Another bad week

[Hannah307]

So I ended up in hospital this week due to severe pain on my right side. Initially it was suggested that I had an appendicitis but was quickly ruled out after blood tests came back normal. The doctor said “It’s just your Endometriosis so it’s nothing for us to worry about” - maybe I was feeling over emotional and tired but I found his choice of words really insensitive. Has anyone else experienced this? Like it’s just a normal thing to crack on with? The hospital I went to was a new one due to me moving house, and so I couldn’t get to my normal one which is Salford Royal.

The doctor I seen also wasn’t gynae ... he told me they didn’t have a gynae team and so he had to go with his gut. If I had the strength, I wouldn’t of fought and got another opinion. His sense of humour was not funny and it’s been playing on my mind ever since.

I just felt completely fobbed off. The pain I’m experiencing is shit. I went for further advice and answers and I just left feeling deflated and not important. Nobody seems to understand or want to understand what it’s like living with this.

I’m not looking for comments, I think this is more of a rant post. I’m just so upset and feel completely alienated.

[lisaevans2912]

your not alone hun, have a read thro my post earlier today. it is shit feeling like this. rant away we all need to sometimes xxx

[Hannah307 in reply to lisaevans2912]

Thanks Lisa - I’ve just read some of your posts, I hope it all runs smoothly at the end of the month. I was on prostap too but came off it after a short time because of the complications it came with.

I’m just at a loss on what to do next. Thank you for your kind words xxx

[lisaevans2912 in reply to Hannah307]

So do i, been a long time coming!!! Have they not given you any other options, xx

[Hannah307 in reply to lisaevans2912]

At the minute no, I was referred on to a fertility clinic to freeze my eggs - this was originally because when they did a laparoscopic, there was a lot going on and were worried that they’d have to perform a hysterectomy. But because of my age and my frame, they were reluctant to do any more. So I’m kind of left in the dark xxx

[lisaevans2912 in reply to Hannah307]

How old are you? Id write everything down, all questions you want answering and try get an appointment with consultant then just lay it all out and ask for a plan of treatment xx

[Hannah307 in reply to lisaevans2912]

I’m 26 - I’ve started writing things down, I think I’ve just lost the fight. Do you have any suggestions? Xxx

[lisaevans2912 in reply to Hannah307]

I felt like that, i went into every appointment knowing id get nowhere and feel shit about myself afterwards where i was so deflated. In the end i asked for a different consultant, at the time i was in and out of a+e alot and honestly i think they just wanted shot of me!!

[Confused_con]

Hi Hannah, do not give up! I’m suffering with pain in my right side and I was in hospital in December and the doctor refused to give me a CT scan because of my age (30!) they thought it was a kidney infection at first and when antibiotics didn’t shift the pain I went into hospital.

I have been back and forth with doctors since and I have a gynaecologist appointment in June! I’m convinced I have endometriosis but have yet to be diagnosed, when I finally had a CT scan in February they didn’t scan my ovaries!!!

You are not alone and please do not give up, scream and shout till they hear I say xxx

[Hannah307 in reply to Confused_con]

Thank you ❤️ I’ve decided that I will visit my GP again in a couple of weeks and contact my old gynae unit. I know my own body and to be told otherwise is just insulting to be honest. It’s not like we all want all this fuss or hospital visits. It’s hard enough to live with. Good luck in June, I hope they can push it forward. They should definitely be scanning your pelvic area - the guy the other day didn’t even go far when I was getting a scan, and just gave up within 5mins. I don’t think they realise how much we depend on their answers and thorough checks. Xxx

[Confused_con in reply to Hannah307]

Thank you, though June seems a life time away, especially since this has been going on since December. As you said we know our bodies, my GP told me a few weeks ago she thought it was a pinched nerve and I could have punched her there and then.

When I have a period it is the most painful experience ever, the pain is crippling and goes down my leg too, so like you I am convinced this is endometriosis.

If you need to talk I am always here, I understand what you're going through, take care and thinking of you <3 xxx

[enzo14]

With you completely on this one,I was told to go away and live with the symptoms and pain, after diagnosis of an ovarian Cyst, I have private health care through my work, they found adenomyosis, endometriosis, a cyst and a large fibroid

Some months I sat in a meeting at work , bled through my clothes ( soaked) bled on to chairs had egg sized clots it’s humiliating and the pain is debilitating , I’m pretty angry, it makes you feel so low,

Perhaps if the folks that suggest to go away and live with it give it a try I am certain their language and empathy would be different, take care , you deserve to have a life and be pain free, keep pushing, don’t give up, I found a consultant with empathy and understanding x

[Hannah307 in reply to enzo14]

Thanks Enzo, I hate how debilitating it makes me feel. And when they said “it’s just cysts” it’s so upsetting, I wish they could be in my shoes for a day. I can relate to the heavy bleeding. I’m so glad I joined this, I’ve felt so alone - no one can relate to what it’s like. Thank you for your kind words, hopefully our journeys get easier. Xxx

[enzo14]

Thank you, just don’t give up , if you need a chat or rant , I have been through the mill xx

[StefaniaJW]

There's not much I can say other than: just go to a specialised endo center next time or you'll have to accept that you will never get proper treatment anywhere else because non-specialist surgeons really wouldn't know what to do and couldn't help you