Sunday, July 23, 2017

My Lady Parts

For some this is going to be a TMI post.  However, my period has been highly irregular since contracting CFS/ME and I've found that no one talks about this even though it is well known that our hormones are totally whack from the illness.  To my mind that means it is going to screw with Aunt Flo's schedule and then some.

History in a nutshell.  Prior to CFS/ME I had very regular periods which were moderately heavy on the first day and then tapered off and lasted 5-7 days total.  I could mark my calendar and it would arrive on schedule give or take a day.  I could even head off my PMS crash with B6 dose if I paid attention.  Anywho....

Then came CFS/ME.  After the first six months, when I started to get severe symptoms, my period stopped.  Being 48 at the time, I figured it was a menopause thing.  Then, six months later, it showed up but it was very heavy for two days and tapered to almost nothing after that.  This irregular schedule kept up.  Nothing for some random number of months then a ridiculously heavy period.  Slowly the periods got worse.  I started to pass clots.  I went to the ER because I was bleeding so much it was making me dizzy.  I got anemic from it.  Then, the periods wouldn't stop.  I would get the heavy onset with larger and larger clots and while the flow did taper off it didn't stop.  I would bleed for weeks until I was dizzy from anemia.  If it did stop, I would only last a few days and a new period would start again.  Finally, my new ob/gyn gave me prescription strength progesterone to stop the bleeding.  It worked.  I would let the period run for about a week and then call him for ten days worth of pills.  Finally he said no more.  I had to go see him in the office before he would give me any more pills.  So in I went and he did an exam.  He couldn't see much.  After one of my hospital visits, my CT scan of my kidney showed I had an enlarged uterus so back I went to my ob/gyn after I got out of the hospital.  I told him and he said he already knew that.  I have no recollection of him informing me of this however.  But now he wanted to do a D&C to see if I had cancer or fibroids or something else going on.  Hence the D&C last fall.  Turns out I have a sizable fibroid which was probably causing the problems.  Well my ob/gyn being very old school guy only gave me one option; hysterectomy.  Of course with all the other crap going on: mold exposure, moving, CFS/ME crash; the last thing I wanted to do was major surgery so I put it off.

This spring I found that Brigham and Women's in Boston has a special ob/gyn dept just for minimally invasive surgery.  Woohoo!!  Second opinion time!  I was nervous because I'm now over 300lbs and already had one run in with a verbally abusive doctor.  Turns out the surgeon I saw was awesome!  He was so nice and very respectful.  He went over every possible course of action available to me.

He did need an MRI before we could come up with a game plan though and that turned into its own ordeal.  I'm now so big that I no longer fit into the scanners.  I had to go to a facility that has an open frame scanner.  Again it all worked out in the end since it was closer to my new house so easy for me to get to.  But I digress...

Turns out I have a large fibroid attached by a stem to the interior of my uterus.  So we talked over the types of surgeries I could have, all the risks involved both from the CFS/ME, the surgery itself and my weight.  We also discussed some non surgical options.  After a good think, I decided on one of the nonsurgical options.  He told me that the likelihood of me going into menopause during the next 12 months was really high.  At 55 I was already in the 5th percentile of women that still had their periods at this age; i.e. my periods should have already stopped.  I am to use prescription strength progesterone as soon as my period starts to halt it.  Stay on it for ten days and then stop.  If my period continues then call him and double up on the dose.  We are going to do this for the year and see if I go into menopause during that time frame.  So far so good.  I've had one period that I stopped within two days.  I'm no longer anemic but still dosing with iron.  I need another blood level taken and I see my new GP next week so I'll ask her to do the draw for me.

I'm so happy I went for the second opinion.  The doctor was super nice.  After the initial visit we did all the follow-up via phone which helped me greatly.  He was honest about how my weight was going to affect my surgery risks but was very respectful about it and didn't shame me at all. And best of all I get to keep all my lady bits!  Woot!!

I like my plan.  The prospect of having major surgery and the following crash was just too much for me.  It makes sense to me to leave everything in place and deal with this with medication for a year and just wait things out.  Let nature handle this with a little help.

On a side note, this also means that I can try both fish oil and B12 again without triggering a nonstop period.  Both would start a period and I had to stop each one due to excessive bleeding.  So things are looking up.

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