Me and now my daughter...

[ElocinR]

I am 48 and have had endometriosis since as long as I can remember but was diagnosed when I was in my 20’s. I had an emergency C section for my son 17 years ago. After this the Endo grew into my abdominal wall. They at first thought I had a hernia so re opened the C section, only to find a mass. Biopsy’s sent off and it was Endo. Put on zoladex. Anyway to cut a long story short I ended up having to have my stomach muscles cut away and wire mesh put in. Then a couple of years later my C section cut open again to have the ovaries removed. To cut an even longer story short I then had to have my C section opened up again to do a full hysterectomy. The Endo and cysts had grown into the bowel. I am here years later much much better than I was, but pain is daily. Adhesions and I feel still some Endo. My daughter is 19, she is not quite as bad as I was at her age but I’m sure she has Endo too. We are seeing a consultant next week for her. My heart is breaking thinking what she has ahead of her.

[Lindle]

You sound to have had such a painful journey - regarding you personally are you under a specialist centre in tertiary care and have all options been exhausted since you are in daily pain?

I can't imagine what it must be like to have a daughter as you must dread her developing it as well. Things have (theoretically) moved on though and there is a lot of accessible info to support her in getting care. I suggest you have a really good read of the first chapter of the ESHRE guideline as it gives a detailed account of the symptoms doctors should be looking for. The whole thing is a useful read but is long! Also be very familiar with the NICE guideline that GPs should be following so you can be ahead of them. In particular note that if she ticks just one of the list of symptoms she must be suspected of having endo, she must only be seen by a specialist in secondary care with expertise in diagnosing endo (a special interest) so they must have some specialist training. If she has any evidence of deep endo (beyond stage 2) she must only be seen in a specialist endo centre in tertiary care. In England there is a specific treatment specification and referral pathway.

Be aware that IBS is the most common misdiagnosis for endo when it is a common symptom in itself and if hormonal meds are suggested to control symptoms (as opposed to the disease) think about whether you want to risk symptoms being masked with deeper disease developing rather than having a diagnosis from the start.

If an ultrasound is suggested it must only be done by an expert in gynaecological ultrasound and if it shows nothing it doesn't rule out endo.

I've put links below that I hope will help:

eshre.eu/Guidelines-and-Leg...

nice.org.uk/guidance/ng73/c...

england.nhs.uk/commissionin...

I hope it goes well. xx

[Lilyjack]

Neither my grandma, mum or sister have reached 40 without having a hysterectomy. I am 34 and looks like I’m heading the same way.

Both me and my sister have daughters (hers are teenage so are already showing similar problems to us at their age, but mine is only a baby) all we can do is support and understand.

I was a little disappointed when I found out at 34 weeks (anomaly on scan for low placenta) I was having a girl because I didn’t want her to face what I have so totally understand where your coming from but like I’ve said we know what to look for and we know what helps and the support we would have liked for ourselves.

I think it’s unreal how much we are required to fight for help or treatment even with a diagnosis! Hopefully when my child grows up she will not have it as hard and hopefully they will know more but I’m not going to hold my breath