Finally...the Verdict.

I heard back from Dr. David Redwine today.  He is "the man" for endometriosis surgery.  I sent my information to him three weeks ago hoping for a response that said something like, "Yes!  I'd be happy to remove your endometriosis and save your uterus and ovaries because that is just the kind of guy that I am!"  Well...no. That's not exactly what he said.  He feels that at least some of my pain is likely coming from the uterus itself and the only way to remedy that is to remove it.  He suspects adenomyosis.  I'm not totally convinced and I'm struggling with a legitimate concern; why am I so fiercely arguing in my head with a leading endometriosis specialist?  What could I possibly know that he doesn't know about my body?  Well, I guess it is MY body...so I might know more than I think, but still.  Really?  Why can't I just agree?  I wish I could but I can't right now.  I'll give it some time to sink in and see what I think down the road.

He actually believes that I might already be in menopause and that my "periods" (bleeding) may be just due to adenomyosis and that my ovaries may have "already failed."  I hate the way that sounds.  Failed?  Failed at what?  They are still doing their job even if that job isn't to make babies.  (And clearly they did their job well when they gave me my three babies!)  They are still offering a slow trickle of hormones and will for the rest of my life.  Those hormones are important to my well-being and offer disease protection which have begun to be studied only recently.

One reason that I disagree with this possible diagnosis is that my periods were like clockwork just a year or so ago.  They became that way in perimenopause, and stayed that way for a few years, gradually becoming less predictable.  I haven't actually had a period since my surgery (over two months ago) and I have had the hot flashes to prove it.  Dr. Redwine suggests that I consider having my estradiol and FSH levels checked and that is a good idea.  I have a phone appointment scheduled with my doctor in two days to discuss this.

He assured me that if every bit of endometriosis was removed during laparoscopy, and my uterus and ovaries were removed vaginally, that I would be free to start hormone replacement immediately.  My concern with a local surgeon is that they may not be willing to remove all of the endometriosis because they'd have to work hard to find it among the mess of adhesions in my pelvis.  If every speck isn't removed thoroughly then hormone replacement will likely cause it to grow and cause more pain.

Dr. Redwine also has concerns about intestinal involvement of endometriosis due to my extensive history with Irritable Bowel Syndrome.  Interestingly my IBS symptoms have recently subsided along with my periods.  This is highly suggestive of endometriosis in my opinion.  All of my pelvic pain has been diminishing lately.  Maybe I'll be one of the lucky women and my endometriosis won't be an issue after menopause.  Then we can stop all of this silly talk and worry about a very major surgery.  I'm game!

What Exactly Relieved My Pain?

Today I feel quite a bit better than I did over the weekend.  My pelvic pain is down, my energy is up a bit, and my mood is good.  What did I do different? That is always the question.  I did several things different so I never know which one worked.  Yesterday I got out for a nice fall drive for awhile (always mood lifting), I ate blue corn enchildadas for lunch with lots of red chile (red chile is a known pain blocker), I took Benedryl so I could get a good night's sleep (I have a sinus thing going), and last but not least, I applied Arnica cream to my back and my abdomen before bed.  Not very scientific.  Too many variables.  But what the heck...I do feel better.  ;)

I'd like to believe it was the red chile because I'm pretty sure that I could consume that in some form just about every day.  Yum.

Natural Endometriosis Pain Relief; MSM

I had an interesting experience just before my surgery.  I was instructed to go off of all of my supplements one week before my surgery (and let's just say that I take more than a few).  After about 5 days without my supplements I was in pain. The worst of it was a deep aching sensation from my urethra to my rectum and then on deeper inside of my pelvis, but the perineum area was definitely the worst.  Even after my surgery this pain was worse than the pain from the surgery itself.  I don't think it's something I could stand to live with on a daily basis.  When I asked my doctor about it at my follow-up appointment she said that it was possible that without the supplements this is how I would feel on a daily basis.  I told her that if that was the case I'd be begging for a hysterectomy!


I suspect that the supplement that helps me the most with this particular pelvic pain is MSM or Methyl Sulphonyl Methane.  If you follow this link to Endo Resolved and scroll down on this web page to the "Alternative Treatments For Pain" section you can read about MSM and other considerations for pain relief.  I've taken the liberty to quote from the Endo Resolved website information on MSM here:

MSM for pain relief

MSM supplement for pain relief and aid healing - Methyl Sulphonyl Methane is the full name of this natural compound. The common name for this compound is Sulphur. 

MSM can help relieve pain in a variety of ways. It blocks pain messages that travel to the brain along nonmyelinated nerve fiber called C fibers. This results in relief of the deep aching pain that is characteristic of chronic conditions like Endometriosis. 

But MSM alleviates pain in other ways as well. It reduces the swelling and heat associated with inflammation, which in turn, relieves pressure on surrounding nerves and other tissues. It also relieves muscle spasm. 

MSM goes beyond mere pain relief to actually support healing of injured tissues by increasing blood flow. It also alters the cross-linkages of collagen, reducing scar tissue to promote range of motion and flexibility.

I've taken MSM for years for "bladder pain."  This was before I knew that I had endometriosis.  If I ran out of MSM I was in pain and I related it to my previous diagnosis of interstitial cystitis.  That diagnosis is likely very accurate as I do have a very sensitive bladder.  In other words the Greyhound (vodka and grapefruit juice), no matter how delicious, is just not my drink.  One sip and my bladder quickly screams at me, "Hello...we have a condition here...a little help please!"  I really don't tolerate citrus at all.  My bladder reminds me of the story of The Princess and the Pea, with my bladder being the princess herself.  With the help of MSM I can actually drink coffee!  Ask any IC patient and you'll know that is a miracle in and of itself.  I do best with a low acid organic coffee (my favorite is Dazbog) made in an AeroPress coffee maker to further reduce the amount of acid in the perfectly smooth cup of finished product.   Heavenly. 


Every once in awhile I will test a supplement by going off of it for a week or two to see if I can really tell a difference or not.  Well whoa, Nelly!  MSM is not one I need to test anymore.  I generally only take a single 1000 mg. dose per day with my morning supplements, but since my surgery I've had some lingering aching occasionally so I sometimes add another dose to my afternoon.   It would probably be reasonable to do this every day at this point in my endometriosis journey, or perhaps the week before and during my menstrual cycle.  Oh yeah...that might not work since I'm in perimenopause and never know exactly when or if I will actually have a period.


I have read that MSM is a powerful detoxifier and to increase it gradually to avoid the symptoms of detoxification including diarrhea, fatigue, and headache.   I've also read that it is most helpful when combined with Vitamin C.  I personally take a time released version of a buffered Vitamin C per my bladder's request.  Ascorbic acid + my bladder = not happy.


MSM appears to be safe as a supplement.   I am not personally recommending that you try it, but I know I'm not giving it up anytime soon.   

Back to Reality

I saw my doctor a little over 2 weeks ago.  She appeared to be rather freaked out when she saw my lengthy list of questions, but I decided that since this visit was all about ME getting answers I should be entitled to some (and to ask whatever the heck I wanted to ask in my 20 minute appointment slot).  She is calling my endometriosis stage IV and when I asked if I had "obliteration of the cul-de-sac" she unfortunately agreed with me. This often means rectal involvement that can complicate the surgery.  She recommends a complete hysterectomy and oophorectomy done only by a surgical specialist in complex pelvic surgery.  One concern I have is estrogen replacement following surgical castration should I choose to have it.  (Don't you love that term?  Can you imagine mentioning "castration: to a man and seeing his reaction, yet many women are asked to do it every day!)  If every spec of endometriosis isn't surgically removed it can reoccur when estrogen is given.  Lovely.

I just got back from a visit with my mother in Idaho.  Once I have rested up a bit (and caught up a bit) I plan to send my test results and surgical report to Dr. David Redwine in Bend, Oregon.  He charges just $125 to review endometriosis cases and give his professional opinion.  That feels like a steal right now and I plan to take full advantage of it.  I also hope that he will be able to recommend a surgeon in my area.  He is "the man" when it comes to endometriosis surgery.  I'm anxious to hear his verdict, but it will take about two weeks to hear back.  I wonder if he'll think I need a hysterectomy?  Fingers crossed that he will know another way around this.

I'm hurting today.  I'm not sure if I just overdid it by going from 4 weeks of not lifting anything over 15 lbs. to moving my own over-packed luggage around or what.  My belly button is sore and most of the discomfort is above it and to the right side and on down to that pesky right ovary.  I'm giving the homeopathic remedy ProSirona a try for pain.  http://www.prosirona.com/facts.html  I am not happy that it comes in a mineral oil base, but I do like the idea of using something more rather than less natural.  The active ingredient is calendula oil.  It's very expensive and I was not impressed with my first use 2 weeks ago, but I'm trying it again.

I haven't had a period since before my surgery and I wonder if that is part of my pain now.  I had might as well have one because I feel like I am anyway with the pain and bloating!  Now for that rest I was talking about.  Later.

Since I was a teen I've experienced painful menstruation. I started my period when I was 11. I went to the doctor for it at age 15 and was given a prescription for a mild narcotic.

Now I'm 52 years old and was just diagnosed with endometriosis 4 weeks ago tomorrow. I had classic symptoms. I also developed Chronic Fatigue Syndrome, Fibromyalgia, Irritable Bowel Syndrome, an irritable bladder,adult allergies, adult asthma, and more. I had three of the best docs in my large city over the past 20 years and my complaints about pain weren't dismissed, but were definitely misinterpreted. I believe that they were often misinterpreted because I did not experienced infertility. I have three beautiful grown children to prove it. I also am the grandmother of six. I am SO blessed.

About 6 months ago, at a routine GYN visit, my new doctor suggested that I have an ultrasound. She didn't expect to find anything, but she wanted to cover her bases because I was having some unusual bleeding (as unusual as peri-menopausal bleeding can be). The ultrasound showed a medium sized complex cyst on my right ovary (just 3 cm), but my uterus was normal. She suggested that we do another ultrasound in a couple of months. In the mean time I was having right sided hip pain that I had grown sick of. I had an MRI of the hip and they also saw the cyst. It had grown to 4.5 cm. in less than two weeks. My second ultrasound a few weeks later showed that the cyst was fairly stable but smaller at 3.5 cm. (I'd had mysterious stabbing pains that made me think it was leaking fluid between those two visits.) A third described it as "septated" and still about the same size. Unfortunately a smaller cyst on my left ovary had grown a bit and had a new "sister" cyst (oh yay). During those months I was even more fatigued than usual for the week before and during my period. My pain reached a new height during an 11 day road trip. By the end I couldn't even drive the car. I was nauseated and exhausted to boot.

I finally consulted to a laparoscopy to remove the larger cyst and to figure out what was going on in my pelvis. I also consulted to the scary and somewhat unreliable CA-125 blood screening for ovarian cancer. I'm happy to report that mine was negative! When I came out the OR from my surgery, my doctor, who is not a particularly empathetic person, said, "You must be a very brave lady." I was anxious to hear her report, but then disappointed with the telling. She was unable to remove the cysts, which were all endometriomas, due to the extensive endometriosis that was found behind my uterus. She was encouraged when she entered the abdomen because everything looked great until she looked behind the uterus. My ovaries and tubes were adhered to the posterior side with complex adhesions. She couldn't lift the ovaries out of the cul-de-sac to do the removal. Her only option was to stop the procedure or to switch to a laparotomy and she felt the risk was too great because she believed it would have taken hours to sort it all out.

Her recommendation for me is a complete hysterectomy. I don't agree with her, but I will hear her out tomorrow at my post-op appointment. In the mean time I have started transdermal natural progesterone daily to try to oppose my estrogen (which is already so low that I'm near menopause estrogen levels). I have more questions than answers and am considering getting a second opinion from Dr. David Redwine in Bend, Oregon. I'd like to see the diseased tissue removed, the adhesions removed, and the right ovary (if not both) preserved. I'd like to keep my uterus as I believe it's the key to pelvic support for my future. (And God knows my bladder could use it.)

Until my next post please keep the path to the refrigerator freezer compartment clear because you don't want to get between me and my hot flash relief.