Gynae can't help, only pain clinic left.... - Endometriosis UK

Endometriosis UK

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Gynae can't help, only pain clinic left....

nayjay profile image
10 Replies

I had my third lap summer 2014, I had a mirena fitted a year ago, and now have an implant aswell. And yet I still bleed randomly, I get pain every day and most days it can get really bad and I've never found anything that relieves the pain. My consultant has said there's nothing more they can do now, and is referring me to pain clinic...which has a 6month waiting list! What am I ment to do for the next 6 months?! and is it even worth the wait? What can pain clinic do that my consultant/gp can't? Sorry..so whingey... Tired of endo effecting my life and relationship :(

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nayjay
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10 Replies
Tboag profile image
Tboag

Why can't they do more for you, demand a second opinion, what treatment have you had already,

Good luck, xx

nayjay profile image
nayjay in reply to Tboag

Thanks for your reply, I've had laser removal of endo twice, which isn't actually that bad, stage 1.which makes me feel ridiculous but doesn't change the level of pain I'm in! He's said he could another laparoscopy but I just don't see the point, neither does he really! I've never had any improvement following lap's. Seem to have lost hope that anything will ever change now x

Tboag profile image
Tboag in reply to nayjay

Most endo specialists don't use laser anymore, they now use excision, which cuts it out from roots, I would get second opinion and make sure you get a endometreosis specialist not just a gyne doctor, if you find one in your area you can ask to be referred to them, nhs freedom of choice, good luck, and don't give up.

nayjay profile image
nayjay

Thanks , will look into it :)

jvg69 profile image
jvg69

I agree, could you get to a specialist centre? Doesn't seem fair to just leave you :( x

Dollar1414 profile image
Dollar1414

Hi there I only have stage one endo, no symptoms but excruciating pain during intercourse was the only one I had, had my lap on jan seventh, the best treatment it to have it cut out not laser , with a laser there is a much higher chance of it growing back due to tiny unseen bits being left behind, which re grow, I am reffered to the pain clinic appointment in mid May , that was five months wait , I'm hoping they can do something for me , my pain is still bad but less intense since my lap. If you do have another lap I would ask specifically for excision, this may help ? I think the pain clinic is worth a shot because even though there is a wait it may be the last option and you never know what they can do for you, I can't wait for my appointment ! Second opinions are allways good to , talk to a specialist in endo , or a different gyne in the meantime x

nayjay profile image
nayjay

Thank you ladies, yeah I am curious to see what pain clinic can do.. It will be interesting to have another perspective! I don't want anymore surgery this year as I've had 5 ops in the last 2 years so I need a break, but in the future I may well ask about excision because I can't be having a lap every year and see someone else for a second opinion. Thanks very much for your advice x

I'm currently under a pain clinic and think it's been really great and helpful! From my experience, they've understood which medication they can use to treat certain symptoms a lot better than my GP. I've managed to go without Tramadol with just the medication they've given me. They also tell your GP of any treatment/medication plans so that they can follow it.

I was referred to physiotherapy to help manage the pain without so many painkillers through certain exercises, which I've found fairly helpful. They also focus on increasing your quality of life and getting you back to work or activities that you haven't been able to do/or as much of anymore.

I've also seen a pain psychologist, while this may seem like counselling it's more about looking at your mindset to try to lessen any flare ups due to stress, anxiety etc and to help you feel calmer and not cope better during flare ups. They also help you feel more positive about things that you can do as opposed to feeling down that you can't do something as much/for as long as you previously could.

It may not be to everyone, but it's worth giving it a try and see if it works for you :) x

endobegone profile image
endobegone

Excision lap is the only way to go, if you want to be rid of it for good, and pain free.

nayjay profile image
nayjay

Thank you, so helpful! Is nice to hear than pain clinic might we worth a try! Sounds like it's been helpful for you pink_pixie!

:) will see what they have to say! X

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