Suspected endo - any advice?

[mdox]

Hey guys,

Hope you are all keeping well.

I've just had a consultation with a gynaecologist yesterday regarding some fibroids they found last year through an ultrasound. She was really lovely and empathetic, said she has similar issues herself and like me, didn't't get on too well with cerazette, which is the contraceptive pill I was on.

I discussed more of my current symptoms with her and she said she suspects it's endo but she isn't too keen on putting me on the wait list for the keyhole surgery because of my age (I'm 21) and the wait time will be over a year. Apparently the surgery can sometimes complicate things even further, and I should wait in a wait a couple of years and see if the pain becomes worse. She also said that given I already have fibroids, the treatment will not be any different and the best thing for me to do is just to do some trial and error with birth control pills, non hormonal pills, or the coil, until I find something that works for me.

Has anyone had a similar experience? I do understand where she is coming from, but just wasn't too sure if this is the best thing/treatment for me. I will be in my final year of university next year and I'm anxious if things get worse, I wouldn't be able to continue with my studies.

Would love some advice!

[Moon_maiden]

I had three fibroids show on an ultrasound, supposed to be a bladder scan. So that showed gynae issues. GP’s said too small, gynae thought no issue, said endo. Lap confirmed endo and numerous fibroids with enlarged uterus. I am much older though so it’s had a long time to get worse. I understand why she has said this as surgery can cause adhesions.

Hope you are managing to control any pain at the moment.

[mdox in reply to Moon_maiden]

Hey thank you the response. It's really hard to see how many fibroids you have through an ultrasound, I've heard of people going into surgery to get a couple of those tumours removed and they find out during surgery that there's multiple!

How was the lap? Is it always common to get adhesions once it's been performed?

In regards to pain, the mini pill was helping with that but gynae has told me to come off it for three months because they want to run another test to check my sex hormones (I had them checked in October and some of it came back abnormal but GP didn't investigate it for some reason). I'm praying the pain doesn't get too bad during that time, but I do have a stack of tranexamic and mefenamic acid incase there's any flooding or really bad pain.

[Moon_maiden in reply to mdox]

Consultant got a bit of a surprise, as more than he was expecting to find, with endo and fibroids, he treated endo he could get to, the fibroids weren’t on the radar so never going to be treated anyway. Uterus was size 14-16 wk (they use sizing re pregnancy) so made things a bit difficult. After op he came round and said he’d done his best, I was still a bit groggy. He came round the following morning with photos and went through it a bit more. I didn’t find out it was deep endo until later. I may have missed it in explanation as still tired.

I don’t think adhesions always form, they consider it a possibility for any operation.

That’s really good they are testing hormones. I’ve had GP’s ignore abnormal bloods, happened recently. If you sign up for online access to your records with the GP surgery you can see test results amongst other things. So a test came back as repeat in a month. I had to point it out to get the form. If I hadn’t seen it nothing would have happened. 🤦‍♀️

[mdox in reply to Moon_maiden]

Oh wow! That sounds like a lot, how have you been getting on post surgery?

I've just signed up for Patient Access last week! I will be checking it regularly because all my GP does is lie to me lol. I told my consultant that they've ignored the previous abnormal results and she said she will be writing a letter to them.

Also, I was wondering with both endo and fibroids, if you start having them quite young are you more likely to have worsening pain and develop more of them? I'm a little worried it may inhibit my fertility. I was diagnosed at 20, think I had them around 18 and I remember my sonographer telling me the fibroids could multiply and grow in size, and potentially affect my fertility. With endometriosis now in the picture too, I'm worried I may need an invasive surgery in the next few years and possibly become infertile

[Moon_maiden in reply to mdox]

Have you discussed all this with gynae? It’s a really important part especially where fertility is involved. I don’t really know a huge amount about fibroids. Initially I thought they were the culprits, then once I had endo diagnosed blamed that. Fibroids can have their own blood supply, he had trouble cutting mine away and had some blood loss. But they have probably been there sometime.