Hi, I've been recommended to see a nurse practitioner so I have got an appointment next week. I'm just wondering if anyone else has seen a nurse specialising in endo before? What should I expect for the appt? Would she carry out any tests/swabs etc?
Thanks
Katie x
I haven't but from reading the NHS new guidelines for severe endo, those ladies requiring surgery on RV or rectovaginal endo, they will now be taken through a questionaire before treatment and monitored after the surgery at set intervals too. Which is a great idea, and hopefully will provide the professionals with the evidence to cater a much better care program for ladies with severe endo issues.
I have no idea what the monitoring involves or what questions are asked, so perhaps you could let us know what happens in your appointment.
All the accredited endo centres are to have a dedicated named endo nurse, so my guess/hope is that he or she will be very useful part of the team working on your case.
She may be required to take a blood test, hospitals always seem to want a donation regardless of the reasons for visiting, but I shouldn't think a swab would not be necessary unless you had any particular cause for concern about an infection.
Much more likely they will weigh you, measure height, take a detailed history of your journey with endo, your symptoms, previous treatments tried, previous surgeries, pregnancies, or plans for pregnancies and so on. Perhaps some questions on family history with endo, or your lifestyle habits, like drinking, smoking and that sort of thing.
Much like the pre-op interviews with gynae staff nurses.
Unless anyone else has specific info on this I wouldn't worry too much. You certainly can refuse any tests that may cause you pain...like a smear or speculum fora swab if you know it hurts and needs pain relief. A good endo nurse would accept that being the case and not force you in to anything you really are not prepared for.
Omg my nurse specialist at Guys hospital is flipping amazing. I have been suffering for 8 years. She steps in and she's like a miracle worker. If it's your first appointment she probably will just run through a questionnaire with you. But if you need urgent care she may swab you or start you on new medicines. It all depends on your symptoms. But I can say honestly that my nurse specialist Claudia Tye has done more for me in 3 months than any doctor has in 8 years. She is a proper genius and really knows her stuff. She has given me my faith back in the medical profession. After 8 years of pain and 3 laps and no improvement I was at the end of my tether. She's changed my opinion wildly and has done things that directly improve my quality of life.
Well my nurse specialist is a specific endometriosis specialist. So she helps me with all aspects of horrible endo symptoms. The symptom that cracks my head the most though is the painful sex and she's been brilliant with me and this. She's started me on HRT to try and make sex less painful. She also was so supportive when I had a bully consultant who threatened to give me a colostomy bag during my last lap. Also reviewed all my meds to see if they were working correctly, referred me to the pain clinic for ongoing pelvic pain and reffered me to a phycho sexual councellor for me and my husband as we haven't been able to have penetrative sex since feb. They have lots more time per patient and I have found them a huge help. Please keep in touch and let me know how you get on. Are you going to an endo clinic? X
Thanks for the replies ladies. I will be sure to keep you posted on what she says - I'm going back to the drs tomorrow to try and be referred to a different gynae, my last appt she basically said my endo was too mild to be causing that much pain, and it was IBS causing the pain. So frustrating. Will be interesting to see what the nurse's view is x
The peculiar fact about endo is that a small amount of endo that looks 'mild' visually can cause dreadful pain whereas extensive 'severe' endo might not be so painful. Plus, everyone is different. There are no hard and fast rules with endo. That gynae is misinformed.
Good luck with your appointment.
Cancelled appointment 
Does anyone know a good acupuncture practitioner?
Zoladex nightmare & appointment hell!
