Fifteen surgeries for endometriosis

Having repeated surgeries for endometriosis is very common and this story from Leah-Ann describes her ordeal and she is still in pain despite a hysterectomy





This is Leah-Ann story …..



What a misunderstood disease...I've been battling this disease since I was 14 and I am now almost 36! Of course I was not even diagnosed until I was almost 20.

 

I grew up in a small city where most of the gynaecologists were mostly old men and so the one I was going to told me and my mom that my pain (cramps that kept me home from school every month for at least one day), my unbelievably heavy periods that caused me to pass out at school on occasion from fatigue, the mood swings that made my family think I was possessed by the devil at times...was all in my head and that I was just looking for attention.

 

ARE YOU KIDDING ME? Who can fake that kind of stuff and who in the world would? Thank god my mother, who I think is an absolute saint, kept pushing and supporting me...she still does!

 

I have had 15 surgeries to date, including a hysterectomy and I still have one ovary that managed to survive all the other crap I have been through

 

I never really stopped having symptoms following the hysterectomy. I have struggled for several years with severe aches in my left side. It is horrible.

 

I've had different doctors suggest and treat the pain for first endometriosis, then it was found at one point that a ligament somehow got wrapped around my left fallopian tube and it cut off the oxygen flow to my fallopian tube which died and turned into a crystal basically. Then when they removed the ovary the symptoms didn't go away. So then it was thought that I had a hernia, which apparently I did, but it was most likely from my work in construction.

 

But I've had to have the hernia repaired twice after the initial repair. And guess what? The pain has not gone away. Now I'm seeing a specialist who performed pain mapping on me 10 years ago when the problem first started and she couldn't find anything at the time.

 

So now she has tried trigger point injections and nerve medications. The trigger point injects were supposed to give me up to a week of relief...I'd get couple hours if I was lucky.

 

So she has tried medication treatment like gabapentin and topiramate. Both of which did give me some relief but the side effects were unbearable. Especially the topiramate, my hands and feet were getting the sensation of "pins and needles" like they'd been asleep.

 

It would happen at different times during the day, but it would wake me up all through the night which I couldn't deal with because my job requires me to be alert and well rested.

 

So here I am, still in distress, still no answers and I really, in my non-medical opinion, is most likely endometriosis that is still in there. But because I've had so many surgeries, my doctor doesn't want to be invasive again. Again...ARE YOU KIDDING ME?

 

What else can I say that you haven't already lived through or heard about? Life goes on, I cope as does everyone, but it is good to know that there are sites like this out there where we can at least be honest, talk about it and thank god for small things like that! 



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