Desperate Mum

[mandm21]

Hiya, I'm new on here trying to help my 17 year old daughter as gynae consultant just fobs her off!! she's heavy bleeding most days despite being on pill over 3 months now, doubled up with cramps often and vomiting, does anyone have POTS and endo maybe EDS too which she has? really need to get her seen to see if she has endo which I am almost certain she does - any tips on how to get a 2nd gynae opinion would be great, thanks all xx

[Hidden]

If possible you can go straight to a private consultant without a GP referral, though understand that's not possible in all circumstances. Failing that, go back to your GP and explain how unhelpful the consultant has been. Ask for a referral to a BSGE centre, there are loads across the UK, you can search on their website (bsge.org.uk/centre/) for a centre near you. Best of luck xxxx

[luthien]

Hey, I would suggest a private specialist to look at your daughters endo as they're more thourough and have more time to spend with the both of you.

Do either you or your parner (if you have one - not everyone does, so didn't want to assume!) work and have medical insurance through work, or can get it? If so you can add family members (children) to it, this will cover your daughter while in full time education or living at home until the age of 21. That'll help with costs for a start.

Or ask as your local private hospital; they'll usually have a payment plan system.

You can as h_grahh says have a referral to a BSGE center, they're specialists in endo, check out their website.

x

[Missy100]

You have the right to a second opinion, in the UK, even on NHS. When I was continually fobbed off by local gyno, I looked up where the closest endo specialist was to me and asked to be referred there. The wait times were longer than usual (and continue to be for follow up appts), but worth it to me. Alternatively you can ask to be referred to a gynaecology team at a different nearby hospital, but check to make sure it is actually a different team as often the same one will work out of more than one nearby hospital. If you check the hospital website it should list the main staff under the service at that location.

[Doggiedogmom1973]

Hi mandm21,

I couldn't give you better advice than these 2 things to the desperate mom:

-Read this book: "the doctor can see you now", author Tamer Seckin M.D. He's one of the best endometriosis doctors in the world, and he'll explain how the best of the best to care for your daughter. Pass the book onto your family, GP, Dr, Gynecologist, Everyone. And this website is great: drseckin.com/ its very informative and you'll pick up some very good things that will help your daughter. From these resources make a list that will help your daughter.

-If you daughter ever has a laparscopy, please ensure her surgeon is skilled enough to perform 'deep-excision' surgery. This is where they cut out the endometriosis, roots and all. Never go for a surgeon who burns off the endometriosis. Endometriosis is like a tree. Burning off the trunk and the branches, causes EXCRUCIATING pain, for months/years to come after the operation (if had this happen to me!). This is because burning off the endometriosis leaves the roots there, and so not all the endo has been removed and its soo sore. Cutting out the endo, removes everything, the tree and the roots and DEFINITELY leaves you in no pain after the operation. This 'deep-excision surgery' is the 'golden standard' for treating endometriosis.

All the best for your daughter....xoxoxo

[mandm21 in reply to Doggiedogmom1973]

that is so helpful thank you for your reply I will look into getting the book thank you again xx