Please help 🥺

[Adnalim]

Hello everyone, looking for some advice 🥲

I have an issue at the moment effecting my daily life, I am bleeding daily and have been for months- not just period either. I was referred out by my gp for investigations which did not identify the issue- However, I told my gynae team and they are also investigating this - as I also have bowel endometriosis and currently am very prone to urology issues they’ve said they’ll bring the case to an MDT.

I am very greatful for this, the problem is that while I wait for this, I am still having the issue. I had scans done very promptly and now 2 months has past- I don’t want to rush the gynae team but my GP has said they can not do anything for me while it’s being investigated in hospital.

I can’t seem to get in touch with anyone I’ve been advised to contact within the gynae department, even the secretary is away. And extension codes I’ve been given just ring through , no one answers and I’ve been trying for a while.

I’m just feeling very lost. I don’t know what to do and I haven’t heard from anyone, my GP said they can’t help. Any advice on this?

** Adding - I am also under fire at work for triggering absence. Earlier this year when the issue arose I was referred out for bowel cancer investigations- I also had an awful infection that took 6 courses of antibiotics to treat-including a long term course of 3 months.

Within the space of the year I have had my laparoscopy, cancer referral colonoscopy, cystoscopy and had to visit A&E twice for my infection. I have only had a total of 3 days off throughout it all🥹

I was told the reason I am being bought to HR is because I didn’t tell them I had underlying health conditions and so the normal procedures won’t work for me. I work in a hospital and so had occupational health assessments where I declared everything?

I get awful anxiety taking sick days and I even used my annual leave for my recovery post op. I feel really let down - anyone got any advice for this?

I won’t be name dropping but honestly I could cry at how frustrated I am - no one will pick up the bloody phone!!!!!!!

[WhatTheEndo]

Hi… I’m not sure I’m going to be much help but I feel your pain… I have endometriosis & adenomyosis. I no longer just have periods, I bleed more than I don’t. I have the coil in situ, have taken tranexamic acid, mefenamic acid, provera daily yet it did not calm my bleeding.

I bleed so profusely I cannot leave the house, resulting in hospital admissions and numerous iron infusions. They last gave me GNRH putting me into menopause lasting 3 months to give me rest bite until my next surgery.

It’s a nightmare… I now suffer anxiety and low mood as everything is a constant battle.

Just keep strong, keep calling… Be persistent

I was gas lit by doctors for 20 years… No more , I should of listened to my body…

[Adnalim in reply to WhatTheEndo]

God yes the only thing they give me are anti depressants to shut me up. I feel so let down - I love the nhs , I work for them. But there’s no way this is right, and on top of that work had just pushed me over the edge when I’ve tried so hard to turn up every day- after everything I’ve had and am going through. Merely 3 days out of approx 253 as someone with a chronic illness im just so sad lol

[Purpleindigo]

God this sounds absolutely awful. I cannot believe you have been though all of the investigations and procedures and only had 3 days off. If you need someone to tell you. That is incredible, you are incredible.

Hopefully some of the below information/experiences can be of help. I work in the NHS and suffer with severe endometriosis.

- bleeding constantly; this is NOT right, yes you have had multiple investigations promptly, which is great. But have they not offered you any form of contraception/GNRH/progesterone? These medications can stop or slow bleeding and are a recommended component of endometriosis care.

- not being able to contact anyone; go to PALS and make a complaint. For extra oomph read into the NICE and RCOG guidelines for endo and quite where they have breached. You can even report your case to CQC for reference if necessary. It sounds like they should have offered you the medications above and an MRI.

Also are you under the care of a BSGE centre? If not get referred ASAP as they are the experts in endo, local hospitals often make mistakes in diagnosis and treatment.

- work; I'm guessing they've placed you on a stage 1 review? If you informed occy health when you started of all your medical history and anything new since then has developed, they do not have a leg to stand on. They employed you knowing you had a chronic health condition. I have been in your position. I was on stage 1 but in reality I only had missed 4 shifts out of 72. I went to occy health with my concerns and sited the equality and disability act. As someone with a chronic condition you have to be treated under this act and anything else is discrimination. My endo absences are no longer counted within my Bradford score, as long as they are not long term.

It's F****** horrendous that even as an NHS worker you get absolutely no understanding, you don't even get fast tracked care, even though they are delaying your treatment, but then moaning you can't work at 100% for them 🤣

Hope this helps xx

[Adnalim in reply to Purpleindigo]

Thank you so much for this, I have only read briefly but this is so helpful- I really appreciate it. Will get looking to prepare myself , yes only stage, 1 but I feel very let down and disappointed specifically because they mentioned about ‘not declaring it ‘ or what ever !

So belittling, I live with it every day - would it have stopped them hiring me even though I’m qualified? So frustrating.

I was given tranexamic acid but only to use during my period because they don’t know what the issue is. I’m just so tired of living like I’m 80 , I’m fully loosing some of the best years of my life because I can’t control my pain/ look after myself 😭

[Purpleindigo]

Occy health will have your health info from when you joined. You can always invite them to the meeting so they can back you up and say actually she did.

They wouldn't have been able to not give you the job based on your medical history. Because it was a diagnosed chronic condition , they would have been directly discriminating against you! It's not like some repeat offender who is off for random stuff all the time.

It is hideous, I'm 28 and feel an incapable mess , I live in constant fear my partner and friends will come to see me as a liability.

Feel free to DM if you need help x