Surviving endometriosis

[Aimv]

Hello,

I'm a long time sufferer of Endometriosis. Had 3 surgeries, use numerous methods to ease flare ups and awful pain during and after my period. I did have a coil, but had the removed 2 years ago due to constant bleeding. It's been very manageable the last few years but recently it's getting really bad. So bad I can barely walk it's that painful.

I guess my question is, does anyone have any other tips / vitamins they find that have helped them?

I'm on the wait list for a scan through my GP

What can I ask the GP for pain medication wise? I find with my GP she is quite dismissive of Endometriosis and she has even rolled her eyes at me before.

Thanks in advance

[Anna_EndoUK Moderator]

Hi Aimv, can you change your GP? She doesn't sound very helpful, you defo don't need someone rolling their eyes at you! In terms of pain relief, I find a tens machine really helpful. Mine was £25 from amazon and I love it! xx

[Aimv in reply to Anna_EndoUK]

That's interesting about a tens machine. I will have a look at those. Thank you. I'm a bit stuck on the GP where I'm registered unfortunately, I always seem to have to push to get anywhere with them.

[Anna_EndoUK Moderator in reply to Aimv]

:-(, that's rubbish, I'm sorry! Can you make a symptom/pain diary to take to your GP to show them how much it's impacting on your life? Also, it could be worth asking to try some nerve blockers, such as amitriptyline, duloxetine, pregabalin, gabapentin. They can really help some people xx

[Aimv in reply to Anna_EndoUK]

That's a good idea on the diary. I started taking amitriptyline for bad leg pain (nerve related we think but nothing conclusive found)

I haven't found it's helping my period pain, I've been in awful pain for a couple of days now.

Definitely going to speak to the GP tomorrow. Xx

[haimfan94]

Sounds like you need a new GP!

[Avourneen]

Wow a GP like that! Do you realise you pay the GP's wages via your taxes? Does she? The GP is a public sevent she is paid to help you, helping you is her job. Mind you, having said that if she is so unsympatheic you probably won't be able to persuade her. I have one horrible GP at my practice who is really grouchy and bad tempered. He shouted at me one day because I had lots of pain and he really hurt me when he did the smear test becuase he was so rough. I wrote to the GMC and the practice manager and put in a written complaint about him.I have spoken to lots of neighbours they all say yes he is so horrible but they don't complain. If everyone complained there idiots would get fired.

He had to write a 8 page letter apologising for his behaviour and I think the complaint remains on his record. All the other GPs are great and I just make a point that whenever I ask for an appointment I always specifiy that I do not want to see him.Now i just see the other doctors who are all kind and caring. If your GP is rude and unkind just specify when you call that you would like to change her to another doctor.

I found that a painkiller called dicofenac really helped me but you should not stay on it for a long time. Can you get a scan privately ? It will really speed up the whole process and you can make sure it is done by a specialist sonographer. If it is done by someone who isn't experienced at scanning for endo it may well be a waste of time. If you have a scan showing how bad it is it can push a gynae to act more quickly. It sounds like you need help as soon as you can get it.

Good luck. xxx

[Aimv in reply to Avourneen]

That's a good point about a private scan. I assume I can search for one that can identify Endo on such scans xx

[A5555]

Instead of going to your GP, can you visit your local sexual health clinic to get advice? I found they were particularly helpful for me x

[Luna-24]

I have acupuncture has helped and have also been prescribed narproxen for when I get severe pelvic pain

[Olivebranch4food]

Medical gaslighting is one of the worst things to happen especially post COVID as doctors have become too lazy to do their jobs rightly, they are so quick to dismiss your symptoms like they know your body better than you do but what they don't understand is this! Our bodies have a way of telling us when something ain't right and how on earth could anything doctor who took an oath to treatment patients be cruel and to think as a female doctor she's supposed to understand how it feels just to feel menstrual pain let alone endometriosis related pain, pls and pls file a complain and have her sanctioned plus an apology because believe me you are not the only person she has done this too and if someone doesn't report her she will continue doing so. As for pain management I always end up in the hospital and pain injections are the only things that come close to touching the pains.

[EmB18]

I found that making some diet changes helped reduce my symptoms. For me it was taking out wheat, sugar, caffeine and alcohol that helped and then eating more anti-inflammatory foods like fruit and vegetables. Sometimes it's worth trying a few different things to see if some combination of things helps.