I was diagnosed with endo at 17 (in 1999), after 2 long years of trying to convince my doctor that the unbelievable pain and beyond excessive bleeding I was experiencing every month wasn’t “just bad cramps”- which was his diagnosis. (oh, the joys of having a male GYN :grief:). He finally relented (I say “relented,” because I don’t think he actually believed that things were as bad as I was telling him); and referred me to a fertility specialist.
Thankfully, even though that GYN was a little more than slow on the uptake in terms of listening to his patients; the specialist he referred me to was just A++ incredible: Dr. DiMattina of Dominion Fertility in Arlington, VA. At the time of my first surgery (in 2000), he was the only doctor in the DC/Metro area (and if I remember correctly, the only one [or one of very few] on the East coast) who was certified to utilize the specific laser needed to treat my “personal brand” of endometriosis… I think it was the Nd:YAG Laser, which was the preferred choice for me specifically (as opposed to the C02 or KTP-Argon lasers), due to what the pre-surgical sonograms/ultrasounds were showing- large, deep, and extensive lesions; as well as some ovarian cysts.
Both surgeries were diagnostic hysteroscopies/laparoscopies; with the potential of becoming operative depending on what the laparoscope revealed. During both surgeries, the scope confirmed the presence of the endo lesions; and in both surgeries, the lesions were ablated by laser.
During the first surgery (when I was 18), large endometriosis lesions were found on my right ovary (which incidentally was about half the size of my left one), inside my fallopian tubes, and on my pelvic floor.
During the second surgery (when I was 20), the endometriosis lesions were found not only on my pelvic floor and all the usual places inside of my uterus; but they were also found on my cervix, outside of my small intestine, and some other areas that I can’t quite remember (the term ‘cul-de-sac’ keeps coming to mind, but I don’t remember how that was related… I guess I should take a look at an anatomy chart- I don’t even know what I have going on in there!).
Anyway, by the time I had my 2nd surgery, the symptoms came back not even 3 months later; which was totally disheartening (as I’m sure all of you can understand). I was good for over 2 years after my first surgery; so I was honestly really surprised at how quickly the endo took up residence again. Dr. D told me that he was sorry that it reoccured so quickly; but that unfortunately, he couldn’t perform yet another procedure on me so close to the previous surgery… I wasn’t even 100% healed yet from that one.
So he explained to me that my options were: Lupron (and he did detail the side effects; which I found absolutely horrifying); or continuous monophase birth control therapy, which meant only having a period every 3 months.
I begged for a hysterectomy since they had already told me that I couldn’t have kids due to the scar tissue in my fallopian tubes; and I didn’t/don’t want any anyway. But of course he made it very clear that that option was off the table (and honestly, no doctor would do that for a 18-19-20 year old female)… but really, now that I’m older and understand the implications of having a full hysterectomy (having to take HRT, etc.); and have learned the side effects of the HRT that would be necessary to take had I actually had a hysterectomy, I’m glad I didn’t get it done. I now feel like the known HRT side effects (and even the suspected ones) would be just as bad, if not worse in some ways, than the known side effects of the Lupron; and I don’t want to deal with that at 30… or ever, if I can help it. So in hindsight, I am glad that he refused to perform a hysterectomy on me. But man, when you’re going through it- feeling all of that pain and agony… you lay there, curled up in a ball, wishing and praying like hell that your entire uterus would just push itself out, you know?
Though he kept pushing the Lupron, because back then, Lupron was the newest, latest, “greatest” endo treatment; and was considered to be the closest thing to a ‘cure’ (albeit only a temporary one). I said, “hell to the no” to Lupron, and went with the continuous BC option. So he started me on Yasmin, which was later switched to Yaz; which is (at least for me) the best BC I had ever been on- monophase and low dose, which keeps my moods in check; extremely effective at reducing cramps as well as the length of my periods (to go from 7-8 days to 2-4 was like an amazing gift), is effective in the management of PMDD symptoms (which I do experience… or did experience); and on top of all of those benefits, it also VERY effectively managed to keep the endo from getting worse.
Although lately I’ve been experiencing the endo symptoms again and could probably use another surgery; the BC option has kept the endo in check and therefore, my symptoms at bay, for over 10 years (I had my last surgery at 20, and I’m almost 31 now).
I know that so many of you have/had it worse than I did; but I can’t recommend looking into the continual birth control option enough, if its not something you’ve considered or done before.
Before I was diagnosed with endometriosis, I would go through a Super-Plus in about 25 minutes, and the pain would be so unbearable that at times it would make me faint. When the pain didn’t make me pass out, I was popping up to 12 Advil pills at a time (I know, I know… but the pain- I was so desperate). And even though the Advil didn’t help much in taking away the pain; taking that much at one time did make me sleepy enough to at least conk out for a few hours to escape the torture for just a little while, which I was always grateful for. I remember every time I’d lay down during for one of those ‘Advil Naps,’ I’d send up a prayer/make a wish that I’d wake up and all of these problems would be gone.
To those of you who are struggling with endo, my heart goes out to every single one of you; and my thoughts as well. I do know your pain, your frustration- everything. And I’m here if any of you ever want to talk; or just need someone who understands and has been there, to listen. I’m so sorry there are so many of you going through this horrible, horrible disorder.
<3
