I have such a specific situation, and no actual gynecologist due to switching insurances (I've been seeing whoever's available first/the soonest at whatever clinic for the last several months) that I figured I'd just go ahead and explain my situation and ask my questions. I broke this post into sections so it's hopefully easier to read.
I had the Skyla IUD inserted on September 17, 2020, with my pre-consult on September 15. I wasn't even looking for an IUD necessarily—I'd gone in because I had new and persisting menstrual issues that hadn't cleared with me taking Nora-BE.
A little detour to describe my particular period problems: I started my period when I was 10 years old, which is considered old in my family. My first period lasted about twenty days, but it wasn't particularly heavy yet—the start of every period afterwards was exactly 31 days apart, mostly to the hour, and bleeding lasted 9 to 16 days. I would have to change my pad every 30ish minutes the first four days, and then every hour or two until the bleeding stopped. Cramps were always super painful and near-constant, sometimes to the point of throwing up, but my doctors didn't want to put me on birth control at that age. Instead I was told to take three ibuprofen every four hours, and prescribed iron pills for my worsening anemia. This was my norm until I turned 14, and my periods suddenly became irregular—I had a pap smear, it was normal, and I was finally prescribed different birth controls until one didn't make me vomit profusely. That birth control ended up being Nora-BE, which I was on for about two years before I stopped for reasons I honestly can't remember. My periods were never really regular again, however, and I've just learned to live with it.
I'm 19 now, and started Nora-BE again in mid-2020 because I began developing ovarian cysts that were bursting and sending me to the hospital. That and I am now in a relationship with a man, so I want protection. Another big reason for continuing Nora-BE was that I was recently diagnosed with Factor V Leiden, a blood clotting disorder that rules out all medications with estrogen.
I went into the doctor's on September 15 for complaints about worsening cramps (impressive, I know), pain and nausea during/after sex, uterine pain when (TMI) straining to go to the bathroom (TMI), and generalized, constant non-uterine abdominal pain when on my period. My mom and her mom both had endometriosis—my mom required a full hysterectomy and removal of part of her bladder and intestines due to tissue growth, as well as blood transfusions because she hemorrhaged. My grandmother wasn't ever able to get real treatment other than a diagnosis, and a full hysterectomy when she was diagnosed with ovarian cancer and it was discovered (surprise) her endometriosis was significant.
The doctor I saw on the 15th, predictably, didn't want to diagnose or test me for endo because, in his eyes, I was too young for invasive surgery (false—I've had them in the past) and my symptoms weren't "clinically significant." Even when I pointed out it's been almost 10 years with no real improvement in symptoms, he just suggested getting the Skyla IUD and told me it would be the most I'd get from the appointment. I just agreed to try the IUD, since I had and have no other options at this time.
Insertion didn't even hurt, and I had been bleeding for five days at that point. The thing is, the bleeding hasn't stopped—it's been 40 days as of October 27, and every time I change my pad I'm greeted with mostly dark brownish-black clots. It literally looks like my insides are just sloughing off, more so than I'm menstruating. The level of bleeding has fluctuated randomly from what I assume is spotting (light for me, at least) to my regular heaviness. My cramps are somehow worse, but they don't make me nauseous at least, and I haven't thrown up because of them.
I'm still taking Nora-BE due to my ovarian cysts, so it would be great if I could stop bleeding to actually enjoy the benefits of both birth controls. I'm still experiencing the same symptoms as before, except I'm not sure if the pain during/after sex is still applicable because, well... I'm not into that when bleeding.
I've got some other diagnoses that are potentially relevant: I have a fairly severe, but not total IgA deficiency, IBS-C, and the previously mentioned Factor V Leiden clotting disorder. I have a history of anemia, as well as dysautonomia. Medication-wise, I take Nora-BE (mentioned), venlafaxine for dysthymia, and am currently taking doxycycline for a staphylococcus UTI. I am not pregnant. For the love of all possible gods I'm definitely not pregnant, as I not only haven't had sex for like... two months now, but I've taken at least eleven pregnancy tests in that time via clinicians not communicating and wanting to "rule it out" when I come in for other complaints. I was tested for the dreaded C-virus (not because I had symptoms, but because my campus essentially requires it) and was negative. I am in the United States.
My main question is this: is persistent bleeding actually normal with the Skyla IUD? When I call the advice line, they tell me to ask a gynecologist, who, if they get back to me, say that "irregular bleeding is a normal side effect." Not one has addressed the fact I'm asking about persistent, non-stop bleeding, and I don't have time for an office visit because I'm currently dealing with university chaos and moving 1000 miles. That and my insurance is unstable because of the switching process (I don't know if I'm covered until January 1st as of right now).
Other questions include: are other IUDs better for people with menstrual symptoms/histories like mine? Should I even have an IUD? Is it worth it to stick the symptoms out and see if they improve within the 6 month period after insertion?
Thank you, and sorry for the long post.
I had the Skyla IUD inserted on September 17, 2020, with my pre-consult on September 15. I wasn't even looking for an IUD necessarily—I'd gone in because I had new and persisting menstrual issues that hadn't cleared with me taking Nora-BE.
A little detour to describe my particular period problems: I started my period when I was 10 years old, which is considered old in my family. My first period lasted about twenty days, but it wasn't particularly heavy yet—the start of every period afterwards was exactly 31 days apart, mostly to the hour, and bleeding lasted 9 to 16 days. I would have to change my pad every 30ish minutes the first four days, and then every hour or two until the bleeding stopped. Cramps were always super painful and near-constant, sometimes to the point of throwing up, but my doctors didn't want to put me on birth control at that age. Instead I was told to take three ibuprofen every four hours, and prescribed iron pills for my worsening anemia. This was my norm until I turned 14, and my periods suddenly became irregular—I had a pap smear, it was normal, and I was finally prescribed different birth controls until one didn't make me vomit profusely. That birth control ended up being Nora-BE, which I was on for about two years before I stopped for reasons I honestly can't remember. My periods were never really regular again, however, and I've just learned to live with it.
I'm 19 now, and started Nora-BE again in mid-2020 because I began developing ovarian cysts that were bursting and sending me to the hospital. That and I am now in a relationship with a man, so I want protection. Another big reason for continuing Nora-BE was that I was recently diagnosed with Factor V Leiden, a blood clotting disorder that rules out all medications with estrogen.
I went into the doctor's on September 15 for complaints about worsening cramps (impressive, I know), pain and nausea during/after sex, uterine pain when (TMI) straining to go to the bathroom (TMI), and generalized, constant non-uterine abdominal pain when on my period. My mom and her mom both had endometriosis—my mom required a full hysterectomy and removal of part of her bladder and intestines due to tissue growth, as well as blood transfusions because she hemorrhaged. My grandmother wasn't ever able to get real treatment other than a diagnosis, and a full hysterectomy when she was diagnosed with ovarian cancer and it was discovered (surprise) her endometriosis was significant.
The doctor I saw on the 15th, predictably, didn't want to diagnose or test me for endo because, in his eyes, I was too young for invasive surgery (false—I've had them in the past) and my symptoms weren't "clinically significant." Even when I pointed out it's been almost 10 years with no real improvement in symptoms, he just suggested getting the Skyla IUD and told me it would be the most I'd get from the appointment. I just agreed to try the IUD, since I had and have no other options at this time.
Insertion didn't even hurt, and I had been bleeding for five days at that point. The thing is, the bleeding hasn't stopped—it's been 40 days as of October 27, and every time I change my pad I'm greeted with mostly dark brownish-black clots. It literally looks like my insides are just sloughing off, more so than I'm menstruating. The level of bleeding has fluctuated randomly from what I assume is spotting (light for me, at least) to my regular heaviness. My cramps are somehow worse, but they don't make me nauseous at least, and I haven't thrown up because of them.
I'm still taking Nora-BE due to my ovarian cysts, so it would be great if I could stop bleeding to actually enjoy the benefits of both birth controls. I'm still experiencing the same symptoms as before, except I'm not sure if the pain during/after sex is still applicable because, well... I'm not into that when bleeding.
I've got some other diagnoses that are potentially relevant: I have a fairly severe, but not total IgA deficiency, IBS-C, and the previously mentioned Factor V Leiden clotting disorder. I have a history of anemia, as well as dysautonomia. Medication-wise, I take Nora-BE (mentioned), venlafaxine for dysthymia, and am currently taking doxycycline for a staphylococcus UTI. I am not pregnant. For the love of all possible gods I'm definitely not pregnant, as I not only haven't had sex for like... two months now, but I've taken at least eleven pregnancy tests in that time via clinicians not communicating and wanting to "rule it out" when I come in for other complaints. I was tested for the dreaded C-virus (not because I had symptoms, but because my campus essentially requires it) and was negative. I am in the United States.
My main question is this: is persistent bleeding actually normal with the Skyla IUD? When I call the advice line, they tell me to ask a gynecologist, who, if they get back to me, say that "irregular bleeding is a normal side effect." Not one has addressed the fact I'm asking about persistent, non-stop bleeding, and I don't have time for an office visit because I'm currently dealing with university chaos and moving 1000 miles. That and my insurance is unstable because of the switching process (I don't know if I'm covered until January 1st as of right now).
Other questions include: are other IUDs better for people with menstrual symptoms/histories like mine? Should I even have an IUD? Is it worth it to stick the symptoms out and see if they improve within the 6 month period after insertion?
Thank you, and sorry for the long post.