Advice

[Stayathomemum]

Hey im new to this page, im looking for some advice on how to best tackle my doctor as she doesnt seem that bothered about my endometriosis. Ive suffered with it since 2018 which is when i got diagnosed.Ive spoke to my doctor as my syptoms are alot worse and i pain medication doesnt touch it but she just doesnt seem very interested and doesnt think theres any reason for me to get more tests.

As i have anxiety i struggle with how to talk to people and what i actually want to say.

Any advice on how to push my doctor for further investigation would be great thank you

Xx

[stephkp]

Hi, I’m so sorry that your doctor is not being very proactive or even giving you a basic level of care for your endo. I would write down what you want to say as it can stop you getting tongue tied if you’re anxious. Also if you could take a friend or family member as moral support, just so you have someone in your corner.

Make a list of your symptoms, dates, times, things it stops you doing, and tell them you want a referral for further testing. If you have the name of the doctor that diagnosed you, you could ask to be referred back to them

Take with you the NICE guidelines for endometriosis. These are the guidelines that doctors have to follow if someone is suspected or diagnosed with endo and something the doctor cannot ignore. If they do advise your doctor that you will be in contact with your local PALS service (patient advice and liaison service) who are the first step for complaints with docs/hospitals.

I have had to advocate for myself when doctors tried to tell me there was nothing wrong, and no one will fight for you the way you will fight for yourself. I hope you get the response you want and I’m here if you need any further advice x

[Stayathomemum in reply to stephkp]

Thank you for your reply... i will deffo write it down as i always forget or get flustered.what are the NICE guidelines for? I have looked through it but dont really understand it 😕 I would of thought her being a woman she would understand really, the amount of codiene i take and it still doesnt help shoukd say it all really.

I had a mri done a couple years back and they daw something on my bowel and thought my endo had spread as was getting symptoms aswell so thats what the test i have asked to be referred for again as i fell pregnant so couldnt have it but my doctor said she didnt see the point in me having it 🤔. I told her well i cant carry on the way i am

Xx

[stephkp in reply to Stayathomemum]

The doc I was referred to was a woman and she was useless. When I questioned her about needing further tests due to pain she said wasn’t endo, she said I’ve been doing this for 20 years I know what I’m doing. My response was I’ve been in pain for 20 years so maybe I know more about it than you. She told me nothing was wrong with me and sent me to the pain team. I pushed for a referral to a specialist and lo and behold I was diagnosed with deep infiltrating endo, andeno, and had to have a bowel resection and a hysterectomy. I wrote her a lovely letter after telling her I told you so and that she needed to go for extra training.

Also a long running theory is that pregnancy cures endo, which is completely untrue so that could be another reason why they are dragging their feet.

The NICE guidelines are a step by step guide for doctors to follow if a patient presents to them with symptoms of anything. Each illness has its own set of guidelines. They have them so in theory everyone is treated the same. I’ve found the doctors don’t look at them unless you point them out. I’d focus on this section when you go to the doctors:

1.5.5

Refer women or people with symptoms of, or confirmed, endometriosis to a gynaecology service (see the recommendation on gynaecology services) for further investigation and management if:

initial treatment is not effective, is not tolerated or is contraindicated, or

they have symptoms of endometriosis which have a detrimental impact on activities of daily living, or

they have persistent or recurrent symptoms of endometriosis, or

they have pelvic signs of endometriosis, but deep endometriosis is not suspected. [2017, amended 2024]

1.5.6

Refer women or people to a specialist endometriosis service (see the recommendation on specialist endometriosis services [endometriosis centre]) if they have suspected or confirmed:

endometrioma, or

deep endometriosis, including that involving the bowel, bladder or ureter, or

endometriosis outside the pelvic cavity. [2017, amended 2024]

Tell the docs you want a referral and literally read these guidelines at them. As you have an MRI that indicates bowel involvements raise that again x

[Stayathomemum in reply to stephkp]

Thank you thats really helpful,I have a telephone appointment thursday morning with the same doctor as she was contacting a consultant apparently to see if i needed to be referred again and said she would ring me to let me know that was 4 weeks ago so rang doctors up to follow up.

I will write everything down so i can finally get something done.

Im glad you finally got sorted and they eventually listened to you.

Thanks x

[Stayathomemum in reply to stephkp]

Also can i push to have a hysterectomy im 39 and got children so definitely dont want anymore or what other stuff can they do to help ?Thanks

[stephkp in reply to Stayathomemum]

My hysterectomy was 2 years ago and I was 35 at the time x

[Regenallotment in reply to Stayathomemum]

I’ve been pushing for this (hysterectomy) too, and they are reluctant as hysterectomy doesn’t always solve pelvic pain. They want to follow procedure of least invasive first. So waiting and waiting for MRI Hysteroscopy and Laparoscopy investigations.

I’m 51 and my kids are 21 and 23. I definitely don’t need a uterus 🤣 GP was on board (new one never seen him before) but gynae not so keen. Saw a private one who agreed too don’t jump to hysterectomy as if it’s endo that won’t solve it. More waiting to get it right apparently.

Initially I was cross about this but a colleague younger than me with adeno had a hysterectomy last year and has had ongoing pain ever since. She is atill having scans for whatever that is.

[stephkp in reply to Regenallotment]

I can only speak for myself but my hysterectomy was the best decision I ever made. I instantly felt better to the point I overdid my recovery and got told off by the doctor. I was left without many other options as my bowel was involved but I don’t regret it. The specialist said if they leave your ovaries behind 4 in 20 woman may have some recurrence of symptoms. If they take them out it’s 1 in 20. Those were odds I could work with. I left my ovaries in as didn’t want to go through menopause at 35. For me I thought if it doesn’t work I’m in the same boat I’m in now minus the awful bleeding and on the plus side, I never need another smear.

I’m sorry your friend didn’t get the results she hoped for and that they get her some answers x