Endo for 22 years and ruining my life

Hi, I've just signed up today, searching the web in desperation for answers and came across this community. I've read lots of supportive posts so I thought it would be rude not to introduce before I join in! (I posted this in 'Introduce Yourself' then realised it probs better off here, so excuse the double post!

I'm off sick from work at the moment with 'just a cold' and I'm so glad I am because my cold has coincided with the worst period I've ever had in my life!!!

I'm 41 but have probably suffered with endo since I was 19. I was diagnosed at 22 and told I was infertile. Well, I have a 16 and 15 year old so they got that wrong!!!

I was cleaned up in 3 places during my laparoscopy and given some kind of medication, it was so long ago I don't recall!

I've been having pelvic shooting pains, vaginal shooting pains, pain down my legs, back pain, waist pain pretty much all of my reproductive life. I had another laparoscopy 25 months ago, and again had ablation in 3 places.

The 2 laps have never really seemed to have done much. I've had coils fitted, I've had depo and I've taken the pill to stop my periods. I stopped the pill a few months ago as I'm sick of putting my chemicals in my body and already taking other meds too, and I thought it was all too much for my body.

For several months now I have been suffering pain in my ribs, my breast bone and upper back. I was diagnosed with costochronditis. Which I accepted - I mean, why not have yet another condition that nobody can really explain?!!! :) (I also have several lipomas, also a mystery to the medical world!)

But something has occurred to me during this particularly painful period I'm having right now (screaming out in when the pains shoot, agonising toilet visits, hurts to lie down). My 'costo' is also currently the worst it has ever been, and I've been left wondering if it's not costo at all but endo in my chest wall? Does anyone else out here have endo in their chest wall who I can talk to?

I've been backwards and forwards to my GP, and we are 'managing pain' together (I also have a scoliosis and frozen shoulder) and she says we may just never get to the bottom of all of the different types of pain I'm in for one reason or another. (I think she thinks I'm a lost cause and that I imagine my pain, she has put me on pregablin!)

I don't want to manage pain - I want to get to the bottom of it and live a normal life!

So that's me! :)

6 Replies

  • Endo in the diaphragm can cause referred pain to the shoulder as well as pain in the diaphragm area. Perhaps that could be a differential diagnosis for the costo?

  • Also would that cover the frozen shoulder? I would definitely look into it.

  • You know it probably would! I think I've had the frozen shoulder for as long as Ive had the endo!

  • Hi Mabes, thanks for your reply. I am thinking of suggesting it to my doctor, since doing some reading, but didn't want her to laugh at me. When I read on the internet, they talk about 'very rare cases' so I just wonder how seriously she will take me? I've never been convinced it's costo!

  • I think I would try addressing this with a gynae over your GP as if they are an endo specialist they'd be more likely to be able to rule it in or out. I am not sure many GPs would even think of it - I know they say it's rare, but you have to wonder how many endo sufferers are having that type of pain and being misdiagnosed as having s shoulder or rib problem with no thought for whether it could be endo/referred pain.

    You could always ask your GP to refer you to an endo specialist centre in view if your recent worsening of your period and so on.

    In the long run, I'm not sure whether you've looked at the endo being excised over lasered away. I'm not sure if anyone on the NHS offers excision, but I know I've read of one school of thought being that excision is more likely to prevent recurrence versus laser. There is a private doctor who has a website about this - you can Google and will probably find it easily. He is based in the UK.

  • Thank you again! I saw my doctor last night and she said 'I wouldn't have thought so', and moved on to blood results from last visit!

    Thanks for the tip, will look him up!

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