Diagnosed at an early age

Holly started have pain with her periods from an early age.  This led to two surgeries, drug treatment including Lupron which did not help but only gave her severe side effects

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This is Holly’s story ….

I was 15 years old and went to my paediatrician because I was having this awful aching before and during my periods. He asked me a few questions and said "It sounds like Endometriosis." To my mother and I this was a foreign language! So he referred me to a GYN who specializes in pelvic pain. After TWO YEARS of "Let's try this." and "Let's try that.", and getting to the point where I missed at least one day of school a month, I had a laparoscopy and was diagnosed with Endometriosis at the age of 17.

 

I also had a procedure done called LUNA - Laparoscopic Uterosacral Nerve Ablation - it simply involves cutting the nerves to help keep you from feeling the pain.

 

A few months later I went back to my doctor and told him I was having symptoms again. He did an exam, internal and external, and said he couldn't feel a difference, so he wasn't going to do anything. About a year and a half after my initial surgery I was in such agony for over a week that I called my GYN for an emergency visit.

 

It was at this visit he decided he wanted me to try a 6 month course of Lupron (Lupron Depot). This makes you go through a psuedo-menopause. MENOPAUSE AT 19 YEARS OLD!! But I was in so much pain - I agreed. First the hot flashes - I was MISERABLE. And I was moody - It almost ruined my 3 year relationship. And it made me gain weight. I gained roughly 60lbs in that 6 months. For a 19-year-old who has always been the "Skinny-Minny" of her family - can you imagine what gaining 60lbs. has been like?

 

Even after all that - the Lupron treatment didn't help. After the last shot I went back to him a month later and told him I was still in pain.

 

So I had a second laparoscopy to see if it was really the Endometriosis that was back because my doctor throughout this whole ordeal insists that I should see a GI doctor because he thinks it's intestinal - even though I had NO GI SYMPTOMS!

 

Also throughout all of this - I was on Naproxen first, which stopped working - and after multiple complaints and calls to his office my doctor finally called in a prescription for Tramadol for me. Unfortunately - that doesn't work either. And he won't give me anything else. He won't give me narcotics because he is afraid I will become addicted. I spend a good amount of time wishing I could just give up - have a hysterectomy.

 

How many 20-year-olds do you know who WISH FOR a hysterectomy. I don't know any.

 

My doctor just says "You're not there yet." How can all these MALE doctors know what's best for me? They don't know how I feel - they never will. I spend the rest of the time wondering with all the problems I'm having if I'll ever be able to have kids anyway. For someone who loves kids as much as I do - that's a hard reality. I get so frustrated.

 

And my poor fiance (yes the same 3 year relationship I mentioned before! 4 years now.) has to deal with it all - we go out and have to go home early because I'm in so much pain I can't stand up any more. As I type this I am in so much pain. I wish I could leave work and go to bed, but as I am in a new job and am not allowed paid time off yet - I get to sit here and pretend to be happy.

 

The average age of diagnosis for Endometriosis is 27. I'm not even 20 for another week. This disease has made me so miserable - I hope some of the other people on here have more successful stories than myself. 

 

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