Wait times

[Sugar1212]

Hi, Hope you're all well?? I had an appointment this morning which was cancelled at the last minute after a year of waiting. I had to go to Bristol hospital as it specialises in endo and my local hospital said I am to complex. I have severe endometriosis, the last MRI that was done in April 24 shows endo in my pelvis, bladder stuck to my uterus, colon, POD and left ovieries is stuck to my abdominal wall. ( I was diagnosed in 2010) I am in so much pain!!

My local hospital has not offered me any pain relief or a short term solution to stop me ovulating (GRH). I call Bristol this afternoon to find out what timeline I am looking at, they said up to 50 weeks. My mental and physical state is deteriorating. I finding it difficult to care for my two children and hold down my job!!

I was on depo injection for years and it worked. I was told by GP to go on progesterone and estrogen HRT as they said I was perimenopause, this is when my symptoms returned with a Vengeance!! I questioned it at the time should I be having 3 pumps of estrogen as I have endo?? They said the gyne said it was ok for me to try. ( I was only on the HRT for 8 weeks before symptoms returned) I tried to go back on the depo but now I have an allergic reaction to it. Has anyone experienced the same thing regarding waiting. Sorry my post is all over the place I am in so much pain it is effecting my concentration x

[Mindfullness4791]

Ask your gp to expedite your appt. They did with me and I had my hysterectomy 3 weeks later. I was originally told it was an 18 month wait! Good luck x

[Sugar1212 in reply to Mindfullness4791]

Thanks x

[Sunset-lady]

As soon as I went on HRT my endo plus fibroids got worse. In my opinion 3 pumps of estrogen will have made your endo flare. This is where we need a lot more research into endo. Call the hospital and focus on pain. Tell them that you are in an incredible amount of pain and they should respond. If your appointment was cancelled you should get another soon- you don't go to the back of the queue! Good luck x

[Sugar1212]

Thanks for taking the time to respond!! I will get onto the hospital today. And Thanks again x

[KatDragon]

Hi Sugar, So sorry you are suffering so much. I have a similar diagnosis to you. I went to my GP in April 2019 saying my endo pain that I had been free of for about 5 years had returned. Since then the only treatment I have had is from the pain clinic in the form of gabapentin. I have DIE, organs stuck together frozen pelvis and chronic pain. I have been on the Surgeons waiting list in Wales since 2021 and last July at an meeting with him was told I would be waiting another 2 to 3 years! I am often bed bound by this debilitating condition. Twice my G.P surgery have asked to expedite my operation but they are no longer doing this in Wales gynae since covid. My suggestion is you see if you can get a referral to the pain clinic who may be able to give you some pain relief. I wouldnt say mine is totally effective as sometimes nothing seems effective. Hope you will soon get some treatment and relief from the suffering you have. It makes me so sad and angry that we are just so neglected by the NHS. It is unjust.

[Sugar1212]

Thank you for taking the time to reply. And I hope you get your treatment soon too x