Log in

Endo Girls
the ongoing saga of bloody pain
Frustrated...and hormonal...aka my attempt to get a hysterectomy  
12th-Jun-2013 03:33 pm
doctor duck
There is an old saying "When you hear hooves, think horses not zebras. Common before exotic." Yeah...I'm always the medical version of a zebra. Even my surgeon and general doc agree I need a zebra tattoo. I have Crohn's disease for which I have had an ileostomy since I was 12 years old. I also had my colon and rectum removed then. And fibromyalgia, ptsd(related to medical), depression and of course Endometriosis.

On March 25th I finally when into have my total hysterectomy. I had been in pain for years. Tried tons of things and nothing helped but doctor's kept saying I was too young. Finally at 31 I got a doctor to agree. It was also discovered I had at least one large cyst that was bigger than my ovaries. Because of my previous surgeries I knew it would be an open procedure. I don't care about the scar I want the pain gone. I want a life again.

I wake up from surgery only to be given a blow. My uterus had decided to fuse to my spine. I made the doctor repeat that several times because I had never heard of that happening. Neither had my doctors. Apparently I was a mess inside and it was getting to the point I was going need a blood transfusion they made the choice to stop fighting with my uterus since it appeared relatively healthy. Next they had to call in an urologist because they were afraid of cutting the blue wire instead of red. Again because I was a mess since I guess without a colon and rectum it made even more space for the disease to flourish. Eventually they removed my ovaries and fallopian tubes. Plus what endometriosis they could.

I was upset but she assured me that without the ovaries I should feel better. We started me on a super low dose hormone patch. The day before I was leaving the hospital I got a heavy period. But I was too worried because I know it takes a little bit for hormones to get out of the body. And I went home to start my recovery.

Three weeks later I started having pain that felt like I was waking up from surgery again. Of course my surgeon couldn't see me. I saw my primary care doctor who was pretty sure it was a seroma. This can happen but usually doesn’t show up three weeks after. But he didn't want to touch me and called the surgeons office. They got me in with a covering doctor. She argued with me that this was normal recovery pain. No. This is not my first surgery. This is not my first surgery that problems arose. I know what normal recovery is. Finally she agreed to stick a needle in me and see. Guess what? Yeah, she was wrong. Almost three syringes later I left sore but already feeling a little better.

But that wouldn't last. Because 31 days after surgery I got a second period. I saw the surgeon who gave me a deer in headlights look. But she said okay this could still be normal we could still be okay. She switched my hormones to oral. And said finger crossed I won't get a third because then she'd be worried they missed ovarian tissue.

So we all waited nervously. As it got close to the end of the month I started to notice signs that usually mean I'm about to start my period but I kept telling myself I was wrong. And then...BAM. Exactly 29 days after my last period I got a third period since having my ovaries removed.

I started crying. I was so disappointed and upset. It felt and feels like what is the point of this new 7 1/2 inch scar if I'm back at the start again?

At the moment I am now off hormones for the next few weeks. She is doing blood work to test what my body is still producing on its own. And then we'll see where we go from there. I've been having mild menopause symptoms so I guess that is good? I dunno anymore.

But now I'm wondering if I was stupid for letting someone local touch me. Most of my surgeries in the past were at UCSF, Cal Pacific or Stanford. Yet, everyone assured me this was straight forward common surgery.

My surgeon looked like she wanted to cry when I told her I got a 3rd period.

And to add insult to injury? I found out about two weeks after surgery the man I was in love with for the last year and half, the man I thought was also dealing with a serious medical condition, the man who half joked/half serious about marrying me? Yeah, he was nothing but a lie. I'm not sure he is even a he. I was a victim of Catfishing. 
13th-Jun-2013 02:02 am (UTC)
I am so very sorry

13th-Jun-2013 02:32 am (UTC)
If I may make a suggestion... Check into if your insurance covers Dr. Andrew Cook in Los Gatos. He's really well known for his work with endometriosis, and is really good.
13th-Jun-2013 02:33 am (UTC)

Also, I'm sorry i don't have anything else useful to add besides I'm sorry. :(
13th-Jun-2013 05:06 am (UTC)
UGH! I hate the you are too young thing.. My left ovary is my problem child and I just want her out, I am stage 4.. She sucks. I'm 27 and kidless, but have been told i'm infertile. So why can't I have it taken out!? I'm so sorry you are going through so much, if you need someone to talk to please feel free to PM me. Also that person who played the catfish crap has some serious Karma coming their way.. You don't mess with people like that.* Lots of gentle hugs*
13th-Jun-2013 05:07 am (UTC)
I can offer nothing but *HUGS* if you want them.
13th-Jun-2013 06:08 pm (UTC)
*hugs* I'm so sorry.

14th-Jun-2013 08:38 pm (UTC)
That really sucks.
I hope they sort it out soon.
18th-Jul-2013 10:53 pm (UTC)
Hey there. How are you doing now after your ordeal? Have you been able to get sorted out? I just joined this community but I see you posted a month ago and was just wondering how things have been going for you.
This page was loaded Feb 25th 2017, 11:20 am GMT.