New and clueless! : Hi all! My name is Jo... - Endometriosis UK

Endometriosis UK

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New and clueless!

JoannaP profile image
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Hi all! My name is Jo, and I've only recently come across this community, and I was hoping some one may be able to give me some advise.

I've been suffering with lower abdominal pains for a long time, but for the last two months, the pain has just become excruciating. So I've been to A&E, and was referred to Surgical Assesmment. I had an abnormal bleed whilst in hospital so they decided I'd be better off under Gynae, makes sense right?

Yet I barely saw anyone from Gynae during my hospital stay and was eventually sent packing with some pain killers, because my bloods and my ultrasound looked okay. No one seemed to care that I've had abnormal bleeds and was in absolute agony. I just got told I'll be seen as an outpatient but no appointment was made for me.

So, a few days later, I went to a different A&E and that's when I was told its possibly endometriosis. They again sent me on my way, and said Gynae would see me as an outpatient and I'd get a letter in approx 2-3 weeks with a date and time. It's now hit 3 weeks so I gave them a call to be told I'm being seen as a routine referral which means I could be waiting up to 22 weeks!

I'm so upset and I feel so fobbed off. I'm so much pain, and if I keep taking time off work with it, I'm going to lose my job. Has anyone else experienced anything like this, or does anyone have any advice on what to do next?

Thank you so much for reading and allowing me to vent!

Jo

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JoannaP
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helenfieldsend

Hi Jo, I know exactly what you are going through. I was admitted nearly 4 months ago with abdominal pain and they suspected my appendix, then they changed to PCOS. I was discharged and referred back to my GP for referral to gynae. I was told i would be contacted within 2 weeks but due to bank holiday i waited 2 and a half weeks, rang them and was told I was on the waiting list but probably wouldnt get an appointment till end of May at earliest and this was beginning of May. My mum booked me in private and that was a waste of time because all that happened was I was admitted to hospital for tests to be told it not PCOS it is most likely endo and I need a lap. I am still on the waiting list for the lap with no idea when it will be and my consultant appointment keeps getting delayed. When I ring for advise because my symptoms are changing or worsening my consultant writes to me and don't do anything else.

I was told if things get worse then to go to my gp and they will contact the on call gynae so i can be seen and hope and pray they finally see me as an emergency case.

At first the only way I could deal with the pain was lots of pain relief and a hot water bottle on the most painful area.

I am getting to the stage where I feel we aren't getting the right help and treatment for our female health problems and the NHS needs to change this.

I hope you get seen soon

Helen x

JoannaP profile image
JoannaP

Thank you for your reply Helen, I'm sorry to hear that you're being messed around too! It's so frustrating. I've been to my GP today and she's going to contact the hospital and see about getting me in for a laparoscopy. So I'm hoping things will start moving in the right direction.

Lindle, I've been to see my GP this morning to chase everything up, and she's given me some tablets which should help with the heavy painful periods, but she did mention contraceptives, as at the moment I don't take anything since having an ectopic pregnancy last year I've been really wary, so we stick to barrier methods at the moment.

Thanks both for the replies. X

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