Hey, I have been told on numerous occasions the care at (hospital name deleted in line with Endometriosis UK code of conduct) is amazing for Endometriosis.
However I'm experiencing the worst care I've ever come across. Prior to COVID-19 the communication has been terrible so now I feel like I have no chance with appointment cancellations. I am on a waiting list for my second lascaroscopy to remove my Stage 4 Endometriosis.
For the first time I have been put on Zoladex and Tibolone prior to surgery, I'm in my 3rd-4th month now and have experienced heavy bleeding with clots and horrible side effects for the full 3-4 months. Due to nobody getting back to me, lost paperwork, no communication.. I now only have the forum to answer my questions.
Does anyone here know if this bleeding is normal and should I be concerned?
Does anyone know if I should or will have to stop my Zoladex treatment with COVID-19 shutting down my GP and Hospital as I have monthly injections with another due in 2-3 weeks?
Has anyone at (hospital name deleted in line with Endometriosis UK code of conduct) who is waiting for an operation heard anything of delays/moving of operations and treatment requirements?
Everything feels very up in the air and it's causing me a lot of stress and concern.
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orange3
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Have you spoken to the consultants secretary? If not could be worth a try with a couple of questions she can check on. GP could be worth a shot about the current treatment.
Hey - I called the secretary for months with no answer to find out she'd been off sick since November, I finally got through to a temporary one 2 weeks ago who set up an urgent appointment.
This got cancelled on Monday where I was told they'd call instead but didn't have a call, I chased today they'd marked the record as me not attending the appointment even though it was due to them cancelling it with everything on hold for COVID-19.
GP's say I need to speak to specialists and specialists are impossible to contact; so I'm kind of in a vicious cycle at the moment.
Nope, I spent an entire day trying to arrange it but each time I called I spoke to a different person who seemed more clueless than the last... I will keep on chasing it just seems to be relentless; think all I have done is chase people for months now! 🥺
If emails aren’t working, snail mail might work, need to be recorded so you know it’s been signed for. Could be the office is shut, wouldn’t explain the email bouncing back.
In the past I’ve contacted the chief executive of the hospital, it was more general regarding a waiting area, rather than specific medical, got things moving though.
PALS can get busy could be worth persevering. It’s hard work, shouldn’t happen, but can be worth it.
I managed to get a telephone appointment with my GP who informed me I should come off Zoladex as he can't see the operation being soon enough to keep me on it. Still no contact from Kings which has been the same for 3 months now... so back to square one for me!
Thank you so much for your advise I really appreciate it.
I was so fortunate I got a great GP, I have been to the same practice many times in the last few months as you can imagine and normally they don't want to advise when on medication prescribed by Gynae.. I think given the circumstances they were happy to advise this time thankfully!
Hey, so sorry to hear this I don't have much advice tbh but wanted you to know I sympathize!
As you are at an endo clinic, did they give u contact details for the endo nurse? I'm under Univeristy College London Hospital and have an email address for the endometriosis nurse team for questions etc.
No they often just send me through to the outpatient number who really badly advise or direct me to the secretary who doesn't answer. I quite often just get cut off or told I'll get another call and never do.
I've asked for an email and I get the secretaries who forwards it onto the surgeon and it gets no where.
I’m sorry to say the gynae care is very poor at Kings. I have been a patient there . I went to St. George’s instead at one point. St Thomas has a good rep and I’m under the Royal London now. Kings aren’t responsive to pain and bleeding which is beyond me. Don’t stop your zoladex if you are waiting for surgery . Email your G.P. Ahead of time to arrange and take Tranexamic acid . There’s no reason a GP can’t give you zoladex. You can get Intravenous tranexamic acid if your bleeding becomes too much . If it does get to A and E . I don’t know how Lewisham is for gynae but in an emergency they might be able to help. Don’t rely on kings at all.
Why would the GP tell you to come off zoladex ? You just need another injection to get you to your op day . You are risking a flare up and more bleeding if you come off zoladex without proper gynae help . Not to mention the hormone inbalance
He thinks because of the horrendous side effects I’ve had I need to come off it and go back on the pill before I try to see someone again to re-look into it.. as I can’t get through to anybody at Kings I don’t have much of a choice. My next injection is meant to be in a week and I still haven’t heard from anyone to do anything to stop the bleeding and clots I’ve had whilst on Zoladex so he just thinks it’s safer whilst COVID-19 has the hospital shut 🥺
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I don't have much advice tbh but wanted you to know I sympathize!
In hospital and no one is listening! Can I ask for laparoscopy? New to this site and don't know what to do.
my experience with endo
Zoladex bleeding
Some of my experience of living with endometriosis.
"Is a hysterectomy with removal of the ovaries really a good treatment for endometriosis? NO,it is not." Pls read to help educate yourselves
