Endometriosis UK
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Recently diagnosed - how do I tell my family?

This is my first post, so please bear with me...

After many year of chronic fatigue, lower back pain, and more recent excruciating pain in my lower right side since coming off the Pill 18 months ago, I have been recently diagnosed with incisional endometriosis in my Caesarian scar. I believe this is not the common form of endo and am blessed to have two children, now aged 17 and 12, but in hindsight it all makes sense now as I think back 20+ years ago to my very irregular periods and difficulty to fall pregnant (although we were not trying, we weren't using anything either and it took a good few months), I'm finding it difficult to get much info on this sort of endo. I've had an MRI scan which identified the lump in my scar tissue, so the doctors aren't planning a laparoscopy nor have they suggested hormone treatment as they don't believe it will help. They have given me the option of having it surgically removed but will only know the true size/depth of it once they open it up!

I am a single mum with no support from the absent father who lives in another country now. My family lives 70 miles away and I have only 1 close friend nearby who has her own problems dealing with a severely disabled child. I do have a wonderful partner of nearly 4 years but we do not live together as he has full custody of his 2 teenage children and faces similar challenges of being a single parent with an absent ex, so my support really is limited.

To cut a long story short, understanding the symptoms now, I believe I've been living with endo for many years but I don't know how to tell my family, especially my children. I am run ragged with 3 jobs, household chores and running the kids around to their activities and, although some help would be fantastic, I don't know where to turn, but also feel that by sharing my recent diagnosis, I will be accepting defeat. As I sit (or rather lie!) writing this, I'm still lying in bed struggling to just get up for the past 3 hours, not out of pain but just the effort and thought of facing the day's challenges. I've lived with chronic fatigue for years, so am used to it and don't want to subconsciously now have a good reason for being too exhausted to do just routine things with the kids, if I tell them what's going on in my body!

Sorry for rambling on, any support/suggestions would be greatly appreciated.


3 Replies

Sorry to hear you're having a tough time.

I'm no expert, but have they told you if the endo is likely to be localised to your cesarean scar, or that you may have other patches inside? If you had symptoms before having your children then it could be you had endo in other areas at that time, which would not have gone away.

Telling your loved ones can be really tough as it's really hard for others to understand pain and fatigue. However if you dont tell them then they are more likely to find it hard to understand how your feeling and why you're behaving certain ways when you have a bad day. I found a really good leaflet thing on the internet about how to support someone with endo, it's easy to understand and my partner found it useful when I showed him. I think I found it on the endometriosis uk website, but if you have trouble finding it I can have a look see for you.

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Having endo removed from the scar should be too big of an ordeal surgically - I should think 3 weeks off work ought to be about average subject to no complications.

I know your kids are not going to be too pleased at skipping their clubs and things - while you are not safe to be driving - but they ought to be able to put up with a short amount of disruption.

Perhaps they have other friends living nearby that they could cadge a lift with. Or share public transport with.

The 1 year old is old enough to be legally allowed to be the carer for the 12 year old.

Even if you are kept in overnight - that shouldn't be a problem and it's high time that something like this crops up to give them the opportunity to take some responsibility for making sure that meals are made, chores get done, you get looked after and so on.

If you want to wait a bit till they have passed their driving test and can take over the transport obligations that might make it easier for you.

Certainly they are both old enough to go shopping for food, do their own washing and ironing and general household duties.

If you had said the kids were 7 and 2, then quite a different story, but 12 and 17 are young adults.

I would be honest with them. Tell them what has happened, that cells from the womb accidentally transplanted to your scar in an old surgery and have formed a mass that needs to be removed with surgery which will require you to be in hospital and then have a few weeks recovering where they cannot be relying on you for catering and transporting.

Have a word with the club leaders and try and find out if any other club staff or other club members' parents live nearby who you could ask to help you with transport for a few weeks till you are safe to be driving again. Failing that they will have to just forfeit a few sessions till you are back on the road again.

Or ask a relative to come down and stay for a week or two as home support while you go through the op and recovery.

Or subject to your finances, advertise for a temporary au-pair to come look after the younger one and live in with you - free food and accommodation in return for some help in the home.

Stock up the freezer in advance of an op with pre-cooked meals that just need heating in a microwave or the oven.

You won't be off your feet for long after this type of op, but you won't have much tummy strength to be doing anything too strenuous either. Will need lots of sleep, and lots of help with regular household tasks which both the 12 and 17 year olds will have to chip in and do their bit.

Worst case scenario - call social services and they can try and arrange temporary foster care for the younger one while you have a week or two recovering. It is something which happens a lot, and they will be quite used to arranging this if it is needed.

They are certainly old enough to be told the truth. My nephews and nieces know all about my endo and chronic fatigue etc. The youngest is 4 the eldest is 13. There are 8 of them and I don't keep it secret. It's part of me and they have to understand it to be in a position to help me when I need it, to make allowances for my exhaustion when I'm knackered without grumbling and whining. They are great and they do understand and I'm sure your kids will too, regardless of whether they are girls or boys. Give them the details, and give them the choice bout how they want to handle it.

Do they want to try and cope without outside help, or do they want to stay with friends or family. or do they want someone to come in to the house and stay to hep out? I bet you'll be surprised how they can rally to the cause if you give the the chance.

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Hi, I'd just like to add, from personal experience, about your children supporting you! I'm in my 40s now, but when I was 17 my mum had to have a hysterectomy, my dad had left and had a new partner and my older brother was (and still is) very self-centred and never thinks about whether or not our mum needs any help! I ended up looking after my mum while she recovered, cooking, shopping, cleaning, driving her around when she felt up to it. In hindsight, I think it helped me appreciate everything she had done for me as a child and made me grow up a bit and become more independent. I also belive it made us closer again, after being a fairly horrible teen! So, I would say you should involve your kids and I bet you'll be surprised at how grown-up and supportive they can be, if you let them.

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