My daughter has Endo, I am gutted

I had a hysterectomy in July this year. I thought that maybe it was the beginning to the end. My 15yr old daughter has been in so much pain with her periods, I thought it was her body getting used to it all, but her periods have just got worse and worse, she is afraid to go to the toilet!! I took her to the doctors, who confirmed my suspicions. It is likely to be Endo!! I have suffered for years, and after begging to a gynecologist he agreed to a hysterectomy. My elder sister also suffers with endo. So the family history is strong enough to say that it is endo. I hate this illness, she is so young to have to deal with this amount of pain. she is to try painkillers for a while, and see how they go, if they do not help, she will need to go on the pill. I feel so bad, and selfish, that I have given this to her. I don't know what to do for the best.

9 Replies

  • For her the best bet is to avoid the need for the pain killers and monthly mess, and get her on to BC pills or Mirena Coil right away. It is far better for her that she stops having her periods for as long as she can and tries to preserve her fertility as long as she can.

    not having her periods will give her the freedom to actually get on with everything else she is facing at that age without all the extra stresses of having endo.

    Each period bleed from the uterus has the chance of backflow of that menstrual blood and lining cells up the fallopian tubes (possibly blocking or scarring them) and then in to the tummy. While it is not proven that all endo is a result of backflow, it is certainly a known factor in the blocking of tubes and resulting infertility. Although there are other ways endo can migrate too which are just as likely to be a problem.

    Therefore stopping her having periods is certainly the very best thing for her at this time of her life and education. Without hesitation I would have my nieces put on tablets or mirena to stop their monthly agony if they too turn out to be likely endo vitims. even without having a diagnostic lap to prove it at that point in time.

    My horrific period pains started when my periods started aged 13, and I think quite a sizeable number of us have had endo warning signs from the very beginning of menstruating.

    How much better my life would have been had i had the option of the mirena or pill from the beginning.

    How many exams I should have taken that I ended up missing either because i was in too much pain on the day of the exam or felt i had fallen so far behind because of time off for pain. Mirena was not invented back then, but had it been, and had i had it put in then, I can only imagine how much easier everything at that time would have been. Education, Work, Social Life, Sports... just about every important element of my life in my teens and twenties whould have been so much better had i not been encumbered with painful periods.

    There is a super booklet online from the Australians specifically written for teenage girls and it is worth passing on to your daughter to read. It is free. you can print it off if you have a printer, or just save it.

    The website address is:

    Read through it yourself then pass it on to her. it should answer many of her questions and might make you and her feel a bit better about what lies ahead.

    She is very young and medicine can advance in ways we never imagined in quite a short time frame, so her chances of being stuck with endo for decades are not nearly as likely as it was for us when we were her age. In that respect she is lucky, but it is still going to be a shock to the system to be told that your daughter has endo. I had a nearly 30 year wait to be given my endo diagnosis, oh how i wish i had known at 15.

    It isn't great news on the one hand, but it is surely so much better to be on the right road to treatments as soon as possible, rather than end up with an endo disaster zone inside because no Docs took her pains seriously.

    And you did not give her endo, it is not contagious, she may have had endo cells stuck in the wrong place inside her body since development stage in the womb, but that doesn't mean she caught it from you, it simply means at some point in her development as a foetus the cells, her cells, were misplaced elsewhere. why that happens to 20% of women and not the other 80% none of us know. it might be chemicals you the mother were exposed to, it could be sheer bad luck, it could be a developmental fault for any number of possible reasons but not one of them is anything you did wrong to give her endo. So please stop feeling guilty about it. Your daughter is so lucky to have a mum that has actually been through this the very hard way and can recognise her symptoms and sympathise with her from the start, and be an advocate for her, pushing for the most appropriate treatments while she is too young to be battling the health service herself.

    In many ways your daughter is very fortunate to have a special mum like you. She will appreciate that in years to come, more and more, and have a better appreciation of what you yourself have been through too. Don't be hard on yourself.

    Do you blame your own mum for your endo? Whether she had it or not?

    I certainly don't blame my mother for my catalogue of internal organs that were deformed as well a my endo, all of which would have been there from the very early weeks of my creation. She caught malaria while pregnant with me at 10 weeks. She didn't deliberately get ill and cause a hiccup in my development that left me with deformed or misplaced kidneys, bladder, uterus, gall bladder, and liver.

    As well as the endo.

    I have never blamed her for that, nor have i blamed her for not knowing about my internal issues till I was an adult. how could she possibly have known much less done anything about most of them.

    The doctors treating me over the years didn't know till each organ has had its own issues one by one, and when looked at one by one the deformities inside became apparant. There is no way to know from looking at me from the outside, what a pickle there is inside.

    It is just bad luck for some of us, and we just have to do our level best to cope as best we can and use whatever methods are available to make our quality of day to day life easier while trying not to compromise our long term good health in other ways.

    Have a cyber hug from me and stop being so hard on yourself. Your daughter is very fortunate to have an experienced mum who will empathise with what she is facing and genuinely do what is in her best interests.

  • Don't feel guilty for your own genes, my body is MESSED UP, I also have learning disorders, you know what I fear? not the fact that I will pass any of these flaws on, but the fact that If I have Endo (being tested) then I might in fact be infertile... You have a daughter, a blessing, the light of your world.. sure you feel incredibly guilty....but remember you have not had it so easy yourself, you had to go through it too. I think she is incredibly lucky that the doctor has diagnosed her early, you know I would go to the doctor about my tiredness and heavy periods, you know what happened every time? They did a stupid blood test for anemia, and every time my iron level turned out fine. I have suffered pain for years during my cycle, and it's only that I've done my own research that I've found out what I could have and a new doctor is now testing me, I am 21 now. Be thankful that you can take away her pain, remember for both of you to live a very healthy life. x

  • Hiya

    Unfortunately there is a lot of evidence that endo is a hereditory condition- my Mum has it and had a hysterectomy at 25. I started with symptoms at 11 as my periods started, and was on the pill by 12. With the NHS being as it is it took many tests and misdiagnoses but I finally got diagnosed 17 years later at 28. I am almost 30 now and haven't yet had children but I won't hesitate to do so just because there is a chance I could give my daughter endo. You are not selfish, you sound like a wonderful mother! If we all thought about what we could potentially pass onto our children no-one would have kids!

    I agree about stopping her periods if possible asap- whether that be running the pill back to back or the mirena coil.. The mirena coil lasts for 5 years, then can be replaced. Doctors traditionally didn't give it to women who hadn't had children but this is no longer the case and if someone tells you that it is incorrect. I have one and it is brilliant! (and I have never had kids). I only wish they had offered me one when I was a teenager. The insertion process is unpleasant but it only lasts a few minutes and is nothing compared to all the pain & discomfort associated with endo.

  • Thank you. I think that we will try the pill with her first, as I really don't want her to go through insertion of the coil just yet, I don't think that she will cope with it very well. I remember the pain well from it.

    Both me and my sister have endo, we have no idea if it was anywhere else in the family.

  • Hi

    Just thought I would say hi. My mum really beat herself up about me having endo and completely blamed herself, she felt so guilty, as did my gran. But she has slowly realised that its no more her fault than it was her mums fault for her having endo. In fact, being a mum that has first hand experience means that you can really help your daughter, you're in the best position to really relate to her and provide her with the best support possible. None of us would ever wish endo on anyone so I can completely understand how gutted and upset it is to find out that you daughter is now facing it as well, but honestly, I would have been lost without the real and first hand support of my mum and dad and I'm nearly 30! I spent my entire childhood very well aware of my mums struggles with endo and adhesions etc and often felt like the local gynae ward was my second home! The most upsetting thing for me is looking in the mirror when the pain is at its worst and seeing the same look on my face as my mum had on her face for years, but knowing that I can phone my mum for a chat and know that she will 100% understand what I'm going through is the best support I could every wish for and is a massive help.

    As others have said the pill may be a good step to take, I went on the pill at 15 and it calmed things down for me and managed to get through school, uni and qualify as a solicitor before I started to suffer badly and it delayed surgery and nasty drugs for me for years. x

  • Please dont feel guilty. I had PCOS and Endo from the age of 17 and have suffered in varying degrees until now. Age 46 going in for another Lap. I didn't get it from my mum. I just got it. I dont know of any other family members who have it and I have a large family.

    Just be there for her as I know you will like my mum was there for me.

    It's not your fault.

    Best wishes for your daughter.

    I would also look into a gluten free diet. I wish some one had told me to be gluten free years ago. It is helping me now. X

  • Oh bless you and your daughter. Coincidentally, I'll be having a hysterectomy this side of Christmas and my 15 year old daughter is having terrible trouble also. Her pain was so bad last month that she fainted in the bathroom, she woke up on the floor. Given that they'd suspected appendicitis 3 months ago I figured I couldn't waste time taking her to the doctors so rang 999, just in case. However, we got sent away again, gynae trouble suspected. We followed up with the GP who put her on the pill there and then. However, she's just had her first 'withdrawal bleed' and she's been in dreadful pain again and still very heavy flow. I'm going to leave her another month but then we'll have a review with her GP.

    Part of me feels bad that endo has hereditary traits but when I became pregnant (after 11 months of trying) I'd no idea that I had endo. So, not much I could do about that.

    I hope you your daughter gets on the right track soon x

  • Thank you so much for your reply. We haven't tried the pill yet, I am taking her next week to the docs to discuss her options, it has been suggested that she have the coil, but I am really not sure I want to put her through that just yet. Its so difficult to know what to do for the best. What do you think the next step will be for your daughter?

  • I was put on the pill at 15 for very bad period pains and it worked well for me. I'm hoping it's going to work for my daughter too. I'm worried that it might not as I have no idea what the alternative will be. I'll insist that she is referred to gynae to get as full a picture as possible but I can't think much further than that at the moment, I'm just desperate for the pill to help. I wasn't aware that the coil was used in youngsters, I had mine put in when I had a lap and appendecectomy a couple of years ago. It's not worked for me though . Best wishes to your daughter, I truly hope she finds relief xx

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