Need some knowledge please!

[chelsea_kayx]

So I may have endometriosis, I just got back from a&e after calling 111 from the amount of pain I’ve been in. Been sent home with a box of codeine and told it’s probably my hormones and if I have endometriosis it’ll also be that. However I still don’t know the root problem for it all. I’m grateful for them helping me, I just wish I had an answer so I knew what to do with myself because it’s making me feel down...

I really haven’t been told what endometriosis actually is, only what I’ve been able to read online. So I was just wondering is anyone could inform me in a bit more detail and from those who have to live with it.

I’ve been referred to physio as I’ve been told my muscle down in that area are spasmatic so they’ll teach me how to breathe and stop it from doing so. This will probably take a long time on the waiting list, but if anyone has had this, how did it go and did it work well for you?

Also been told to get my implant taken out and double up on the progesterone pill as I can’t take the combined one due to the side effects. Been told the coil is a good option if not, but for me personally that is something that I would never want. I’ve tried all forms other than that, which is genuinely because it’s something I’m not comfortable with having inside me.

I don’t get periods really with the implant, but I do get cervical erosions quiet a bit which causes bleeding. I’ve been cauterised 4/5 times, only once with electrical current. But when I do bleed it is very painful whether that being my period or from the erosion. I also bleed from sex which mostly is from the erosion, but it’s also painful in certain positions. This has just stumped my sex life with my partner because I’m scared that it’ll hurt or I’ll bleed everywhere like before. He’s very supportive over all of this which is amazing but it just causes me to feel crappy within myself due to all the issues. I constantly have pain on my lower right side over my ovary which they found a small cyst and they said will disappear within 4 months. That’s times been and gone so they said it all sounds like endometriosis.

However when I saw the endo team they said it was very unlikely, to try this contraception, if it’s is, it would be very mild. My last check he said she should not of told you that because everything you have described sounds like endometriosis. So I’m a little confused atm but hopefully it’ll all be sorted soon enough!

Any info or support is welcomed, I just want to be able to have a little bit more knowledge on everything, and just to see how everyone else is coping and your stories❤️.

[chelsea_kayx]

Also forgot to mention I have had issues with my period since I had one, which was when I was 14, had medical intervention just before I was 15, so I’m 6 years down the line with trying everything other than the coil. I’ve also had a lot more detailed conversation with my last doctor about all my symptoms of pain, bleeding, eating etc.

But I’ve had enteral, external scans, cauterisation of the cervix, constant STI checks, although I’ve been with the same person for over 2 years, pain meds, swapping or doubling up contraception, plenty of internal examinations, family background checks, we’ve all had issues in that region😂, other organs checked, bloods, basically a bit of everything other than the hardcore procedures like surgery! I do think I’m finally on the right path, just an uncertain one I’m going down!

[Orch1d12 in reply to chelsea_kayx]

Hey difficult to tell as implants play with your hormones. I had very little pelvic pain and never bled but my mood was a rollercoaster, back constantly ached and found sex painful due to the cysts. You should request an MRI to put a plan in action

[chelsea_kayx in reply to Orch1d12]

What will an MRI do? My cyst shouldn’t be there anymore because it’s been a while and it was tiny. Everything is down the right side of my body and the erosions cause half of my pain when they’re here😂🙄. I have a few appointments lined up so hopefully they can sort something out.

[Orch1d12 in reply to chelsea_kayx]

There are different type of cysts. Some disappear, however others can grown. MRI helps to define the type of cysts, size and location.

[chelsea_kayx in reply to Orch1d12]

The cyst isn’t an issue anymore because it’s highly unlikely it’s still there. It was tiny and apparently working it’s way out when they found it months back, I just gave on going pain all the time in the same spot that’s why they think I have endometriosis as well.

[EUKSupportTeam Partner Endometriosis UK]

Hi chelsea_kayx.

There is a lot of information on the Endometriosis UK website about what endometriosis is and the different types of treatment available. endometriosis-uk.org/inform....

We also have a number of ways to support women with endometriosis, or who are concerned that they may have it.

We have local support groups all over the UK, you can find a list here endometriosis-uk.org/find-a....

We also have a Helpline, this is staffed by women who all have personal experience of endometriosis, they can offer support and information, but not medical advice. Or they are happy to be a friendly listening ear so that you can share your concerns and worries. The Helpline number is 0808 808 2227, opening times can be found on the website endometriosis-uk.org/helpline.

I hope you find some of this useful

Best wishes

Lynne - Endometriosis UK

[Orch1d12 in reply to EUKSupportTeam]

Thanks Lynne!