Diagnosis for endometriosis

[Rainbowbaby92]

Hi all

I had a baby 4 months ago. She is our miracle following multiple miscarriages and having to go through IVF. I had to have an emergency c section and when the consultant came in to see me after the op advised me that it looked like I had endometriosis. It wasn’t put on my notes but advised me to follow up in the future. I have always thought that I have suffered with this. I have had horrendous period pains that make me physically sick and have struggled since my teens. Have seen a couple of gynaecologists on the nhs over the years, all of which have dismissed me but have given me a diagnosis of pcos.

Since having my little girl my periods are even worse and are much more painful. At my post natal check up I discussed this with my gp who advised that I should go back on the pill as this helps endo symptoms and didn’t think getting an official diagnosis would be helpful. The pill however seems to make everything worse.

Can anyone advise how to get my gp to take me seriously and refer me so I can get an official diagnosis? Am I best going private (I do have this option through work?) Also can anyone tell me if I will need to wait so long for the tests as I had to have a c section? Will there be a minimum wait for the laparoscopy?

Thank you!

[Mrs90]

Sorry to hear you are suffering especially when you have your little miracle to care for. I went private for my surgery it was the best thing I could have done. Six months after my surgery the NHS asked me if I still wanted to be on the waiting list … I wouldn’t have my rainbow babies without it. If you can afford it/have cover its worth it. I chose a surgeon who was involved with endometriosis UK. They may not be able to do anything immediately but they do take you more seriously. I would also ask your hospital why the surgeon for your c section told you that they think you have endo but failed to put it on your notes I would ask ASAP as they will say they can’t remember. I know that surgery can make endo worse due to the scar tissue so your c section may have affected it. Wishing you all the best in what you decide to do and enjoy your little one.

[HoveH]

If you can go private I would recommend it due to waiting times and general dismissal via NHS of symptoms. I was lucky enough to be able to do it via my husbands healthcare plan at work. I would still be on the waiting list now if I hadn't done that in July and I'd already been waiting 16 months. My consultant specialised in endo and was brilliant - she said my womb was upside down and if we hadn't done the laparoscopy it would have been very unlikely we could fall pregnant. Now 3 months later I am 9 weeks pregnant and very grateful I went down that route. It will be good for you to get someone who really knows their stuff especially if navigating around a c-section scar etc. Good luck and congratulations on your beautiful baby. x

[EndoSuckss]

If you have the option to use private health insurance, then I'd highly recommend it! Purely because the NHS waiting times at the moment are long, and you can get seen quickly with a private consultant.

I've just used my health insurance to see a consultant privately - I had the scans requested by the consultant within 4 days of seeing her initially, had a follow up to discuss the results within the week, and was booked in for a lap a month later. It was discovered in my lap that I need a hysterectomy - at my 4 week follow up she could booked me in for the following month - which is just crazy! I've found the process so much less stressful than I'd anticipated!