Frustrated - no one will do anything to help!

[Poppy1973]

I was diagnosed with endo and adenomyosis in September 2018 following a biopsy, saw gynae in November 2018 who fitted a new Mirena coil (even though had 4 coils fitted over last 20 years and endo has still grown!). Symptoms continued so asked GP for another referral to gynae in February 2019, appointment has come through for August 2019! Had ultrasound which shows endo has infiltrated bladder wall and is inside bladder as well. Frustrated that I feel this is significant and may affect the functioning of my bladder but no one will push me forward to be seen quicker! Having to go for a wee every half hour, even up during the night several times. Spoke to BSGE centre and they won’t see me because GP or gynae have not referred me - is there anything I can do? Any advice would be welcome. So frustrated. Xx

[Catness]

Could you go back to your GP and ask to be referred to the BCGE Centre arguing that your mental health is really suffering because of this, as is your quality of life?

If I were you I would pay to have a consultation with a specialist endo surgeon privately and ask if it is possible to be re-referred back into the NHS on their list (providing they work both privately and on the NHS, a google should be able to tell you this). This approach is a gamble as it’s not guaranteed but it has worked a number of times for me xxx

[Poppy1973 in reply to Catness]

Thank you, I am just bewildered that they don’t understand how it affects people. I have looked into endo a lot since I was diagnosed (which came as a huge shock), I am not writhing in pain like a lot of people are with this dreadful disease, for which I am thank full, but it is niggles all day, everyday, like spotting, blood in wee, nerve pain in legs, pain in back, etc. I already take amityptline for migraines and have done for the past 20 years, so I fear my endo symptoms may have been ‘masked‘ you the coil, and dread what else is going on inside. They have not offered me a lap because I was diagnosed by a biopsy so gynae didn’t feel the need for a lap. Like a lot of people, I feel it is ‘brushed under the carpet’ and will sort itself out after the menopause! Sorry for the rant, just so frustrated. X

[Catness in reply to Poppy1973]

I completely get the frustration! It’s terrible. I’m nearly 10 weeks post-lap and have been having some terrible complications (bladder related due to extensive lap) as nobody on the NHS seems to care enough or realises that my life is completely on pause right now. It’s dreadful. I’ve had to pay to see private specialists and alternative therapists to get some relief of symptoms and emotional support.

Please know you’re not on your own. unfortunately too many of us have lived through this frustration and we are holding this space with you xxx

[Poppy1973 in reply to Catness]

Fingers crossed you see an improvement soon with your bladder symptoms, something that we take for granted until it is not working properly. X

[Catness in reply to Poppy1973]

Thank you so much ❤️❤️ Xxx