Endo specialist

Hi everyone,

Just wondering if I could get some advice please? :) I had a lap which took 30/45 mins last year which came back negative. I had the mirena put in at the same time and I was told to take the pill back to back. My symptoms (severe pain, painful sex with bleeding after, bleeding randomly throughout the month, hip pain) have come back worse than ever. I went back to my gp who told me it is IBS despite me saying I had no trouble with my bowel. I don't know whether to seek a private second opinion from an endo specialist. Will the NHS carry out recommendations from a private consultant as I can't afford to pay for a laparoscopy privately if they recommended one? I have read that endo can be easily missed and also that the pill can make endo 'invisible'? Not sure if that's true or not!

Any advice would be appreciated :) many thanks

6 Replies

  • Hi, I also was taking the pill back to back and still had the same symptoms as you have described. I was on the pill when I had my laparoscopy and they found 'minimal' endometriosis. Considering I had had these pains and symptoms for 3-4years I thought it would be a lot worse. Maybe you also have minimal endo and they couldn't find it? I was diagnosed with IBS last night and told by my doctor that IBS can flare up endo. I've just found out that you can ask your doc to refer you to any hospital or doctors. So I would ask to be referred. It won't be private but I have also been told (by a family friend that works for bupa) that some doctors treat both private and nhs patients so I don't think it would be worth paying but again I'm not sure how true this is?

  • Hi nibbles thanks for your reply. That's good news about being referred. I don't think the endo clinic I would like to go to accepts nhs referrals but I'm not sure will check with my GP.

  • Is it okay if I message you x

  • Yeah sure x

  • Hiya. You are able to ask for a second opinion on NHS and its a good idea to concentrate on finding an endo specialist centre. The BSGE website has a list of all the accredited and provisional endo centres on it's website bsge.org.uk . Unfortunately going private doesn't guarentee you get anyone who is more experienced in endo - you could easily see a normal gynae who knows nothing more than the gynae you've already seen. Yes you are right hormone therapies like the pill suppress endo so it can make it harder to see if you're taking it at the time of your lap. It also comes down to the skill of your surgeon. If your durgeon isn't skilled enough to identify endo he or she could easily miss it - thats why its so important to have an endo specialist. The other condition you might want to consider is adenomyosis. Its basically endo within the wall of the uterus and so it might nit be visible at a lap. There is a website and facebook group called adenomyosis advice and support association which is really good. Theres also a great facebook group called EndoMetropolis which is run by top endo / adeno experts and is so useful and friendly. If your not on fb theres a website called Endopaedia too with a lot of detailed info but the groups much more interative. Good luck xx

  • Hi Petunias, thanks for your reply. Are all endo clinics private as well as nhs? My local ones only seems to refer to private fees. I wouldn't usually go private but the person I'm hoping to see is an endo specialist with 20 years experience, considering whether it's worth paying to see him initially to get his opinion. I'm also conscious of time as I'm going into my final year of uni where I have to complete a placement and it will be difficult to take sick leave.

    Thanks for the facebook pages too xx

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