Venting Go fish - a crappy analogy for a crappy situation

[Red]

In a bad way again due to this stupid incurable disease and its as of yet unidentified comorbidities; whinge, whine, go ahead n skip if you can't hack the woe!

Spent the last two days in bed, sweating, shivering, writhing in pain as another flare holds me in its red hot grip; sleep reserves depleted, now completely conscious to experience the discomfort in all its glory. No position is comfortable, unable to even find a tolerable temperature; the now familiar, but no less terrifying, red-hot razor wire jolts running through pelvis and legs; sharp jabs like javelins hitting chest, spine and joints in the world's most sadistic game of "bop-it". How much longer must this go on?

Researching endometriosis and adenomyosis online just makes it all the more hopeless; no sure-fire cure, no way to make it stop, half my symptoms can't possibly be due to these diseases anyhow. Many treatments tried and failed - even ripping everything out might not stop it and if it did, it's likely to be the start of a whole new host of problems as the body kicks in to sudden, forced menopause.

Thinking it all moot anyway, as all investigations and treatments are currently on hold due to covid, with no clue as to when proper medical attention will be attainable again barring an indisputable, immedmedical emergency.

Wishing not to be in limbo - either alive and kicking or dead dead dead, not this crappy purgatory filled with all this endless pain and guilt. I hate it so much, long for the days when I was useful and active and able to do so much more than this.

Were it not for my son and fiancé, I wouldn't be here. Love is such a double edged sword; it is what brings me light and joy and reason for being. Yet it is also the thing that tethers me here to this crumbling shell of a body, forcing me to endure such persistent physical torture.

Trying to be grateful for the few good cards I am still desperately clinging to. I'd need a complete re-deal to get a significantly good hand to anyone else but all I want is that one card, the "good physical health" card and I'd be happy.

I've seen so many different doctors over this last half-decade that there should be no good reason that I remain largely undiagnosed and untreated. Consultants, surgeons, you name it; I've had blood tests, scans, surgeries; spent thousands of pounds on private medical treatment as well as enduring NHS indifference and incompetence. Somewhere amongst all these places lies the "good health" card I'm searching for; I'm convinced that many, should they just put in an ounce of effort and shift a card aside, have it among the ones in their hands, but you know what they invariably end up saying instead?

"Go fish."

(Go be somebody else's problem)

(Go fuck yourself)

I was never good at card games.

 

[Outsider]

Sorry for your pain, my wife has endometriosis. I have been with her many times in hospital on emergency and with many doctors only to get oral or injection painkillers. Luckily oral contraceptives work (visanne). Fuck mental health system, how can they be so oblivious and ignorant is beyond me.

 

[OpheliasFlowers]

I relate to so much of your post. It breaks my heart that you are going through all that you are and have to cope with the 'unknown factor' of what's happening to your body and causing you so much pain. And the useless tests and doctors (and often, asshole doctors lacking in compassion.) I say all that as someone who, like you, has many physical health issues which cause me pain and other physical problems that have totally destroyed my quality of life over the past 25+ years AND about 98% of the pain and symptoms are, again as in your case, undiagnosed. I have been brushed aside after awhile by so many doctors when they're unsuccessful at finding the reason/cause/diagnoses for my constellation of problems that I've pretty much reached the point of not caring anymore. If they don't care and I'm not worth their time, why should I care? The only reason I do care somewhat is I wish the pain and suffering would STOP.

Having said all that, I also wanted to say that I was diagnosed with stage 4 endometriosis in 1997 (though I'd been having pain and excessive bleeding and symptoms each month since about age 16). I went through various treatments for it for 4 years, then had a total hysterectomy in 2001. I know that was a long time ago and hopefully medical science and treatments (and pain management) has gotten better since I went through all I did. But the emotions and the pain and everything doesn't change over the years -- so if there is anyone who needs to vent, or wants to talk to someone who's 'been there' in terms of endometriosis and surgical menopause concerns, just ANYTHING, I'm here. I remember what it was like to have questions and fears and feel alone in dealing with endo and all it's implications and impact on a woman's life and relationships and really, all aspects of her life. So please anyone reading this, feel free to PM me if you'd like to. I don't know how much I can help in advice or knowledge about current treatments for endo but I can listen and I can certainly talk about the early menopause part of it all.

OP, I'm sending you all the support and good thoughts I can. I know nights like you describe. I pray that get some relief soon, even if only a good sleep for awhile. <3 And again, I'm so sorry you're hurting so much...I"m so sorry for ALL who are hurting physically and/or mentally. Love going out to each of you.

 

[Red]

Thank you, it's so hard to keep going knowing that even the people you pay to figure things out don't really give a damn. Most times the symptoms are of such a personal nature that it's hard to speak about them, especially because I live only with males.

The rest of the time people just expect you to "man up" (hah! With my FEMALE DISEASE!), "adapt" and "get on with it", all the while not knowing the full extent of my pain and loss.

Are you still in pain after your hysterectomy?? If you'd rather I ask in private please say and I'll PM x