Endometriosis diagnosis : Hi guys, I've... - Endometriosis UK

Endometriosis UK

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Endometriosis diagnosis

XxanonymousXx
XxanonymousXx

Hi guys, I've been to the doctors a good few times now due to extreme period pain, and I've been referred to the hospital for a scan to see if I have endometriosis. I'm just wondering how long it took people to get diagnosed and if theres anything to manage the pain. Thank you x

17 Replies
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Hello

So the scan most likely won't diagnose endometriosis. But it more rules out other things. To get a confirmed diagnosis of endometriosis you need to have laproscopracy (key hole surgery) with a gynecologist who has a specialist interest in endometriosis.

Speak to your Dr about pain management. What if any pain killers do you take at the moment when you get pain?

Thank you. Right now I'm on the pill, my doctor also tried mefenamic acid but unfortunately I had an allergic reaction to it. The doctor referred me for the scan a month ago and I'm still waiting for a letter from the hospital. I'm just hoping to get answers for my pain soon.

The most annoying thing about endo is getting fobbed off. I would recommend keep details records of your cycles and pains. I find the flutter app super useful as it lets your download a PDF to give to the doctor.

I had to advocate with a lot of GPs and then was lucky enough to find one who listened- I then only went to him when I went to the doctors. GPs can recommend to other departments that your scans are needed urgently. It would be worth pushing if possible.

The more written evidence you have the better it is for you as I’ve found doctors take you more seriously. Also get a copy of your complete medical records as an adult (request a print out from your GP). I did this and realised just how many times in the last 5 years I had been to the doctors regarding pain, periods etc. I made a timeline of the last 5 years and took it to my specialist. I was able to pinpoint the times it had got worse, what I had being doing and also how many times I had been in pain.

Make them give you full blood tests as well to rule out everything else! Good luck

XxanonymousXx
XxanonymousXx in reply to Tash28

I'll do all of that. Thank you so much! X

I had awfully painful periods from the age of 11. I was diagnosed 14 years later through a laparoscopy. I went private in the end as I couldn’t wait anymore. Diagnosis can be slow and mine was quite along time ago. It’s more known about now than back then. Although diagnosis is still slow.

I had ‘Ablation’ done during laparoscopy which is a common procedure done by inexperienced gynaecologists. Excision by an experienced BSGE Endo Specialist or Nook Endometriosis Specialist is what you need. Do your research....BSGE Specialist Centres near you. You have the ‘The Right to Choose’ through the NHS, who treats you. I chose mine!

Was put on combined contraception after laparoscopy which did help with the pain but doesn’t stop progression of Endometriosis. Endometriosis unfortunately produces its out oestrogen which encourages growth.

Hysterectomy also does not cure Endometriosis due to this. Only solves issue of fibroids, Endometriomas and Adenomyosis.

An Endometriosis specialist will be able to recognise the signs of Endometriosis and excise area. Ablation is basically shaving off the visible layer. You may feel better for a while but Endometriosis is still there and will regrow.

Knowledge is power so read up as much as you can that way your gynaecologist will see that you are clued up and won’t fob you off and will hopefully refer you to a BSGE or Nook Specialist in your area. If you have to travel further a field to get the best treatment then do it. I drove over an hour to see my specialist. Some people come from Europe to see some specialist in the Uk as they are well known for good treatment and outcomes.

If you have any questions feel free as I am still in recovery and not able to do much ....getting bored.

If I can help one person to make the right choices i will. 🙂

Thank you! It means a lot to get more information x

No worries. Hoping my identical twin sister doesn’t have it too. Going to get her to go for Pelvic MRI sometime soon. 🤞🤞🤞

I've been having a really bad few days with it lately especially at night and it stops me from sleeping. I dont suppose you know of anyway to help sleep through the pains or help get ease them x

I used hot water bottles and codeine 15mg. Hate codeine and it didn’t always work but couldn’t use Nurofen anymore due to being on blood thinner for recurrent DVT.

I also went to see a pelvic floor therapist as your insides can become quite tight due to all the adhesions etc.

I hope you find some relief and sleep.

Did nurofen work for you? And thank you so much x

On the whole yes! However, got my second blood clot before my pain got extremely bad so don’t know if it would have relieved it as I had to take codeine instead. Nurofen is anti- inflammatory so slightly different to codeine.

Forgot to mention I took codeine and paracetamol together as recommended by dr as these two meds work well together.

I'll have to go back to the doctors and see if they'll prescribe me codeine or something like that then. Thank you so much for your advice

Hi, it took me 19 years to get diagnosed. I've had several tests throughout the years but only got a laparoscopy 4 weeks ago tomorrow. I found that when it was excruciating I took painkillers and Buscopan for stomach cramps and uses a heat pad. I attended acupuncture which alleviated the symptoms a little bit. I'm currently trying to conceive so that's why I can only take over the counter medicines and the reason they explored further this time with laparoscopy. Prior to this I used the pill for 13 years to get some relief.

Hiya. Thank you for that I've been on the pill for like 2 years now but it's not really helping anymore, I've also tried heat pads and other painkillers like paracetamol and ibuprofen. Hopefully my appointment at the hospital will come through soon and I can start getting answers. Good luck with conceiving! X

cn6054
cn6054 in reply to XxanonymousXx

I was on the pill for the pain initially, before having really bad side effects. I'm currently on DepoProvera for the pain. I've had 5 years on it before they've had to put me on further progesterone to control the pain.

Hiya, I’ve had 5 scans in the past 12 months and the only thing they revealed or atleast that I’ve been told is that I have a tilted uterus.

I’m finally waiting for a lap (keyhole surgery) to find out if I have endo or not but I’ve been waiting since May and could be waiting until early next year still. Don’t give up, be persistent you know your body.

Pain relief wise, if you can try something with codeine in it - I’m allergic but it’s the next strongest thing after normally NAIDS. Also hot water bottles are a god sent and I’ve tried the BeYou patches ... they’re natural remedy and for me bring some dullness of the pain for a couple of hours x

XxanonymousXx
XxanonymousXx in reply to jcb12

Thank you so much! I'll definitely try some of those. Hopefully I can see if my doctor will prescribe a strong painkiller

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