Endometriosis UK

Advice pleeeeaaase :(

Needing some advice … feeling very confused!

I was put on Cerazette in May WITH Provera - felt amazing for 4 months, symptoms reduced periods reduced; everything was great. Then they took me off provera and left me on Cerazette in September whilst I was awaiting lap. Had lap - didn't treat anything but diagnosed me with endp and said they wanted to try prostap injections but would be discussed with consultant in follow up in 8 weeks. This was in Oct. I was showed pictures of the endo but was told by the nurse to not ask any questions because she didn't understand it herself...

I rang the GP 10 days after my op for a sick note and she told me she had received a letter from the consultant that simply stated I had endo in my pelvis etc, and that he would see me in 8 weeks. I asked the GP about prostap and stuff and her reply was "because you are still under the care of the hospital I am not willing to get involved." At this point I felt ok about that so left it.

In this time, I have developed oily, spotty dull skin, daily recurring headaches with aura, weight increase, bowel issues, even more extreme fatigue than normal, horrendous bleeding and pain … everything that I was suffering with in the first place! I am feeling very very low about myself and constantly feel dirty due to my greasy hair and skin, almost daily bleeding and spots all over me :(

I rang the hospital yesterday to say it had been 6 weeks since my lap and I still hadn’t received an appointment yet and was told that there were no appointments free at all until he end of January or maybe even February (8 weeks hey?!) and that if I wanted to speak to somebody urgently I could visit the urgent care and emergency clinic at the hospital.

When I told her it wasn’t an emergency I just needed some advice from somebody in the know she told me to ask my GP to refer me to another hospital then :/ I want to see the consultant that I always have done, who performed my surgery, who knows me well, who has looked after me in the past and who has already made decisions about my care! Not a complete stranger! I asked if I could be booked for one of the appointments at the end of Jan then so I at least knew when it was coming up and she told me I was in a queue and it doesn’t work like that, I may not be as important as somebody else …

I can’t have another 2-3 months of this, it is affecting everything I do and I feel as though I have gone through enough in the past 9 months with fighting for referrals, changing GP’s, changing medication 3 times, suffering with endo itself, 2 colposcopys, biopsies, a lap and now I feel like I am back to square one again! I feel as though the GP has already told me not to go to them for help and the hospital are finding it impossible to fit me in so what am I meant to do :(

Sorry to rant to you lovely ladies but I’m feeling very lost and frustrated!

1 Reply

Sorry you are getting no support. It is bad enough having to deal with endo without all this additional grief.

I would go back to your gp and ask them to write a letter to the hospital explaining your condition is deteriorating . Meanwhile I would also phone back the hospital and ask to speak to the Secretary of your gynaecologist, rather than a general secretary ( and get direct number) Explain that your condition is deteriorating and your gp needs permission from him to start you on the prostap , and can he write to your gp detailing a treatment plan including addback hormones for the prostap if necessary. Say you are quite happy to see your consultant again to discuss things but you are unable to get an appointment.

Sadly you need to just keep asking in my experience. Phone every week if need be.

good luck, and i hope you feel better soon.

x x

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