Concerned mum

[Jo15]

Hi, I'm probably not a usual user but I am fraught with worry. My daughter is 28 and has stage 4 endometriosis. She recently had perforated bowel due to investigations which resulted in sepsis. The endometriosis has grown through to her bowel and she now has a stoma. The plan is to remove as much endometriosis as possible and resection the bowel at same time. However she has just been admitted to hospital again with pain and infection. Is this a normal with endrimeteosis?

[JWild]

Hi, I am so sorry to hear about your daughter. My heart goes out to you all. I too had a similar thing, due to late diagnosis the endo had entered my bowel. I had a bowel resection which resulted in a stoma due to infection and neglect by the hospital. I have had my stoma reversed, but have had 15 operations (endo returning, adenomyosis, scar adhesions etc). If there is one thing I could say, it would be research your surgeons, my bowel surgeon has been amazing and I trust him implicitly. Find their names, google them, find what work they specialise in and where they work privately. Most surgeons will have a profile online. Removing endo is a specialism, and you want to make sure that your bowel surgeon can excise the endo properly if it is only him doing it. When I had my bowel resection, I had my bowel surgeon and a gyny surgeon whose specialism was excising endo. The op took nearly 9 hours as I had a bladder resection to.

Also, on a practical note, I would make sure your daughter has a mobile on her at all times. If the nurses are not helping at least she can call family in an emergency. Get her to drink as much as possible, it's hard because the bag will fill quicker. But drink water diluted with squash as it will stay in her system longer than water. It is so important, as she will dehydrate quickly, and keeping hydrated will make her feel better and stronger.

Sorry if I've waffled, but please don't hesitate to contact me if you have any questions, as there is so much the hospital doesn't tell you that I've only learnt with time. Xxx

[Jo15 in reply to JWild]

Hi, thank you so much for your reply. It is so lovely to hear from somebody who knows from experience. Your words seem reflective of so much we have experienced so far. We had problems getting our daughter into hospital in the beginning as the emergency services for whatever reason didn't recognise the seriousness of the situation. It was my husband and I that got her to hospital. If we hadn't I dread to think. We keep our phones on us every second now and don't hesitate to advise her to go straight to a &e. The fact that she is in Newcastle and us in Preston makes matters worse. Just like you they are planning to do both surgeries ar same time with bowel and gyny surgeons. Luckily they have special endometriosis clinic at Newcastle. She is still in hospital with infection at moment but hopefully may push operation forward. It must be terrible to have been through what you have but so wonderful that you are able to help people like me. Thank you again and I will pass on your advice to my daughter xx

[JWild in reply to Jo15]

I hope your daughter recovers from the infection very soon. Please do not hesitate to get in touch if you have any questions. x

[JOSANDY40]

Yes I had a bowel resection when I was 26. The problem is with a stoma they can leak and the healing can be difficult. Also with a autoimmune disease she will not recover as will be prone to be slower to fight infection.

Surgery has moved on since the time when I had mine at the time my op was not available on the NHS.

My thoughts are with you.

x