How do I get a referral to a specialist rather than general gynae?

[LtheWife]

Had a diagnostic lap on Monday, the surgeon confirmed I have endo and I'm now awaiting the follow up appointment. Ideally I'd like to get a referral to someone with a specialist interest in endo as at present I'm under the general menstrual disorders clinic who we're pushing the mirena as a cure all before I'd even been diagnosed. My husband and I hope to start trying for a family in 2014 so I really want to talk through my treatment options.

I know there is a consultant with a specialist interest at my local hospital and have found out it is listed as a Provisional Endometriosis Centre by the BSGE but I've been told previously that I can only be referred to a named clinic (e.g. the menstrual disorders clinic) rather than a named consultant and there is no such thing as an endo clinic at the hospital. So how am I supposed to access the Endometriosis Centre?

[hayls]

Hi

If you are due a follow up appointment with your consultant I would ask him at your appointment to make the referral on to the BSGE endo centre, he will be much better placed to do this than trying to go via your GP and he should be aware that this is recommended practice if you need treatment outside his speciality now that you've been diagnosed. A lot will depend on how severe your endo is though if you are on the nhs, if severe/stage 4 then getting referred on will really open up treatment options particularly surgical options, however if your endo is more minor then you may need to push your current gynae a bit more to refer you on as they may feel (rightly or wrongly) it's not necessary etc in your case. Pain and likely impact on fertility will also be factors in getting refereed on, have they given any indication of the level if your endo? Whether your tubes may be blocked etc???

This is what I did after my diagnostic lap and follow up and have now gone on to have extensive surgery to remove endo and unstick womb, bowel, ovaries etc with a top endo surgeon and colorectal surgeon who are the directors of an BSGE endo centre, I was diagnosed with severe grade 4 endo and had already started prostap injections when I was referred on, it was also private rather than nhs as I have insurance but I know of several women who have been refereed on from/to the same doctors on the nhs, it's just taken a little longer to go through etc. Good luck xxx

[LtheWife in reply to hayls]

Hi hayls, thanks for replying.

I've no idea who I will end up seeing for the follow up. I've never met the consultant who runs the menstrual disorders clinic, I saw a registrar who took a brief history and asked what I wanted him to do about it if I didn't want a mirena (seek a diagnosis and discuss treatment options perhaps?!) and the surgeon who did the diagnostic lap (very lovely but is the clinical director of obstetrics, usually works with high risk pregnancies and isn't normally part of the MD clinic).

Pain levels are very high, I'm having to miss 2-3 days of work each cycle as the worst of the pain completely floors me. Fortunately I work for family at the moment so have a very understanding boss, but that's set to change as the business is being sold in the new year. I haven't been given a stage yet or told where it was found, he just confirmed it was endo whilst I was in recovery, but I'm preparing myself for stage III - IV as they did find a cyst on my left ovary during an ultrasound to rule out fibroids.

I've not had much luck with the NHS previously, but I've got to say this time they've been great. I had my first appointment with my new GP in late August and just 4 months, 3 appointments and 1 lap later have a diagnosis!

[sanchia46]

Do you live in London?

[LtheWife in reply to sanchia46]

I did until 6 months ago, I'm now in Norfolk.

[sanchia46 in reply to LtheWife]

You can self refer to a particular clinic i'll inbox you seperately.