Advice for progressing treatment

[Loubag21]

Hi, I’m new to this and to endometriosis.

I was only diagnosed due to having an emergency c-section in December 2020 despite over 15 years of suffering.

What did it take/how did you get proper support from your GP? Mine keeps giving me different pills none of which work or even help but they won’t do anything else.

Just looking for some advice please x

[TinkerQuinn]

This is awful. I have been through the exact same and been given pill after pill after pill, none of which made any difference. Unfortunately the only respite I got was having a laparoscopy and endo removal, which gave me 6 months of feeling normal. I don't think you ever really stop feeling like a guinea-pig..I think you need to push to be seen by gynae consultant and definitely push to have a laparoscopy to remove the endo that they can.

Some people swear by natural remedies, herbs, diet changes, light exercise..

The hard thing about this disease is it is so different for every person and it isn't just restricted to being a gynae disease... Which there just isn't enough knowledge about.

I hope you manage to find some real help soon.. xx

[Loubag21 in reply to TinkerQuinn]

Thank you for your response..

My mum fought so hard when I was young to get me help but nothing was done I was just told that it was because I was young etc..

And in time after you’ve been told for years that there’s nothing wrong your just unlucky to have such bad periods - you give up because that’s what the ‘professionals’ tell you.

Even when I suffered back to back miscarriages nothing was done to explore the reasoning. During my c section last year I had 3 blood transfusions - severe blood loss due to the amount of scarring from the endo - still since the day I had my son I’ve been offered no support or follow up, just yet more pills - I’m on my end different pill now in 10 months.

Now I know I don’t have to just ‘get on with it’ I don’t feel like I should be Palmed off but my GP won’t see me in person since covid and everything is over the phone.

I cry most days because of the pain and frustration..I just wish people would listen x

[TinkerQuinn in reply to Loubag21]

Oh hun, I am so sorry 💛🎗️ you have been through so much already.Unfortunately medical gas lighting is still a huge problem with endo. I personally think it is because most Dr's still don't know enough about the disease. I don't know if it has changed recently, but it wasn't even something a Dr had to be educated on. My Dr took it upon herself to do a course on endometriosis after we had met a few times.. I rarely get to see her though as they just put you through to whoever may be available and I get different advice from every single one of them.

I can't believe they discovered endo during your C.Section and still haven't even referred you to see someone 😟 I'm so sorry I don't have any advice to offer you and I really hope they manage to find something that makes life more comfortable soon 💛

[BikeRiderGirl]

If you've been diagnosed with severe endo (which it sounds like you have) the NICE guidelines which GPs should follow say you must be referred to an gynaecologist or (preferably!) endometriosis clinic. Can you insist your GP refers you so you can discuss proper treatment? If you Google NICE guidelines and Endometriosis you'll be able to read and print off what they say so you can read it to your GP. Is there any scope for you to move to another GP to see if that helps?

[Loubag21 in reply to BikeRiderGirl]

I wasn’t aware of this thank you! I’ve FINALLY managed to get a face to face apt with my GP for next week so I will definitely have a look and print this before I go.

So this is what the surgeon told me and my partner during my c-section and there’s been no follow up/investigation since, so I guess you could say it’s unofficially diagnosed. My GP has seen the notes so he knows what was seen at the time - ‘multiple deep adhesions’. I appreciate that treatment is limited and it such an unknown but it’s not right that so many of us are left undiagnosed for years and the have to fight to get any kind of help and treatment.

Thank you for your reply this has really helped as I wasn’t aware of this x