Gynae consultant says MRI is clear, but I've had endo treated before and I'm still in pain. Not sure what to do.

[Fitzwell]

This is my first time posting here, trying to figure out what to do and would really appreciate any and all advice!

I was first diagnosed with endo in 2015 when I ended up in A&E with the most excruciating pain. I had an internal scan in which they found a huge ovarian cyst - size of an orange, and it was only when the lady doing the scan said "how long have you been living with endometriosis?" that I realised this is what I had been living with for YEARS. For 15 or so years I had been having very heavy periods with lots of pain. I had gone to the GP but just been told it was 'normal', so I just did my best to carry on. In the op for the ovarian cyst the surgeon lasered the endo. I was trying to conceive at the time and he said if you want to get pregnant the next 6months is your best chance while the endo is being kept at bay. I was so, so lucky to fall pregnant and went onto have 3 beautiful children in quick succession as I knew that the endo could be back at any time.

Fast forward to 2020, about a year after my 3rd baby, the heavy periods were back so my GP suggested a mirena coil. It took about 6months for things to settle down with the coil and then for about 18months, I saw an improvement. Much lighter periods, less pain. But after that, with the exception of heavy bleeding, all the old symptoms of endo started coming back, with the most horrendous bloating. I could easily look 7months pregnant with a flare-up, and on top of that I found my mental health was deteriorating. After too many mornings of feeling like I couldn't cope and being in floods of tears, my partner rang the GP. we agreed that the benefits of the coil were by far outweighed by the negatives and it was time to have the coil removed. So, the coil came out in March 2022, and since then I now have a period every 19/20 days. They are a bit lighter than before, but as they come more frequently (I used to be quite consistently on a 28 day cycle), and last for a good 7 days, I feel like I have a period more frequently than I don't. But worse, I have pain in my pelvic area almost constantly. Before the pain used to me just around the time of my period but since coming off the coil I have pain every day. My last internal scan only showed some fybroids, but as the symptoms I was explaining sounded like endo to my consultant he sent me for an MRI. I had that about 2 weeks ago, and got a letter from the consultant yesterday saying it looks clear, but in the meantime I have also had a letter from the hospital booking me in for a lap surgery in March.

I know I'm a higher risk candidate for surgery because of the initial surgery in 2015 for the cyst and endo, plus I ended up having 3 C-sections, so the consultant said they would be cautious about doing further surgery, but I feel convinced there must be something there causing this continuous pain.

I remember seeing a post on here a while ago from someone else who had their MRI come back clear, but I couldn't find it this time to see what advice people were sharing. I'd really appreciate if anyone has had similar experiences or thoughts on what I should do. I've been on the surgery waiting list for a year so I don't want to lose that spot, but I'm worried because of the 'clear' MRI they'll cancel it.

Help!

[20SRMR]

Hi, this is my first time on here but really feel for you and wanted to reply.

At 48 I was diagnosed with Endo 18 years ago after years of pain. I had a hysterectomy at 32(thankfully I’d had my two beautiful girls) I’ve since had three more Surgeries due to endo, the most recent in sept 22 removing my last ovary and placing me into medical menopause.

I have many other health factors to the damage it’s caused but I’m not writing this to go into that

I just wanted to highlight that I’ve been there and throughout that time I’ve had many tests including MRI’s which have came back “all clear”

In my experience it’s never changed any plans for sugery (I’ve had 6 in total) as I’m told Endo rarely Shows up on any tests. My understanding is that it’s used to rule out anything else, so am all clear is not a bad sign for going forward with the Endo treatment.

I hope that helps and all the very best xxx

[Fitzwell in reply to 20SRMR]

Thank you so much for replying and sharing your experience. It sounds like you have been through such a lot.

Its reassuring to hear from someone, and it gives me confidence that I need to keep pushing to get to the bottom of this.

Thank you, and all the best to you too x