Endometriosis advice please

[Holmax1]

Hi all,

I have been suffering from severe pain due to endometriosis since October which has gotten worse in the past month to the point iv been prescribed morphine to try manage the pain.

Other than the pain, I feel totally exhausted, physically and mentally. I am constantly nauseous and have been having problems with my bladder and bowels lately too. I'm 26 years old,dont have any kids yet and I have 0 control over my bladder. Its pretty embarrassing as things have become like a leaky tap down there tbh. To me this is a concern as I don't feel this should be happening but my gp doesn't think this is an issue.

Iv been admitted to hospital with this and spoke to my gp several times over the past few months however it has been difficult to get them to actually see me in person due to covid. I did manage to see him last week and I was told I had to "wait my turn and stop trying to jump the queue" .

I last seen my gyno in May 2021 and was supposed to see her again in August as I started on the decapeptyl injections but the appointment keeps getting pushed back and is now at the beginning of April. Totally understand the pressure the NHS is under at the moment, however my symptoms just keep getting worse, I'm taking 20mg of slow release morphine a day which is barely touching the pain and I am just totally at a loss as to where I go from here as I feel my symptoms aren't being taken seriously and this is totally taking over my life now.

Has anyone else faced issues like this? Like with the incontinence and not being taken seriously by GPS? Any advice on how to manage my pain would be greatly appreciated too as I would try anything at this point.

[rain0127]

Go back to yourGp and ask for your appointment to be expedited, and don’t be fobbed off , you need to keep on till you get seen. , its definitely worth seeing where your nearest endometriosis specialist is also check out the NICE guidance on best treatment, xx

[Tttt4444]

I have had undiagnosed excruciating back pain for over ten years and bowel symptoms for 20 years and my bladder symptoms approximately last five years was diagnosed stage four endo and had hysterectomy in March and they also found my bowel was fused, I have not had the back pain since the surgery but the pain was comparable to dentist hitting a nerve with the drill it was a very similar pain and I tried Tylenol three and Percocet and they did not touch the pain only thing that helped is prescription muscle relaxants and heating pad and I also suggest cannabis it is a huge help for pain as well as nausea and helping to sleep when ur in pain

[Tttt4444]

Also the muscle relaxers work for my bladder flare ups as well but depends on the cause of ur bladder symptoms mine I was told is caused by the muscles contracting in the pelvis from the endo

[Tttt4444]

And the muscle relaxers are a lot less damaging than opiates

[Sana12]

Hey, that sounds awful and they're being so unreasonable with you!! I was dragged along for around 9 months before i was referred to a gyna so i would say the best thing is to keep pestering you GP. I don't know how other GP surgeries work but for mine you have send an online form in order to speak to the doctor. Just repeatedly call in, get an appointment with the doctor, just keep at them!! It found that worked best for me i was literally speaking to the doctor every 1-2 weeks just coz i couldn't bare the pain.

I know it's not accessible to everyone, but if you can, maybe try to go private? I had considered going private once i had my initial consultation appointment through. I was referred in Sept and got the consolation appointment for late-Jan. Because i was in unbearable pain, i really considered going private for the laparoscopy, if the waiting time was going to be 5 months+ but thankfully i've been given a 3 months time frame.

Hope that helps xx

[Hidden]

Definitely check for fibroids mine was pressing on my bladder and caused bladder issues which confused everyone.

[Littlebug77]

Hello,

You are not alone I feel for you the pain is so deliberating it’s ruining my life. I’m trying to come off morphine it’s the one thing that actually works but it makes me loopy and I’m scared to become addicted ( anxiety )

I have the worst Brain fog can’t sleep can’t even get out of bed. And constantly peeing as well and sometimes i leak unintentionally

I hope you are ok and everything goes well. I sympathise with you and I’m going through it too.

Xx