Over 10yrs endo and no more checks is this normal?

[Kimlaura]

Hi I was diagnosed with endometriosis over 10yrs ago as I was suffering with chronic pain and bad periods. After years of drs appointments they found endo (stage 1) after a lap. Since then I’ve been left with no further aftercare or checks is this normal? I’ve had a lot of pain over the last few years and I can swell up like I’m 6months pregnant! I have the coil fitted so I don’t really have periods anymore which is a god send but I still get pain at random times. I’ve gone back to the GP but they make me feel like I’m wasting their time tbh, they do blood tests and tests for infection etc but I know I have endo but they just shrug it off. I wonder if it needs to be re checked or is it something I should just accept? Any advice?

[GemmaAB]

Hi,

Im sorry you feel the doctors are not supporting you. It's the worst!

I have to say in my experience you can only get a scan or help with endo if you are desperate and really let the doctors know how damaging it is to your life. I waited five years after my first lap. Waited till the pain was so bad I was fainting from it. Then when I started the process of saying I needed another lap i cried my eyes out at the doctors and surgeons when I saw them. They were very real tears but I think if you want something done by the NHS you have to really communicate your need.

It tuned out my end was so overgrown they thought they might need to do two surgeries. So go get it looking at if your pain is getting unmanageable. Say you want to be on a list for another Lap.

Hope thats helps xx

[Kimlaura in reply to GemmaAB]

Thank you for your reply, your story sounds very much like mine, it’s took me over 10yrs to get taken seriously and it was only at breaking point that they referred me too. I do feel like it has grown or spread as it’s been so long since I’ve been checked and symptoms are getting worse. I will be more forceful from now on and hope I get taken seriously. X

[Kimlaura]

Is that something that they do? I honestly never had any info on what to do next after my diagnosis, they just said ok you have endo and try and have children soon if you want them and that was it. I mean I would leave it but I feel like things are getting bad x

[Maizee]

Hello there, I only found out that I had endometriosis when I had a hysterectomy.I had suffered pain in and off for years believing this was just wind. So your story does not surprise me.

I am suffering badly just lately with tummy pain and I never associated my bloated tummy with endometriosis!

I have now been back to my GP who is also baffled, I am now thinking that this is the endometriosis. Bloated,tummy pain upper and lower with some blood spotting.

What do you think?

Please go back to your GP and him that yours is flaring and you need to see a gynaecologist, sending you hugs as I am suffering while waiting so I know how lost you may feel with this x

[Kimlaura in reply to Maizee]

It sounds just like me, I have bloating blood spotting and stringy blood loss (and that with the coil, which is meant to stop the bleeding) pain low down in my abdomen and lower back and a lot of tightening (feels like a snakes crushing me). It sounds like yours is endometriosis.

Yes I’m going to do it tomorrow, all you girls have really helped me get the confidence to do something about it.

I hope you don’t have to wait to long to be seen, I know how isolating it can feel as people can’t see your pain. Xxx

[Kimlaura]

Thank you so much for the advice, I will push more from now on. It’s so nice to hear from others in the same situation as me it makes me feel like I’m not alone and it’s really not all in my head. X

[Maizee]

So pleased your going tomorrow, us women know our own bodies... It’s a shame that we often have to educate our own GP’s but I guess it’s all learning.The pain at times is unbearable and I am unsure how I can go on working if this don’t stop.

On a lighter note, fingers crossed for you tomorrow.

[Kimlaura]

Yes you’re right we all need to listen to our body’s and pain isn’t normal, it’s there because something is wrong. That must be so hard trying to work and deal with that level of pain. I’m a full time mum and I struggle some days to care for my little one but thankfully my husband is very understanding and will lend a helping hand when I really need it, however I get such guilt when I can’t cope as I feel I’m letting everyone down.

Thank you for your wishes, let’s hope they listen up 🤞🏻 Xx