As a young woman you don’t give much thought to menopause except to cringe at the dire warnings. You know its coming but you don’t know exactly how or when and it’s not like you can stop it. There’s a vague concern that you might be one of THOSE women who have to undergo a hysterectomy. But why fret over the distant future – just keep your head down and hope for the best. That’s what most of us do.

But those years creep up faster than you might think – especially since we’re never really sure when menopause will begin. And one day – many years before you should be starting menopause (at least that’s what most of us think) – weird things start to happen to you (not to everybody – but almost). Your period is late and you’re pretty sure you’re not pregnant (please God). Then, when it finally comes you think you’re hemorrhaging – most of us even consider a trip to the emergency room – yeah, it’s that bad. And that “heavy flow” – more like “white water rapids” – doesn’t let up for two weeks. After a few months of this you ask yourself, do I need a hysterectomy? And most doctors will tell you that you have entered an endearing little phase that they like to call perimenopause (no that’s not a typo – it is peri – not pre). I like to define perimenopause as: a time when incredibly disgusting, totally uncomfortable, unbelievably embarrassing and often scary shit happens to you – ever pass a blood clot the size of a rice crispy bar? You have lost all control over your reproductive organs and your doctor just smiles and tells you that you’re entering a “beautiful new phase of life.” (This is probably a good place to warn you that most doctors DO press charges for assault – and you rarely get an all woman jury.)

But seriously, they know what to do about all this, right? Yeah, it’s called experiment. Try getting off the pill, try getting on the pill (I don’t know about you but every time I go on or off the pill I gain 15 lbs), try estrogen and/or progesterone, maybe a d&c (dilation & curettage – they go into the uterus and scrape around and pull out some gunk and hope that will make things better). They’re willing to let you experiment quite a bit. Some of these things help – for a time. In my case I got off the pill and on estrogen and progesterone cream. Things got much better for 4 – 6 months, because I was getting the precise amount of hormones that my body needed, and then things started to deteriorate again. So every 4 – 6 months I would adjust my levels of estrogen and progesterone to get another 4 – 6 months of relief (minor alterations are possible through transdermal delivery – usually a cream applied to the skin). Some women can keep juggling hormones until their body goes into menopause naturally. Others, like me, really start to question whether or not a hysterectomy is necessary. No doctor ever suggested that I needed a hysterectomy – but I started wondering.

In the midst of all the fun and games I had also been losing some weight – deliberately – through strict diet and exercise. After about a year on this regimen I started to notice that, although my whole body was shrinking, my belly was beginning to grow. And I knew that couldn’t be right (I think it’s interesting to note that this abnormal swelling was never a big deal to the doctors – it wasn’t until I started complaining of pain – about six months later – that they began to take my complaints seriously). A while back I had been diagnosed as having a very small fibroid tumor in my uterus so I just assumed that was beginning to cause some problems. I talked to my internist and he was perplexed. He said my small fibroid couldn’t be causing the symptoms I was describing. But since nothing else was wrong – I felt it had to be that. I had also started to notice that the gut wrenching menstrual cramps of my youth had begun to return – but I had assumed that was a byproduct of all the shifting hormonal activity so I didn’t really factor it in with the rest of my symptoms. To his credit, my doctor said that the whole thing was way out of his league and he recommended that I pay a visit to a gynecologist he knew. And that’s when I met the sadistic misogynist. I have heard that pyromaniacs sometimes become firemen just so that they can be close to fires. I’ve seen a similar phenomenon in the world of gynecology and miraculously, I’m still here to talk about it.

Right from the start he was condescending and dismissive. Everything I said was ridiculous and apparently boring. He grilled me about every little detail in my life yet managed to convey that it was painful for him to hear me talk. He examined me and the pain was so unbearably intense that it was a struggle to keep from screaming out. Actually, I think the only thing that kept me silent was the nagging suspicion that a shriek out of me would have been the highlight of his week. For a moment visions of Dr. Mengele’s lab flashed through my head.

And his verdict? I was an overweight, impatient perimenopausal nuisance who really had nothing wrong with her but wanted surgery because she was feeling inconvenienced. But he did manage to convey his sense that we could “probably” get the insurance company to agree to surgery with a little due diligence on his part. So he wrote me a prescription for water pills, made a follow up appointment and sent me on my way. Really? Water pills? Are you freakin’ kidding me!!! I left his office seething. I got home and told Joe, my husband, how much I hated this jerk. How he had absolutely no redeeming qualities. And how he was probably going to perform a hysterectomy on me. And Joe had the nerve to question my reasoning. You hate him and you think he’s an idiot yet you’re going to let him perform surgery on you? Yes.

My Mother jumped on Joe’s bandwagon. You can’t let someone you hate perform surgery on you. But I stuck to my guns. It was my decision, not theirs. And I held the line for a good six months – and one more visit to the SM (that’s sadistic misogynist for those of you not following closely).

So there I was, back with old SM for my pre-surgical follow up. And if I thought the exam was torture the last time – well it was – this time was no better. Just thinking about it makes me break out in a sweat (but in all fairness when you’re in menopause opening a stick of gum can give you a sweat mustache).

This time, although I was clearly no more intelligent than last time in his estimation, he’d come up with a new term for my uterus – it was congested. He made out that a congested uterus was the term they give women who are spoiled and wimpy and need an excuse to get a surgeon to give them an easy way out (I’ve since researched the congested uterus and it’s a pretty serious condition concerning blood vessels, etc. – I guess I’m glad I didn’t know that at the time – I would have been really worried! And needlessly since it turns out that’s not what I had). He also told me that he could tell from my uterus that I had about a 30% chance of having a vaginal hysterectomy. So he’d try to get the uterus out without a full incision – but chances are I would wake up from surgery with a full incision. Now it was all done but the scheduling of the surgery. So I limped/cramped back to my car – yes it was that painful after his exam – and took myself home.

Once home my husband resumed his gentle campaign to get me to find another surgeon. He thought it made sense to find someone skilled in laparoscopy – the SM didn’t have a clue about it – and it could significantly cut down on incision size and, therefore, recovery time. Joe had done some research and found a world-class surgeon at the University of Illinois in Chicago. And that’s when he really backed me up against a wall – why on earth would I let this other horrible man who I detested perform surgery on me? Up until that point I really couldn’t have pinpointed my own reasoning but that’s when it hit me like a bolt – SM’s examinations hurt so much I was afraid to start over and have to be examined by someone else. Holy crap! Is that the dumbest reason on earth to let someone operate on you! Thank god my husband can be a pushy pain in the ass. It was time to contact his surgeon, Dr. Brill, in Chicago.

And Dr. Brill was wonderful. I contacted him by e-mail and sent my records up to his office. I spoke to him by phone once – he said that my uterus was not congested – his obvious disdain for SM gave me no end of satisfaction. He would take my case. Before I had a chance to meet Dr. Brill in person my symptoms jumped to a new level. I was now having bone crushing cramps whether or not I had my period. At one out-of-town conference in mid-October I was convinced I’d have to call 911 in the middle of the night. There really was something very wrong. So Joe and I flew to Chicago on the Tuesday before Halloween (three days before surgery) and I met Dr. Brill. He was kind and considerate and asked a lot of caring questions. He commented that he could try to perform a vaginal hysterectomy but that laparoscopy would be better in the event that I had endometriosis. I assured him that I’d been told that I did NOT have endometriosis. He gently made his suggestion again – and I made my decision to put myself into his hands – go ahead and use laparoscopy. And then – oh god – the moment I’d dreaded. He had to perform an internal. But to my complete astonishment, his exam did not hurt at all. Not at all. I still don’t know – was SM completely incompetent or was he hurting me deliberately?

I was scheduled for a two-hour operation that Friday morning. Once things got started a simple vaginal hysterectomy turned into a 5 ½ hour ordeal in which they removed the damage caused by stage four endometriosis and separated the organs that had been glued together by the blood that had pooled in my abdominal cavity. After the surgery Dr. Brill commented that “I don’t think you know how sick you really were.” He also told me that, if someone had tried to operate vaginally, it is very possible they would have killed me – because many of my abdominal organs (bowels, bladder, liver, etc) were glued together and attached to my uterus. They had to be delicately separated and cleaned. My right ovary had been imbedded in the wall of my bowel. In fact, once he realized the extent of the disease he stopped surgery and called in a bowel surgeon to direct him through the delicate procedure. Apparently the greatest risk is perforation of the bowel while separating and scraping organs.

Now most of you will never go through an ordeal of anywhere near this magnitude – even if you do eventually have a hysterectomy. But I think the story is worth telling. Because I came through alive and thriving because of three things, 1/Trusting my instincts, 2/Trusting those around me who really care and 3/Getting the best people to take care of me. And even though you’ll probably never go through anything like this – you’ll know someone who does. You might well ask, how has your health been post surgery – and that’s a topic for another blog.