do you have plenty of disposable cash? If you do and you feel you can get through the pregnancy, you can hire live in help to help you with the baby and you can still enjoy the joyful parts.

Just to give you unmumsnetty hugs. It's not your fault and it's very unfair.

Seeking a referral to your local Clinical Health Psychology service might be worthwhile - not just around this decision and its impact but in terms of your general quality of life.

It's a different service to the generic CBT / counselling GPs usually refer to (IAPT). They have specific expertise in working with people with chronic / life altering health conditions and everything that can mean.

They also don't just issue you with CBT worksheets, they can do really practical work to help you depending on what you need. Including having a meeting with you and your partner together if it is something you want and would be useful, or helping you access other services and support, or finding ways to implement practical changes. It would be guided by your needs, not just giving you a worksheet telling you to think positively.

You sound like you're suffering so much. You deserve all the help and support that's available. You don't deserve this and it's not your fault.

I have ME and fibro and 2 kids if I can help? Feel free to pm

This is close to home for me. I'm in a similar position but I decided to go ahead and get pregnant after a serious conversation with my husband, who knows I will need extra help. The reason we have gone ahead is because this is a recent (ish) thing i.e. last couple of years and I have a lot of hope that I can improve my situation. Plus I don't have a diagnosis, more of a "we can't be sure so we'll call it stress and anxiety"

It is not ideal being on new medication while pregnant and I am obviously worried about how I'll cope, but went ahead on the agreement that DH would have to seriously pull his weight. Plus my mum is retiring so she can be with me more often too.

Is there really no hope for your health to improve? Could you recruit extra help for the first couple of years which are likely to be tough before nursery/school kicks in?

If your own instinct is not to have children, then hard as it is, it is probably the right decision. Nobody should guilt you into making the attempt if this is the decision you come to.

I say the following not to suggest you should have children, but merely to consider: you don't say in your OP whether you're under the care of a BSGE-accredited centre. Have you had top-quality surgery and have you been assessed for the possibility of deep-infiltrating bowel endometriosis? The diarrhoea is a flag. Removal of this type of bowel disease can make a big difference to overall health in my experience, regardless of whether you do or don't make the attempt to have children.

I'm sorry you're in this situation, it's shit.

We couldn't conceive naturally and were told that Ivf was the only option. I have chronic pain and depression and after much soul searching (and honest answers from the infertility boards here) decided that ivf was not right for my body, mind or marriage. I came to the decision with my DH. It has been tough but I'm 44 snow and it's getting much easier as I'm out of the age where babies are everywhere. In fact we are moving house at the moment and I'm looking forward to moving away from the house that we thought we would have a family in. I think for us it has absolutely been for the best, but it did take a while to come to terms with the decision, but I'm glad I put my health and marriage first, because I HAVE those and could have ended up without those and still childless. That's how it now all makes sense to me.

Hello, thank you for all responses. Will try and answer as many points as possible:

My DP is willing and mostly able to take on a large amount of parenting. He works from home fulltime due to the pandemic and this shouldn't change for a long time (there has now been a precedent set for wfh and his commute would otherwise be very long, so he could probably request it indefinitely). However I would feel guilt at just lying in bed recovering while he tried to juggle childcare and working.
My mother could come and stay to help, but she is in her sixties and not in great health herself, she would insist on helping but would have to live here for a while and it's not ideal.
My income is only from selling photographic prints, DP earns the real salary and we have a mortgage. I'm doubtful that we could afford extra help. A cleaner might be doable, a couple of times a month.

As for my health - I am underweight and have been for a long time, I dropped a couple more pounds recently due to my lack of appetite. I am 5'3" and weigh just over six stone. I am gradually working on this but it's difficult. I usually try and take gentle exercise but at the moment I'm trying to conserve calories.
I have had two laparoscopies to remove endometriosis. I take standard painkillers, I used to take the combined pill but stopped due to migraines, I have been taking the mini pill since. I am taking citalopram for my anxiety and depression.
For clarity - my fatigue is suspected chronic fatigue syndrome brought on by a virus some years ago.

Re not being keen on a baby: I am very keen on the idea but just aware of the realities. I am broody and would dearly love a child, but I imagine moments with a child (reading stories, holding hands) that are fleeting, and understand that these moments are not the full picture. So I am just trying to be rational. I am also scared that pregnancy will make my health worsen and I'll be fully bedbound. Plus my period/ovulation this month have frightened me as I remembered how bad it can get - I don't know if I can face this over and over again while TTC.

I have spoken to a number of doctors about this and they all, rather unhelpfully, have said that endometriosis usually eases up in pregnancy and given my age, if I want a child I should just go ahead and try.

Thank you so much for all the advice, I will look into counselling and this is an ongoing discussion with my DP - he instigated a discussion himself earlier about adoption and asked me some questions as I've read a little more than him. So he is actively listening and exploring options, but we won't rush into anything. At the moment I may go back onto the pill to help my symptoms, but I will keep taking my folic acid just in case I've become pregnant from having sex around ovulation (it's likely not, but you never know - if that happens we will see how we feel). I am grateful for the experiences everyone has shared here, thank you for giving me points of reference. My DP came to sit with me on his late lunch hour and we watched some TV and laughed at some videos I found online so things are a bit calmer even though we had a bit of a cry this morning.

Can I ask, OP, what method was used in the laparoscopies - excision, or laser ablation?

I was infertile and looked into IVF but our chances were less than 20% and we didn’t go ahead. We did eventually adopt a few years ago and it is the best thing we ever did.
You say adoption would never be the same? Why do you feel that?
You would however go through a number of meetings and assessments to adopt and it could be unlikely if your health conditions are too severe.
I am sorry if that sounds harsh but the SW look into everything in the interests of the child.

Hi, I had endometriosis removed twice by an excision specialist. There was never a lot of endo but he told me that has no bearing on the amount of pain, however he has also said he isn't sure what more he can do for me (a lot of my pain comes from the scar tissue from surgery!)

Re adoption. I mostly mean it's not the same as bringing home your newborn and bonding with them in that sense. I could see myself raising an adopted child however I am aware that those looking for families are usually older and often come with many challenges such as SEN, trauma, FAS etc. I would have to consider how much of these challenges we could manage (obviously I'm aware that a birth child could also have disability or SEN for example, it is just less likely statistically I suppose). I would definitely work on my health and coping mechanisms before thinking about applying to adopt.

People are really skimming over the toll that pregnancy and birth can take on your body. It's not just about coping with a baby once it's here (which is hard enough) It can be bloody hard even when a woman is in excellent health. You get through the pregnancy and the baby has to come out - women in perfect health suffer permanent injuries from a vaginal birth. CS is a major operation. Let alone the toll having a baby can have on your mental health with all your existing problems. If your health is as good as its ever going to get now, then i don't think it's worth jeopardising your health for the next 40-60 years. But it's easy for me to say, I've never been in your position. Just don't underestimate how physically hard it can be to carry a baby. Then to run after a toddler, and a preschooler on the go from 6am every day.

Re adoption - I think you would be surprised. Some people take the foster to adopt route and get to take home babies a few days home. Mine were both under 2 when we brought them home together. It can take awhile to bond but for me and my husband it was pretty quick and we love them more than anything in the world.
FASD is a chance you take but ours were classed as likely to develop it ( you cannot normally diagnose till age 6) but are now thriving 4.5 years after being with us.
I knew I would struggle with pregnancy and adoption has changed my life for the better.
Work on your health and do some research and it could be a potential route for you in the future.
Take care

I’d just like to add something about BMI. I have a low BMI too, although the not as low as yours. I’m the same height but 7 3/4 stone. I was under consultant care as having a low BMI is a risk factor for having a baby who stops growing. I was quite dismissive of this as all my family are light like me. But it ended up that I did have a baby who stopped growing and had to be born early. He only weighed just over 3lb. So that’s worth considering too. I had no idea about all that before I got pregnant and got weighed at my first meeting

Might it be worth getting a second opinion from another surgeon in case there's something can be done about the pain, separately from the baby issue?

I am facing a similar situation. For me, it's a combination of chronic, fairly low-level physical and mental health problems. I have joint hypermobility syndrome and degenerative disc disease which causes a lot of pain and fatigue. I take quite a lot of painkillers and couldn't face stopping them for pregnancy. Also I think I would be beyond wrecked looking after a small baby or child. I could do it if I sacrified other things, but I don't want to.

I think if you had a lot of spare cash you could just throw money at the problem by hiring maternity nurses, nannies etc. but if you have a normal-ish income that's not really possible. It's all very well saying DP could do the bulk of the childcare, but half of all marriages end in divorce (the rate is higher for unmarried couples) and in that situation women generally get left holding the baby. Not saying that that would happen to you, but it's a risk for anyone.

It is hard, because like you I get broody thoughts and enjoy spending time with children but I just think the reality would be too hard.

There is a definite tendency for people to believe that a baby is always a good thing and any problems will fall by the wayside, but you can tell from a quick look on here that most problems are made worse by having children, not better.

Hi
I'm another endo sufferer.
From what you're saying, you've had laps and then been reliant on the mini pill, so I'd hazard a guess that all this has done is kept a lid on it but not reduced the endo and possibly allowed the endo to stil spread.
I didn't ttc until my endo was as well under control as could be before I started. In your scenario, I'd wonder whether a 3 or 6 months treatment using something like zoladex could actually be the way forward. Yes it's not great for everyone, but this changed my life, it gave me no mood swings, no pain, no horroifc bleeds, no ovulation pains etc. It also meant my body was then able to get pregnant and carry my baby successfully , something that over a decade before I was told would be impossible.

I have underactive thyroid, CFS, depression, hip problems. I know my body, which is already a bit of a wreck, would be destroyed by being pregnant, that is if I could carry to term.

I have never been someone who desperately wants kids, so it's easier for me, although I do feel a bit sad about it sometimes.

I am so glad that there are thoughtful people who think like this. At the end of the day, a baby and children in general demand every waking hour of the day, sometimes at night too. Personal, quiet space and restful sleep can go out of the window for months and years at a time.

There are often personality clashes and if you are not up to the job, a child may resent you and your illness if they are not able to do what their friends do. You would no longer be able to put yourself or your relationship first, your child would literally take over like a little Emperor whose needs and demands must be met or else!

I think so many parents are not ideal for this role as they may also have had poor role models in their lives.

It's so challenging and exhausting, you would need the best mental and physical health to cope, and even then it's hard enough, especially if you have any issues from your history.

If your partner has been brought up differently it can throw up a multitude of conflict.

It's also worth looking at the SEN boards to glimpse what life for a non neural typical child rearing parent is like.

If your health means you cannot devote all your emotional and physical energy to a child then it's the wisest decision not to go down that route, however much you might like the idea.

If you try something like Zoladex -a GnRH agonist or hormone blocker - be sure that you're aware of the potential downsides. It can work for some people, as @MotherExtraordinaire says. But it's worth being aware of the ongoing debate on their use. So far as I'm aware, the current state of evidence is as follows:

• they can cause a significant reduction in pain while you are on them, but this is only the case if your pain is caused by active endometriosis. It's unlikely to work if the pain is caused by scar tissue.
• a recent meta-review showed, I think, that these drugs are only really effective for the duration of the treatment - there is no significant long-term protective effect of using them after the course of treatment stops. So, you stop and your symptoms can come back fairly quickly. This is why they are often regarded as less good than good-quality excision, which gives better long-term results according to studies. (can't remember the ref for the meta study).
• side-effects are significant for a proportion of women
• it is known that there are some potential serious long-term effects, i.e. bone density loss. So the treatment course is limited to 6 months or so for this reason.
• you cannot get pregnant straight away after stopping them - you have to wait several months for your system to restart again.
• in a small proportion of cases, your system doesn't restart but stays permanently in menopause. The risk of this is low but if the reason for taking the drug is becuase of a planned pregnancy later, it's worth bearing in mind.

The point about the scar tissue versus active disease is the reason why it might be worth getting a second opinion. If your current surgeon is correct, GnRH analogues are unlikely to help you anyway. If your surgeon is incorrect and you actually have, say, deep infiltrating bowel disease, the evidence currently suggests surgical treatment gives better long term results than GnRHA treatment anyway.

Hope this makes sense.

Also, I forgot to mention - in patients who have severe deep infiltrating disease with large nodules, these can remain active even throughout a course of treatment with GnRHAs, as far as I'm aware - they manufacture their own hormones and can self-fuel even while the rest of your hormonal system is shut down. This means it's not a good option for anyone with this type of disease - you can get all the downsides and very little benefit.

Op I understand how you are feeling. My situation is similar, different medical conditions but the same heartbreaking conclusion. I can relate so well to the desperately well meant questions and suggestions. People in general like to able to 'fix' a problem by finding a solution. I do it myself. It therefore makes people feel uncomfortable when there isn't a prefect fix.
I'm still coming to terms with the reality of never being a mother. It was all I ever wanted. It's not fair but very little in life is. I know it was the right decision the though and by making it I've been freed from the sense of panic that time is running out that has plagued me since my 20s. (I'm single so added pressure of finding the right man.)

I hope you and your husband can move forward together and that your quality of life improves.