Concerns about inheritance of endo

[ccsmith]

I’ve struggled with severe endo for sooo long and I hope 🤞🏻🤞🏻🤞🏻🤞🏻 my recent hysterectomy has helped. I have a daughter only 8 I must admit but I am understandably anxious she may inherit it. My mum had it mild and they say I got it from her. I’m really worried my daughter will go through what I did and because I struggled for 7 years to conceive her and then had a ectopic pregnancy because of my adhesions I am concerned.

Does anyone have any advice/experience with there daughters or is it as simple as keeping an eye on her as she starts getting periods! I’m afraid I’m a nurse and obviously think about everything!

[Holleymuzz]

Iv just put a similar post up. I had a hysterectomy 5 weeks ago and yesterday I was on radio bbc live interview to discuss my experience, was on my bowel bladder, kidney tubes, pelvic walls and nerves. I was told because I was left so long and the nature of my surgeries along with the aggressiveness of my disease ( 2x5 hour surgery’s within 14months) I will always have pain and will now live with incontinence, due to nerve damage. For around a year my daughter has been getting nasty ibs symptoms and starting puberty. Today she woke up to her first pair of blood stained nickers. I’m terrified and she is scared and upset. I’m preying she will not have this evil disease. But I have comforted myself and her to the fact that if she does I know what to expect and I know how to demand proper treatment/diagnosis. With all the coverage via the bbc the government are looking into more funding for research and quicker diagnosis. So fingers crossed in a couple of years things will be easier for our girls general x

[ccsmith in reply to Holleymuzz]

Best wishes to your beautiful girl I wonder if the IBS is more puberty but then saying that my daughter has been very IBS/gutty since she was 3! It’s so scary isn’t it and my girl is starting to develop so I know she’s only got a few years left. Let’s hope research will help our girls and well done on going on the radio it’s hard breaking the embarrassment people seam to have around endo. I’m sorry you’ve got such horrid after affects following surgery. I was terrified before my surgery as I had high risk with my bowels but got through surgery ok. However still getting bowel pain which I suppose is better than having widespread endo pains as well.

Best wishes to you and I hope your girl has a better journey into puberty. Xx