How to feel after diagnosis?

[Mabelsmum1]

I started with endo symptoms in 2020, in 2022 I finally had a laparoscopy to diagnose me with endometriosis. Since then my specialist told me it’s a mild case etc and apart from going onto the pill it was just using pain management. The pain got gradually worse and my specialist gaslit me into thinking it was how it would be and that I’m lucky it’s a mild case. We are now in 2024, I had an MRI in May and it took over 2 months to receive the results, I was dragged to two appointments on the promise they had the results and both times I was let down. Finally receiving the results my specialist rang me to confirm it’s still a mild case, only a tiny bit has grown on my left ovary and that I was being discharged.

Today I paid privately to speak to a new specialist, after reading my notes and my MRI report she has explained things thoroughly and has told me my case is not ‘mild’ as I was led to believe and if my previous specialist had read the full report he would have told me I am stage 4, how my right ovary is stuck to my uterus and that I have a 12mm endometriotic deposit. I am now being referred for more invasive surgery and being put on different medication to help ‘mask’ the pain, how I have to take sick days during my period as it’s debilitating and how she cannot believe I have been going day to day without any proper help.

I don’t know what to think, I’ve gone from being ‘a mild case, pain is pain and it’s how it is’ to being told I’m stage 4 and needing further surgery, injections etc to help me live day to day.

How did you come to terms with your diagnosis? I feel like I’m now grieving all over again since my first diagnosis and at the same time I’m relived to have found someone who can help me

[Bakewey]

Hi

I’d like to have some magic words to make you feel better, but all I can offer is your story, sadly is similar to mine. I’m nearly 2 years on from my stage 4 diagnosis and am now facing a total hysterectomy before the end of October. The advice given to me from the private doctor was only to seek help from a particular hospital; she warned me the wait would be long but the treatment the best in the area, and I have to say, though a slow route, I’m filled with confidence with the new team.

This site has really helped me come to terms with my diagnosis and when my head starts spinning out some one on this site will put my mind at ready and reassure me that all will be ok in the end.

To finish on a positive, you are now at the start of a journey where with time you will get the answers and care you need - most importantly, you trusted your gut and got a second opinion. I find solace in the fact that my diagnosis confirms I’m not a hypochondriac! When I have a bad day there is a genuine reason for it.

Fingers crossed for all of us searching here for guidance, hopefully we will all start to feel better soon.

[Chartolfrey]

I wish i could give u the answers aswell but this condition is so hard.For years i was put on different birth controls the pill, implant, coil all giving me problems.

Jan 2023 i had a ultrasound for constant uti and they said suspected endo, had a appointment in july with gynae who got me to sign forms steaight away for lap surgery being told 1 year. Ive spent alot of time in a&e over xmas with pains so bad they thought appendix anyway january 2024 i had lap surgery to wake up and be told its so severe they couldnt do anything i needed a mri 6 weeks post op. I got 1 6 weeks to the date and 1 month later my results.

Severe endo, adeno, fibroids, x2 5cm endemeteiomas and my ovaries are kissing with bowel stuck to them.

It was a shock so i started zoledex injections and signed more consent in may and told 12-18 months for full hysterectomy.

Its changed my life, my mental health and some days i feel so lost.

This site really does help so always here for a chat. Just remeber u now have answers so ur journey can begin but this is a long journey