Where can I go to be taken seriously? Anyone know of any good places to be treated?

[music_meg]

Hello

I'm 19 years old and was diagnosed with 'mild' endometriosis last year although I have severe symptoms. I have been treated using contraception but nothing seems to be working!

Last night I was taken to A&E with severe abdominal pain and it took tramadol, IV paracetamol, morphine and diclofenac (taken up the bum) to relieve the pain and was discharged this morning with just paracetamol and codeine (which won't work)

Doctor's aren't taking it seriously and don't realise how painful it is and I'm constantly being told to go from the gynaecology department to my GP (and vice versa)!

Does anyone know of any good hospitals or specialist endometriosis clinics where I can be taken seriously as it's literally destroying my life?

Thank you

xx

[charlie83]

Hi there musicmeg

I'm so sorry to hear about all this pain, it's awful and i know exactly where you're coming from.

Whereabouts in the UK are you based? have you got an actual gynaecologist doctor treating you? it must be really frustrating to be pushed back and forth like that; have you been offered any other treatments?

as im sure you know, having what they call "mild" endometriosis, is totally unrelated to the amount of pain you experience. I've been to a&e myself and i know its really traumatic as they fob you off with painkillers and you feel hopeless - but don't give up!

In the short term,have you tried hot water bottles? they are my saviour!!! and try to be kind to yourself, i know its really tough.

i am confused as you have been diagnosed and should be getting much more support and guidance.

Hope to hear from you soon

lots of hugs

[music_meg in reply to charlie83]

I'm based in both Bath and Kent. I don't have a gynaecologist because they keep sending me back to my GP but my GP doesn't want to know! They've told me briefly about the coil and injection but they've just left me stranded!

Yeah I understand that but the doctor's don't even seem to understand that! it's soooo frustrating!!!

I haven't tried hot water bottles but I'll give anything a go!! It's annoying to think that part of you is causing such unbearable pain!

I have been diagnosed but I had to go to the GP 5 times with the same times saying I had endo before they sent me to gynae but then they just sent me back to my GP! I feel like I need support and guidance but I'm just not getting it!

Thank you for the reply

Megan

[sully1]

were do you live hun i had a gynae and my treatment was shocking i now have a endo specialist and he is fab i have never looked back he is so understanding and explains everything to me so i understand whats going on my gp found him for me i have to travel a little longer but i don't really care as long as i get the treatment i need instead of being fobbed off

[music_meg in reply to sully1]

Hi I go to uni in Bath but my home is in Folkestone, Kent. I'm honestly happy to travel anywhere in the UK as it ruined my mum's life and it's just taking over mine! I just want the right treatment! where do you go?

Thank you

Megan

[MoonlightB in reply to music_meg]

Demand they send you for an ultrasound and if that's clear think about getting the coil. Maybe take a relative with you it can help to have an extra person there to back you up.

[Hidden in reply to music_meg]

Hi music_meg I also live in Folkestone and am just recovering from my 5th surgery. I am with Manor Clinic and see Dr Fernandez & Mrs Dixon who are both very understanding and after getting no where with gyny services I asked to be referred to Kent Endometriosis Clinic which is based in Tunbridge Wells kendoc.org.uk/ there is certain criteria though.

My advice is to find a doctor in your surgery that listens and take information with you, I used the Endometriosis UK questionnaires and keep at it!

I found Amitriptyline really good for pain relief when painkillers were no longer useful. I hope you get some proper support soon xx

[KatieD]

Hi, so sorry you are going through this. Even if you only have 'mild' endo it is worth getting it removed. There is an excellent endo team at the Royal Surrey in Guildford (I just recommended this to someone else!). I would see if you can have a private consultation and then get on the NHS list for surgery. I agree hot water bottles are great! Or buy an electronic heat pad, they are not expensive. Heat makes a big difference to me. Good luck.

[lemmi]

I see and endo specialist in Oxford if that helps, only seen him once and he was helpful. He is well respected in his field from what I've heard. Good luck honey and let me know if you want the details x

[charlie83]

Hi musicmeg

Yep, it's really important to find a specialist who will take the time to listen to you properly and advise you properly on what to do. I know it's hard but sometimes you really have to "shout" to be heard! i was never good at that before i had endo, but am an expert now!!

I wouldn't recommend the coil as there can be many really bad side effects, but everyone's different; don't let them rush you or pressure you into making any decisions that you're not totally aware of the pros and cons.

There is actually a lot of info on mirena coil etc on this site.

Painkillers can be really helpful short term but you need help and professional advice on the best way forward that will be of most help to you.

If you have someone who can go to the appointments with who can support you and emphasise to the doctor how much you're suffering,that can be a real help too.

It's not fair that you're being fobbed off like this, so keep pushing - i know it's hard when you're so drained and in pain, but it'll be worth it!

Take care

xx

[H4PP1]

Hey,

I would strongly recommend looking at your diet, my pain has changed dramatically as a result of taking supplements and changing to organic meat and foods. My nutrionist did a blood test that found which hormone and blood levels were low and has helped me to balance this... the GPs just dont so that.

I would say google endometriosis and diet, and also endometriosis and nutritionist to see if there is an experienced specialist that can guide and help you, took me 6 yrs pf pain to find all this out and my life is changing now, wish I knew sooner.