Endometriosis

I’m sick of telling these stories so I figured I’d make a page about it and that way, the gist of everything is all in one place.

First of all, I’m sure there are a lot of you reading this who have no idea what endometriosis is and what it does, so pull up a chair and I’ll tell you. Or you could just read the Wikipedia page about it, your choice.

So “normally”, a woman has a 28 day menstrual cycle where at the beginning of it, the uterine lining, made up of tissue called “endometrium”, begins to thicken and swell in preparation for the implantation of a fertilized egg. Then she ovulates and the egg (or eggs) kinda hangs around in the fallopian tubes for a while, then it drifts into the uterus and hangs out there for a bit and then the egg expires, is absorbed by the body and since no pregnancy occurred, the uterus sheds its lining, usually around the 21st day of the woman’s menstrual cycle, and that’s when the woman has her period for anywhere from 3-7 days. (21 days for the cycle + 7 days for menstruation = 28 day menstrual cycle.)

So endometriosis is when the tissue that lines the uterus, again, called the “endometrium”, somehow gets on the OUTSIDE of the uterus and it reacts to the woman’s hormones the same way it would if it were INSIDE the uterus: it thickens, it inflames, then it bleeds and tries to shed itself which wreaks havoc inside the woman’s pelvic cavity. Endometriosis is most commonly found on the outside of the uterus, in what the call the “cul-de-sac” behind the uterus, on the fallopian tubes and the ovaries. In more severe cases, it can be in the bladder, the bowels and even on your kidneys. In EXTREMELY rare cases, endometriosis has been found in legs, chests and several times even in men.

Doctors, researchers, scientists, none of them really have any idea WHY endometriosis occurs or how the endometrium gets outside the uterus to begin with. The two main theories are “retrograde menstruation”, where the uterus fills so much with blood and endomtrial tissue that it backs up into the fallopian tubes, which are open-ended and that’s how the endometrium ends up on the outside of the uterus. The other main theory is that it happens in the womb and that girls are simply born with it. I personally don’t have an opinion on either of these theories as both seem perfectly feasible to me.

Now the tricky thing about endometrial tissue is that it’s regenerative. One microscopic piece of this tissue can develop into what’s known as a “chocolate cyst” or an endometrioma, depending on who you’re talking to, which fills with blood in reaction to the woman’s hormones, then it’ll burst and when it bursts it’s dispersing MORE microscopic endometrial tissue into the pelvic cavity, which then adheres to…wherever..and the cycle begins again.

When endometriosis is reacting to female hormones (estrogen), as I said, it acts exactly like the endometrium inside the uterus so the times when the disease is at its worse is usually during ovulation and menstruation. What happens is that for one, you’ve got endometriomas bursting all over the place which motherfucking HURTS and then you have all of this endometrial tissue bleeding into your pelvic cavity, filling it up and causing inflammation which also MOTHERFUCKING HURTS.

The ONLY way to PROPERLY diagnose the disease is with laparoscopic surgery so if you go to a doctor or ER complaining of pelvic pain and they tell you you have endometriosis THEY DON’T KNOW WHAT THE FUCK THEY ARE TALKING ABOUT SO GET A SECOND OPINION BY SOMEONE WHO ISN’T AN IDIOT. Endometriosis does NOT show up on an ultrasound or MRI. If you’ve had an endometrioma burst and you have an ultrasound, the ultrasound MAY pick up markers that the event happened (by seeing extra blood or inflammation in one area, generally on an ovary)  but they cannot tel a regular cyst rupturing from an endometrioma rupturing. Unless it’s extremely severe endometriosis CANNOT be felt by a manual pelvic or rectal exam. I’m going to say this again because a lot of women tell me their doctor told them they had endometriosis and when I ask them “what stage?” they have no idea what I’m talking about BECAUSE THEY NEVER HAD SURGERY TO GET A PROPER DIAGNOSIS. Pelvic pain can be an indicator of many many things and endometriosis seems to be a lot of doctors’ favourite scapegoats. Now if you’re infertile AND having pelvic pain AND pain during sex, then yeah, you probably have endometriosis, but you should still have surgery to confirm it and treat it before trying some of the other methods of “curing” the disease. (There is no cure for the disease, just treatments to curb its growth or surgery to remove as much of the tissue as possible. Many women, like myself, need multiple surgeries over their lifetimes to stay on top of the disease and even then, it’s still not a cure.)

So that’s what endometriosis is, in a nutshell. How is it treated? As I said, usually surgery is the first treatment because while they’ve got the scope in there to diagnose you, they might as well get rid of as much of the endometriosis as they can see. There are two ways of doing this: 1) cauterization, which is using a heat tool to burn the endometriomas off. The problem with cauterization is that when you burn the tissue, it turns black and guess what colour a chocolate cyst is? That’s right dark brown to black. So with cauterization, the doctor can’t be as thorough and remove as much as option 2) laser surgery. Not every hospital is equipped to do laser surgery but it is the best way to remove endometriosis because it vapourizes the tissue and when the tissue is vapourized all that’s left is healthy tissue so the  surgeon can see everything and can remove as much of the disease as is visible.

Other treatments are hormonal and they usually happen after surgery: 1) they put you on the birth control pill non-stop for a year, which theoretically makes the disease dormant (because birth control pills trick the body into thinking it’s pregnant and endometriosis supposedly goes dormant during pregnancy because it’s not being fed the hormones that cause it to spread and flare up). If the disease is dormant, that means it’s not getting any worse, it’s not spreading, it’s not causing inflammation and you should theoretically be “better”. This doesn’t work for everyone and it certainly doesn’t/didn’t work for me. The other hormonal treatment is a drug called Lupron. (There’s another called Danazol, but doctors seem to prefer Lupron.) Lupron, in a nutshell, puts your body into a temporary state of menopause under the same theory as putting you on birth control non-stop for a year, except in the opposite direction. Theoretically, Lupron should cause your endometriosis to shrivel up and die, basically, because it’s being starved of the hormones that cause it to grow and it’s being bathed in hormones that tel the body “hey, you’re old, stop bleeding” (even if you’re only 22 or whatever). The treatment for Lupron is a needle once a month for 6 months. Before going this route, do some digging on the internet and realy try to make an informed decision. With Lupron you ARE going through menopause and you will have ALL of the side effects of menopause from hot flashes to voice deepening to a mustache PLUS the added bonus of accelerated bone density loss and TONS of other happy things that the doctors don’t like to tell you about before saying “this is your only hope”.  For example, that the “joint pain” there on that long list of side effects? May become PERMANENT and more painful than the endometriosis itself.

I have stage IV endometriosis and I will not put Lupron in my body. Having said that, I have read case studies where it has been helpful for women with less severe endometriosis HOWEVER I’ve been talking to women for half my lifetime about this disease and not one of them has ever said Lupron helped them. I’m not exactly ANTI-Lupron (except for myself), I think it has its uses, but I also think doctors sugar-coat its side effects and don’t inform their patients of everything and I REALLY REALLY REALLY think it should be used as an absolute last resort. I’ve had 5 laparoscopies since I was 16 (more about that in a minute, I’m 31 as of this writing) and I would have 5 more surgeries before ever putting Lupron in my body. Especially since, if the birth control pill doesn’t help me and the disease didn’t go dormant when I was pregnant with either child, what on Earth would make me think that pseudo-menopause would do anything? Why put my body through that kind of hell, even if it is only 6 months, and risk possibly permanent bone and joint pain for the rest of my life – adding pain to pain – for a “cure” that probably won’t work just as the other hormonal treatment didn’t work? Or how about the fact that it could affect my bone density to the point of causing osteoporosis? At least with surgery I know they’re getting rid of the tissue, with Lupron they have no idea what it’s going to do or if it’s going to work. NO FUCKING THANK YOU.

Now that you know what endometriosis is, what it does and how it’s treated, I’ll tell you my story.

I got my first period when I was 9, except I didn’t know it was my first period because I didn’t know what periods were and I thought I was dying. I would have menstrual pain for the next few years, but I wouldn’t have an actual period again until I was about 11 and even then it only happened a few times that year. But the pain happened every month, although I didn’t know enough to look for a pattern to know that it was happening every month.

I would lay in bed crying because I was in pain and my mother would tell me I was being a drama queen. She took me to the doctor anyway, a few times and I even drew circles on my body in advance of the visit to show him where the pain was and all he did was rule out a bladder infection or appendicitis and prescribe Tylenol 3’s. At age 12.

My periods never really regulated themselves until I as about 14 and I kept going back to the doctor complaining of pain, but as I got older I became better at articulating the pain and I noticed the pattern and when I was 16, he told me he suspected endometriosis (which I will now just refer to as “endo” because it’s easier), referred me to a gyno and that gyno performed my first laparoscopy with cauterization that year. She diagnosed me as stage III and removed “about 40%” of the endometriosis because that’s all the time she had scheduled the OR for.

Exactly one year later, when I was 17, she repeated the surgery and was surprised to find that everything she’d removed the year prior had grown back and then some. This time she removed, again by cauterization, about 65% of what she could see and after the surgery she put me on the birth control pill non-stop for a year. So I didn’t have a period for that entire year. However, I still had pain, usually around the times I SHOULD have been ovulating or SHOULD have been menstruating but because of the pill I wasn’t. This is actually really common, I read much later, but thought it was weird at the time.

Her diagnosis after this 2nd surgery was still stage III and after my year on the pill and finding out that I was still in pain, she said to me very very quietly that if I wanted a future with children, I should think about starting as early as possible because this disease causes infertility like whoa. She said that even at that stage, the chances of me becoming pregnant were very slim but that pregnancy can often “cure” the disease. I took that to mean that I should start right then and there. I had no idea what I wanted out of life, what I wanted to be when I grew up or any of the above, but I knew I anted to be a mother. And I was living on my own at the time, or rather, I was renting a room from my longterm boyfriend’s parents and after talking with him about it we decided that I would stay off the birth control pill and we would stop using condoms and we would not actively TRY to get pregnant, but if it happened we would be happy about it.

Almost a year later, when I was 18, I conceived Madison. I had her when I was 19. But a through the pregnancy I was still in pain, the disease hadn’t made me as infertile as the gyno suggested apparently, but it sure as hell didn’t “cure” the disease  or make it dormant.

Between the ages of 19-22, I just dealt with the pain with the Tylenol 3’s and Naproxen (an anti-inflammatory) my regular doctor prescribed me for it and I stayed on the pill, although not non-stop.

When I was 22, the pain was getting pretty bad, especially during sex (my boyfriend at the time was…well endowed and hurt me), so I went back to the gyno and she did laparoscopy #3, cauterizing as much of the disease as she could (I didn’t get a percent this time) but she said that even doing her best, I was still stage III and she said she focused mostly around my ovaries and fallopian tubes to protect my fertility. Being an OBGYN who deals with infertile couples I guess infertility was one of her primary concerns. She told me that if possible, I should stat thinking about child #2 because my next surgery would have to be a hysterectomy. If I wouldn’t try the Danazol (same as Lupron, pseudo-menopause drug), which I wouldn’t, then my last hope was to have my second child and then have a hysterectomy. That was in August of 2001.

Well, my boyfriend at the time and I were coming to the end of our relationship and we both pretty much knew that. I knew I wouldn’t be having a baby with this man but I didn’t want more children so I didn’t want to rush out and have a hysterectomy either.

My boyfriend and I broke up shortly after 9/11 happened because I wasn’t moving to the US after something like that, when things were still so uncertain, and he wasn’t moving to Canada, and suddenly everything we’d been planing for the past 3 years went up n smoke like the twin towers themselves and that caused a lot of strain. There was also the fact that I was only 22 and he was 28-ish and we were both in very different places in our lives. He had a career, I was in college. He wanted to settle down, I wanted to party. Plus, I hadn’t been single for more than 2 weeks since I turned 15 and basically, I wanted to see what casual sex was like. So we broke up. It was painful and sad and whatever but we’re still friends and talk all the time.

This is when Blake happened. I’d met Blake in Ohio at a Scratching Post show I think at the end of July and liked him immediately. Then I had my surgery. Then Chris & I broke up. Then I had some casual sex. Then Blake & I started going out, I think officially, in October. By December we’d decided to get married and have a baby, not necessarily in that order.

Father’s Day 2002 I found out I was pregnant with Wes, which was a really hard pregnancy due to a REALLY bad kidney infection and the fact that my endometriosis did NOT stay dormant in the slightest. During that time I was spending a lot of time on the internet, maintaining my site and being a camgirl, and that’s when I started researching endometriosis in-depth. I’d read every book that had any mention of the disease in the libraries of two towns already but the internet gave me more firsthand experiences and also directed me to The Endometriois Association.

The Endometriosis Association flat out said that being pregnant or having a hysterectomy was not a cure for the disease like so many doctors had been telling their patients for several years. I read every word of their website and decided against hysterectomy, especially because the type of hysterectomy recommended to me by my gyno was a FULL hysterectomy which meant taking my ovaries and fallopian tubes, which would put me in full swing menopause at the age of 23, 20+ years before it was supposed to happen gradually and naturally. There’s something they would do called “add back therapy” where they give women hormones to counteract the side effects of menopause but those would be the same hormones they would be taking my ovaries out so my body would STOP producing them, so to me that seemed rather counter-productive. (They now do add back therapy when they give you Lupron too, which seems just as stupid if you ask me.)

Going through menopause 20+ years before you’re supposed to has some serious health risks to consider, the most important of which is bone density loss. Bone density loss is something that just happens to women as their estrogen levels fall, which is why osteoporosis rears its ugly head in postmenopausal women. So if bone density loss BEGINS when estrogen levels fall in women who are over 40 years old and it can develop into osteoporosis quite quickly, if your estrogen levels fall 20 years  before they’re supposed to and not GRADUALLY but SUDDENLY, osteoporosis can become a VERY REAL PROBLEM. Long story short: hysterectomy is not a cure and can make the problem much much worse, by complicating the disease itself or by adding another, in my opinion MUCH WORSE, disease on top of it.

So based on all of the above, I decided a long time ago that hysterectomy would never happen. I survive the pain with Tylenol 3’s again and Naproxen from my regular doctor and just accept that it’s pain management from that point on.

Fast forward almost a decade to when I’m almost 30. The pain has become unbearable and since we had moved to a new town and I had a new doctor I knew better than to ask for a prescription for heavy narcotics, so I subsisted on over the counter Tylenol 1’s in mass quantities for several years, along with heat pads and the highest strength ibuprofen the pharmacy sold. When I told my new doctor that I had really bad endometriosis, he said “how do you know?” to which I replied, “well because I’ve had 3 surgeries for it”, “well who did these surgeries?” he asked, so I told him and that was literally the end of the conversation. He gave me a prescription for the lowest dose of Naproxen there is and sent me on my way. I was used to this, though. It took me many many years to get my other doctor to take my pain seriously and I knew damn well it was going to take just as long to get this one to take my pain seriously too. I asked them to transfer my medical file from my old doctor to my new doctor and I signed the form for that to happen but it didn’t happen. So I just got frustrated and sat in my little house in pain until I simply couldn’t anymore.

In January of 2009 my “new” doctor sent me to a gyno in another town and in March that gyno RECONFIRMED (which totally wasn’t even necessary but whatever) by laparoscopy that yes, I have endometriosis and yes, it’s pretty bad so off they send me to a gyno in Toronto who’s apparently the greatest endo specialist in the province. This specialist will do laser surgery and will remove as much of the endo as he can see, or at least this is what I’m told. A 2 hour laparoscopy is scheduled at a hospital in Toronto for August 4th.

Surgery happens on August 4th, 2009 and it’s the biggest surgery I’ve had to date because instead of 2 or 3 little incisions like most laparoscopies, there’s going to be 5 or 6 they said. Well the 2 hour surgery they scheduled turned into a 4 hour surgery because the gyno who did my laparoscopy in March really underrepresented how bad things were and this specialist wanted to get as much as possible. They not only vapourized all of the endometriosis they could see on my uterus, cul-de-sac, ovaries and fallopian tubes, they also dissected my bladders and bowels and vapourized the endo there as well. Here is the post-op report. Another thing this doctor did, which they claim I was made aware of prior to the surgery but I have zero recollection of that, is that he severed some nerves somewhere around my uterus (??) so that if I still had pain after the surgery, it would be lessened. They mention that in the post-op report but I swear I had no knowledge of it prior to the surgery. Not that I particularly care or anything, it just would have been nice if that part would have been explained beforehand.

After the surgery in August, I went back (I think) 6 weeks later and they put me on the birth control pill for 3 months at a time, stop for 7 days to have a period, rinse, repeat for a year. Sounds pretty simple, right? Well it hasn’t been. I take 2 months worth of pills and I don’t bleed, but I still have pain when I should be ovulating or menstruating which makes absolutely no logical sense and then on the 3rd month of pills, I spend the entire month bleeding and in pain. The pain is LESS than it was before, but it’s still pain. I took my post-op report to my regular doctor and told him it was time to discuss pain management. I am now taking 20omg codeine contin/day (it’s time released for 12 hours, I take it twice a day) and 1500mg of Naproxen per day. On my 3rd month of pills, I have a prescription for 150 Tylenol 3’s to last me the month. I definitely have good days and bad days but at least I now have a doctor taking my pain seriously and with the drugs the pain is mostly manageable. Some days? I can even dance.

So that’s where I am right now. Today is August 7th, 2010 and my post-post-op appointment with the endo specialist should be happening sometime in the fall. I know damn well he’s going to suggest Lupron and I know GODAMNED WELL that I will be saying no. I have no idea if it’s better to be on the birth control pill normally and have a week long period every month (that will be painful) or if it’s better to not have a period for 2 months and be relatively pain-free as long as I take my drugs but then have a month of bleeding and more pain (and more drugs). It’s kind of the same thing no matter how you slice it, I think. I guess it’s going to come down to what’s going to slow down the growth of the disease and I know they’ll think that being on the pill the way I am now (3 months on/one week off) will do just that, but history has proven otherwise. Either way, it boils down to pain management for the time being and another surgery in a few years to clean up what’s grown back. Then, menopause, which is pretty unpredictable as far as endometriosis is concerned because everyone’s different.

And that’s all I have to say about endometriosis at the moment, but I do blog about it a lot under the “endometriosis” category. Or maybe “blogging” about it isn’t so much what I do, BITCHING about it is probably more accurate…but dammit, it’s my site and I’ve earned that right, so whatever.