No help or support!

[Starley]

Hi guys, I've been waiting for a lap since the end of 2019, still nothing and the pain is getting unbearable. It hurts to do anything, I keep having to take Co-Codamol, Codeine, Naproxen, now I'm on Amitriptyline but NOTHING is helping. I'm struggling to walk without severe pain in my right side, it feels like it's around my right ovary going into my bladder, I'm constantly in pain and it feels like it's bothering my bladder, it aches so bad. On Christmas Eve I was vomiting with pain, now I'm experiencing diarrhoea and sickness when I get a flare up. I'm taking 4-6 Co-Codamols daily and I'm fully aware we are in a pandemic but I can't cope anymore. I feel so miserable, I'm 23 and it's killing me feeling like this, I have no energy, I feel useless. Every time I reach out for help I'm ignored. My period pains are nauseating and so is ovulation. My right side is swelling, I'm supposed to be getting married next year but the way I feel about myself and this whole situation with being ill all time just takes all the excitement away. I feel like my life is being ruled by this. The bladder pain is like a horrible aching sensation, almost like it's itching, it's so uncomfortable, it hurts when I need a wee and it feels like I can't wee. It's not like a UTI it's like something is pushing on my bladder.

[King91]

Sorry to hear you're in so much pain. It took me 14 years to finally be taken seriously and that was only because I was struggling to conceive and sadly still am. I finally had surgery at the end of December last year as like with yourself my pain was becoming unbearable and I also had issues with my bladder especially when I was on my period. After multiple ultrasound scans and MRI I was diagnosed with severe stage 4 endometriosis and adenomyosis. They also found a fibroid growing into my bladder and my bladder and uterus were fused together.Please keep pushing your GP. If the pain gets so bad go to A&E. It's so hard that we have to make ourselves heard and no one listens. Good luck. I have my fingers crossed for you 💕

[Claire_Alexandra]

I’m so sorry to hear this. I’m waiting for a lap too but not quite as long. Personally I got most information to on and help about waiting times by looking up the consultant who is due to do my lap and where they work privately ( Nuffield health) and spoke to her medical secretary there about waiting times and enquiring about private vs her nhs waiting list. I got more info on waiting times for both lists (for me it should end up similar so just waiting on nhs for now) but I found that really helpful. And also speaaking to their medical secretary in the nhs hospital too, I had to call four or five times with voicemails before getting a response but when I did they answered my questions so worth a try. I hope you get progress soon and get a lap ASAP no one should have to wait that long and suffer so much it’s horrid ☹️

[TennisAM]

Hi, I'm so sorry you're going through this. Its totally understandable you feel like this. It sounds like you have a lot going on internally. Are you on the waiting list for a general gynaecologist laproscopy with a bsge endometriosis specialist?

There's a painkiller called Etoricoxib (must be taken with omeprazole to protect the stomach). My GP recommended it (rheumatoid arthritis painkiller) works a treat for endo pain. I haven't noticed any side effects.

Depending on what's going on internally there's many natural things that work. I've done a lot of research. Happy to share if you send me a private message.

[LME5]

Have you been referred to a gynae and had abdominal scans - ultrasound or MRI?