General help and advice please

[Bumbles2020]

Good morning everyone. Its a long one so looking for some advice please. I ahve been struggling with alot of symptoms of endo for many years now. In the last 3 /4 years I have been under 2 general gynocolgist locally. I have tried mini pill, 2 coils, had scan and mri and one lap. I have been on the prostap for over 20m and it works amazing for me. I have gone from having only a few days pain free per month to over 20 pain free days. So the prostap has had an big impact although not completely irradicated my pains. However a recent bone scan shows a reduction in bone mass slightly so I now need to come off these too. I am so worried as my consultant basically said as they can not seem to find the endo I carnt have it. I have heavy periods, blood clots, pain when weeing and bowls, pain in back like slow labour, horrid discharge harge, regular water infections and thrush, carnt bear to be examined, pain during sex and shooting pains down legs. I tend to have pain every 23 days for a few days then again after app 10 days later.(ovulation time). I asked to be referred to a endo specialist and thought I was however they are no longer practicing. I really don't know what to do next should my pain return after no longer having prostap. I am I concerned that they can not find anything but surly this much pain carnt be in my head especially as it is so cyclical. Any advice would be greatly received thank you

P s I'm in Midlands area uk

[Moon_maiden]

It won’t be in your head, so don’t let that slide as far as any medical professionals goes (I say professional quite lightly) Not sure what painkillers you’ve tried, from the pain clinic I’m on Tramadol, paracetamol, Amitriptyline, Pregabalin. Need to have a chat about Amitriptyline and Pregabalin as I want to change things and leave out Amitriptyline.

You can be referred to any hospital, they might not be registered as BSGE, but it doesn’t mean they aren’t experienced. To be honest I’ve lost any faith in so called BSGE as the consultant I had/have didn’t follow any guidelines and omitted important information. It’s important to be able to trust the consultant.

[Bumbles2020 in reply to Moon_maiden]

Thank you so much for your reply. I currently take oromoph when the pain in bad and codine during the day. Naproxen doesn't really suit me. I have asked to be referred to the pain clinic. And hoping to see a new consultant end of march so fingers crossed

[Moon_maiden in reply to Bumbles2020]

I hope you hear from the pain clinic soon and the new gynae is good.

Another painkiller is Nefopam, it’s non opiate if you or GP is hesitant about those.

How is your pain doing?

Let us know how you get on.

[Bumbles2020 in reply to Moon_maiden]

At the moment I am not too bad uncomfortable but not bad. I'm due to finish prostap early April so watch this space. I will keep everyone informed take care thank you

[TennisAM]

There's several bsge endometriosis centre in Birmingham. I'd say to PALS at your current hospital that your current specialist hasn't done their job properly (it pretty clear from your symptoms that you have endo). Say you will only accept a referral to an bsge endometriosis centre. If I were you I'd look into each consultants the bsge endometriosis centres. I read recently that Mr Mann and Mr Morsi are well respected bsge endometriosis specialist in Birmingham. Both work at nhs hospitals in the area as well as private.

The other way is to book one private appointment with your preferred endometriosis consultant. If you're happy then ask them to add you to their NHS list. You'll get to be part of a bsge endometriosis service via the back door

Either way this "professional" you're seeing now needs to be kicked to the kerb.

Happy to share alternative treatments that I've found that help. Send me a private message if you're interested

[Bumbles2020 in reply to TennisAM]

Thank you so much for all your advice and support. It's so lovely to speak to people who understand my frustration. I have made a complaint after the previous consultant suggested a psychiatrist to help with the mood swing s after coming off the prostap. I have a new consultant at the end of march as my previous one was leaving so hopefully better knowdlege. I will defiantly try to keep fighting and will look at the center in Birmingham thank you again