Endometriosis possibly spreed

[nikkimatt2019]

Theres a possibility that my endometriosis has spread to my bowels on my right side bad ribcage and possibly kidney I still have to wait 4 months for my operation. I'm stressed as this pain is getting stronger and unbearable. The thing with my gp is they keep saying "nothing they can do until op" I have suggested to them I need more scans while waiting for up as I need to know where else it has effected and spread because where they have made me wait this long. I dont know what to do just angry and feel like breaking down!!!!

[Freddie20620]

Have you got any contact details for your consultants secretary? Sometimes if you speak to them they can pass your concerns on to your consultant.

[nikkimatt2019 in reply to Freddie20620]

Hi yes they are aware but they ain't taking this very seriously! I have to wait 4 months they have never cared about me once. Its frustrating because they keep delaying this has been going on before convid. Now convid is here they are using that as an excuse.

[Tina32]

Hi Nikki,

I am in a similar situation as my endometriosis has unfortunately spread to my bladder again and my kidneys including some other areas. So far I've had a vaginal and pelvic ultrasound and CT scan.

What scans have you had so far? What did the reports from those scans show? Are you specialist team clear on all the areas that the endometriosis has shown up in? Isnyourbop an investigative lap or are they actually removing the endo?

No body really knows how quickly endo takes to grow back and spread so even though you have had to be wait for your Op that doesn't necessarily mean the endo may have spread any further in that time.

Hope this helps

Stay positive and strong

Christina

[nikkimatt2019 in reply to Tina32]

I'm so sorry you have had to go through all that again and where its came back its horrible. I'm not to sure where its spread to this is why I'm waiting for more scans while im waiting for my op for it to be removed. My body seems to make it all grow back quite fast. I had polyps in 2019 had op was told I was lucky as I would been dead and had cancer spread through my body of it wasnt for my partner getting on to them and telling them straight. It was not ment to come back till after over a year I ended up with polys back quite fast quite a couple times under 1 year. Then I had more scans also and showed lining in my womb. Then had more scans came up there was double lining and possibility could be endometriosis. Then had mri scans done and endometriosis came up strong on scan they said I have double lining deep endometriosis. But it sounds and seems like its spread to my right side back ribs also I'm in so so much pain I cant cope when I force my self to do house work and try walk around I'm constantly stuck in pain to point I cant move or I'm also cramped into a ball with all this pain. They wanna do keyhole surgery to remove it and send it of and I need more scans to see where else it's gone. I'm in pain when I go a poo, or fart and I'm constantly needing a wee all time within 5 mins but at same time it's like its stuck on something as my bowels isnt emptying properly. I went back to gp they tried saying I had wee infection or something but I knew it wasnt. So anyway they got me to pee in pot they done test and that came back completely fine they was shocked because they thought it would come back as a infection but it didn't. So now I'm waiting for more scans and more tests while I'm waiting for them to make a date for it to be sorted. I dont have family I'm a orphan. But my real family that I hate so much cancer has ran through my family and Gene's from womb,bowel,breast while body basically alot women in family had what I have had and turned into cancer because they was left so long to point was to late cancer and everything spread to point they died they are aware of all this. As I'm ment to be checked and they have keep eye on as I've been told im high risk to getting cancer and because ny body is damaged and so much more im scared I've only turned 26 years old I've never had a life. I've been through hell and back im surprised I'm still living. So much to write but to much to point its along story and a long horrible life. And im still in that point and situation I hate everything and even my life no body cares. I've had people lie and pretend to be friends then be too faced and so on. But thank u so much for replying to me and under standing and explaining a bit about yourself. Hope u can get yours sorted as soon as possible. Stay positive yourself😊. I'm not q positive person never have been never will only because of my life tho and what I've been through and gone through and still going through. But I love helping others and supporting others even tho I always get treated like crap I will still help as I have a kind heart even tho so many people had badly treated me and damaged me.

[Tina32]

Sorry to read your story. It sounds like you have been through so much already and I can understand why you will be anxious about it all. Being in constant pain can really make you feel down. My pain had not been too bad this time around due to being on the pill for so long since my last surgery which was around 7 years ago I think but being on the pill and not being in pain has masked tha fact that the endometriosis has been spreading so you can't win really. I also have bladder symptoms but they have been more manageable since my last surgery. I've just had to find the best way to live with it all.

This is a great site to get support and not feel alone through it all as it can sometimes feel isolating and people in our lives although well meaning don't always understand.

I hope you get all the scans you need. It does sound to me like your specialist team do need a clear picture of where all the endometriosis is before they operate to remove it so you are not having to go through lots of procedures. You really want to be minimising how many surgeries you have as that in itself can come with risks including risks of scarring.

I have an appointment with my specialist team today so will see what they have to say about a plan for treatment.

Stay as positive as you can as that will help you through this

Christina