New here

[MelissaC22]

Hi I’m new to this site and haven’t been diagnosed with endo, I was rushed into hospital and into emergency surgery last June with what they thought was appendicitis and fluid in my pelvis while in surgery realised it was a ruptured cyst on my ovary after which was told I could either have pcos or endometriosis. I have been back and forward to doctors/hospital and was in the gynaecology ward overnight and was looked at by one of the the gynaecologist who said it was nothing and the surgeon in surgical assessment said they wouldn’t operate again. I’m 22 and feel like I’m not being listened to as every time I see someone about it they tell me it’s nothing or give me pain killers and send me on my way.

Starting to really get me down and really starting to worry about it being endo as the pain is constant in between my hips till I’m doubled over I’ve had episodes of blood clots passing and almost screaming in pain and also extreme pain in my lower back and worrying about not being able to have my own family one day I’m forever reading up things about endo and pcos and getting upset and feel like I can’t really talk to anyone about it family/my partner etc because they don’t really understand and tell me not to worry I’ll be fine etc.

Anyone have any advice?

[Lindle]

I'm so sorry you are suffering and not being heard.

The first thing I would do is get a copy of the report from the emergency operation - there should also be a histology report if they removed anything and that should indicate if there was endo.

As for getting a diagnosis there is a clear treatment path for 'suspected' endo. You only need one of the following symptoms to have it suspected (NICE guideline):

1.3 Endometriosis symptoms and signs

1.3.1 Suspect endometriosis in women (including young women aged 17 and under) presenting with 1 or more of the following symptoms or signs:

chronic pelvic pain

period-related pain (dysmenorrhoea) affecting daily activities and quality of life

deep pain during or after sexual intercourse

period-related or cyclical gastrointestinal symptoms, in particular, painful bowel movements

period-related or cyclical urinary symptoms, in particular, blood in the urine or pain passing urine

infertility in association with 1 or more of the above.

The above list is actually not complete as lower back pain (often referred down the legs - usually but not always the left) and fatigue are common symptoms. Also the above doesn't emphasise the pain enough that women often get all the time and not necessarily with a period.

At your age it is so important that you are treated early to avoid endo progressing. Please do feel free to ask if you want guidance on how to get a proper referral.

[MelissaC22 in reply to Lindle]

Would I just need to phone my doctors to get the report back? Yeah I’d appreciate that I feel like I’m getting nowhere with my doctors and the longer it’s getting left the more worried I’m getting about it, I’d really like help on how to get a proper referral

[Lindle in reply to MelissaC22]

There is a formal application process for copies of your records. There are various guidelines and standards that apply in getting a proper diagnosis. Have sent you a message. x

[Moon_maiden]

Hi sorry you aren’t getting much support, it’s hard for anybody to understand and know how to help. I’m sure they’d like to, it’s scary seeing someone go through so much pain. The endo uk site has info on how to discuss with family.

I’m not sure how far you are with getting help from your GP and things like pain relief. The best way if you need to contact them is the econsult form on the surgery website. Keeps it all in writing.

When I saw the consultant he asked if I had clots, so must be of some relevance. Often felt like it could be appendix, and years ago have ended at A&E, but when period started they just kicked me out and I never did anything.

Please don’t take any notice of what the surgeon told you, likely didn’t know much about endo. It’s so important to get this properly diagnosed from someone who does. Don’t leave things the way I did.

Let us know how you go and here if you think I can help 🙂