Embarrassed to keep ringing GP.

[Sky342]

I had my lap in feb however nothing was found. I was and still am completely shocked by this as I have nearly every symptom of endometriosis. I believe that it was missed as it was done by a general gynaecologist.

My symptoms are bloating every day, extreme pain when peeing all month (it use to be only before my period and during but now it’s all month), awful period pains, lower back pain every day, sciatica like symptoms, fatigue, brain fog and many more. I have experienced these for the last 2 and a half years, which isn’t long compared to other women, however it has been extremely hard in every way. I am currently unemployed as I am not fit for work.

I am embarrassed to keep ringing the GP, I feel embarrassed to tell them my name as they hear it so much. I feel like I’m annoying them and I also don’t know what to say. I feel like the GP will just say we have done everything we can, which I am afraid to hear as I’m still in awful pain. I don’t know where to go from here or how to even begin another route to find the cause of pain. I feel like this is just going to be my life with unexplained awful pain. I also don’t know if I should ring up my gynaecologist as he was not very nice or supportive but I have so much to ask. Right after surgery he told me “it must be something to do with your bowels or whatever”. Which I feel like his answer will still be now. I also don’t have the money to go private to a endometriosis specialist. Please if u have any advice!!😊

[Loriiim]

Hi, so sorry to hear you're going through this. Please don't feel embarrassed about calling your GP. Like you I've been off work for the last 20 months, & I've seen my GP monthly for most of that time trying to figure out what's going on. My advice is if your GP is unsupportive then ask to see another one. If they are supportive then they will be wiling to keep exploring with you. I was diagnosed with endometriosis by a specialist via ultrasound & my first lap has been a nightmare, but I've found out a fair bit since then which hopefully will help you. It seems it's not unusual for a general gynae to miss endo during a lap - mine did & told me my adhesions were due to an untreated infection. My biopsy confirmed endo & then the assistant surgeon confirmed everywhere it was found, which aligned with my ultrasound but only after lots of questioning. I've been researching what to do next as I've been discharged with my endo still there.

There are specialist endo approved clinics you can ask your GP to refer you to. Here's the link to this list to find your closest options: bsge.org.uk/centre/

Under NICE guidelines you're allowed to choose which centre you can be referred to, & if you aren't happy with them you can choose to be referred to another. I found this out on the BSGE webinar last week. Here are the NICE guidelines incase you need to quote any of this to your GP: nice.org.uk/guidance/ng73

Keep fighting & best of luck. Don't give up.

[Sky342 in reply to Loriiim]

Thank you so so much!! Means a lot I’ll have a look at them. Hope you are well and get the help you need😊

[Moon_maiden]

Hi

There is obviously something wrong and umpteen things it could be. If you haven’t had an MRI that’s something to ask GP for, and a referral to Gastro if it’s possible that it could be. A second opinion to a different gynae as well.

You won’t have been in touch with GP more than I have, trust me on that one 🤣. I hardened myself and just say me again, or if it’s been a tough time, I’ll say I’ll keep contacting them until they get me well. It’s not easy though and unfortunately you’ll have to push. Use the contact form to request referrals/advice/medication so you keep it in writing. They need to accept you’re serious about needing to be fit and able to work.

If you haven’t requested your hospital notes do that as very useful to go over. I recently bought a surgeon to task about gallbladder op last year, supposed to look for adhesions all over, he said he had, I pointed out the op length and it was impossible. Now I’m lined up for another op! I haven’t left any of that to GP. I’ve also pointed out mistakes in a rejection letter from rheumatologist that she said adhesions are endometriosis and Endo isn’t autoimmune. Not all adhesions are Endo related and definitely not in my case. They make mistakes all the time and really don’t think what they are doing as they don’t think we will say anything.

[Sky342 in reply to Moon_maiden]

Thank you!! I previously asked for mri for my back as i have back pain all of the time however they told me no. They said they can’t refer for a mri and that i was too young (18). That is my next step as I have read about people getting mris for many different conditions, all of what I have the symptoms for. Good luck with ur op!! Hope you are well!!

[Moon_maiden in reply to Sky342]

let us know how you get on. Next time you speak or see GP have someone with you, have the phone on speaker and make sure they know the other person is there. Good luck🤞

Thank you, it’ll be my fifth since 2020, at least two shouldn’t have been necessary if they’d been honest and did what I asked and what they promised 🤦‍♀️

[Sky342 in reply to Moon_maiden]

yes I will!! Sounds awful for you no one should have to do that just to feel a slight bit better, not fair at all😞