Anyone else 22 with stage 4 endometriosis

[Marisa97]

Hello, i am new to this site. Recently diagnosed with stage 4 endometriosis. I am 22 years old, wondering if anyone else around my age has also been diagnosed?

[Danni25800]

Hi Marisa,

I’m 29 but was diagnosed with stage 4. How are you?

[Marisa97 in reply to Danni25800]

I’m surprisingly feeling more positive than I thought I would be after being diagnosed 3 weeks ago. Currently awaiting MRI and more surgery. How has your journey been?

[Danni25800 in reply to Marisa97]

I’ve had a rough journey but ok. Diagnosed 10+ years ago. Never lets drs fob you off. I still go to gp and they say endometriosis doesn’t exist or you don’t have that (despite three surgeries and clear photos showing it all there lol)

Keep positive it’s not easy and can feel lonely at times when people don’t understand

Wish you all the best

[Marisa97 in reply to Danni25800]

I’m glad you’re okay. Dr’s diagnosed me with IBS at a young age, which I have recently discovered was never IBS and always endometriosis. However, since the diagnosis the Dr’s & Consultants have been super supportive. But I am shocked and so sorry that you have been treated that way & I hope someone listens to you now and supports yoh!

I have had amazing friends and family during this experience, so I think that’s why i’m remaining positive.

Thank you x

[EndoZee in reply to Marisa97]

Shocking how many Dr's tell you it's IBS !! I lived with it for almost 20 years and didn't know. I just wish that Dr's - especially gyneas would learn that women understand their own bodies better than any textbook can teach them.

[Young_and_struggling]

Hiya, I’ve not been told what stage of endometriosis I have but I am 21 if you need to someone to talk to xx

[Marisa97 in reply to Young_and_struggling]

Hey. I’ll message you xx

[StefaniaJW]

If you've had endometriosis since birth (highly common), then chances are you'll have very advanced endometriosis 10 years after your first period or so, so trust me many are in your condition.

Please seek an experienced and highly skilled excision surgeon ASAP

[Marisa97 in reply to StefaniaJW]

I have already been diagnosed with the advanced stage unfortunately. Thank you for the advice & I will definitely take it. I have been referred to another specialist and having an MRI scan to see how deep the endometriosis is in my organs.

[StefaniaJW in reply to Marisa97]

Remember in the end thorough excision is what you need and need to get.

Make sure you do get it with a highly skilled and experienced endo specialist (I can help you research the one you've been referred to to assess his skills and experience if you want me to)

[StefaniaJW in reply to Marisa97]

Also remember the MRI is great to get a general idea of how deep endometriosis is but you'll never know for sure until you get complete excision. Please pick a fantastic surgeon with extensive experience treating advanced cases (stage 4/deep-infiltrating endometriosis) and make sure surgery is performed by a team of surgeons!

[Marisa97 in reply to StefaniaJW]

Thank you so much Stefania! I really appreciate all your advice. My referral has been sent to a specialist now. Just waiting to see if I get accepted and if i get put into an urgent or routine group. Hopefully get done asap now x

[StefaniaJW in reply to Marisa97]

I hope your specialist is a real BSGE-certified or Nancy Nook surgeon. It's important to be sure it's a real specialist with extensive training and experience who only performs EXCISION

[Marisa97 in reply to StefaniaJW]

I will make sure. When I go for my consultation that he’s up to date with everything x

[Sheep2016]

So sorry about your condition. Ditto to StefaniaJW and yes, you'll need to find a good gynae-surgeon ASAP, especially when present "life" does not seem to be a "life" anyway. Avoid getting into reliance for pain killers as their effect will wane away fast, leaving you feel worse.

[Marisa97 in reply to Sheep2016]

I suppose I have been lucky ‘pain’ wise. I’m able to cope with it most days without pain killers, don’t get me wrong it hurts when I cough but I can deal with it. I have researched that some women with advanced endometriosis don’t experience as much pain as those who have stages 1-3. I just get random severe pain now and again which not even morphine works for.

Thank you for your advice, I really appreciate it.

[affecting_meg]

I am 23, got diagnosed at 22. Always here!

[Marisa97 in reply to affecting_meg]

Thank you! x

[Devils_Advocate]

I was diagnosed with stage 4 at 22 (I'm 30 now). Good advice from the ladies above. I have had a few ops including a bowel resection. I hope you are OK

D x