Camila and Cabergoline

[blueyed-turtle.livejournal.com]

Hey all ---- I was hoping maybe someone could provide some kind of insight.

A little background: I'm 25, PCOS, history of endometriosis, pituitary tumor, not THAT sexually active (I have a boyfriend who lives several hours from me) and I hadn't had my period since late September 2007. In August of 2007, I had laproscopic surgery. I've been on several forms of birth control. I've been having pain a LOT around-below my abdomen. He tested out my blood levels a few months ago and saw that I had an very high levels of prolactin levels - almost dangerous, to the point where he hadn't ever seen it before. So he wanted me on Cabergoline to bring those levels down.

He has prescribed a few BCP since I've started seeing him a few months ago (mostly at first to get my period started as well as ease the pain of possible endometriosis), but I hated them and way they made me feel. I know BCP is supposed to kind of figure out my hormones a bit (especially since I've been so long without a period), but something in my body was telling me something isn't right. I had an anxiety attack a couple of times. And now I'm on the mildest form - Camila (in the event that it doesn't work, I may have to have another laproscopic surgery, which worries me a little because I don't want them to do the surgery and then they not find anything and I'm just crazy and all the pain is in my head).

My last cycle was a couple of weeks ago - as far as bleeding goes, it seemed normal to me. However, the pain has not only gone away, it has magnified. Especially in my lower back and it's been worse since I started Camila at the start of September. I've been feeling pain even more in my upper left thigh and various parts of my pelvic area. Some pain even within my butt muscles.

Lately I've gotten more depressed and moody, this constant unsettling feeling, headaches that feel like I'm constantly standing up too quickly, nauseous, suppressed appetite, headaches, this feeling I'm in a daze and panic attacks. My body is telling me that something is obviously wrong and I think it has to do with either one of the meds or both. I'm going to call the doc on Monday on what I should do, but I really, really don't want to continue with either meds!

Oh and I also apparently developed some skin abnormality, like a wart or something in the front of my neck...? It really came out of nowhere and I've had it for about two weeks and been waiting for it to go away. Not sure if it's related, but worth mentioning, I think.

Has anyone ever experienced side effects with Cabergoline and/or Camila?

(Sorry if this seems like deja vu - I know posted a similar question in regards to Errin and Cabergoline a couple of months ago, but it seems the side effects are worse than before...?)

I hope I've made sense...thanks in advance.

Comments

[archangelbeth]

I'd ditch the HBC first and see if it helps; you can just stop taking it (though of course if you've been sexually active such that semen got into the vagina, you'd want to wait a few days (a week is a very conservative estimate) so the sperm would be dead), and it's unlikely to do anything but provoke another withdrawal bleed as the hormones drop and tell the uterus, "Okay, see what you can kick out this time!"

You may well need another brand of HBC, with a different form of synthetic progesterone -- it's not necessarily the level so much as the type, for some people. (And for some people, it's the level. HBC is really a "roll the dice" kind of thing for everyone. Adding a different medication as well? Introduces the potential for side-effects due to the drug interactions. Wheeee. O:p )

Or it might be the estrogen, actually; if you have/had a pituitary tumor, is it sending your thyroid mixed signals? (Or not enough signals?) Estrogen will interfere with thyroid hormones such that your body can't use them, and brainfog, depression, and anxiety can be hypothyroid symptoms... Anxiety/panic can also be a hyperthyroid symptom.

I'm assuming the doctor asked if you were doing lots of breast-stimulation? (Since that can bring on high prolactin levels.)

Remember: the pain is very unlikely to be all in your head. (Well, except insofar as the nerves send signals to the brain, which the brain then processes and identifies as "oh, this is pain." But that means that pain is "all in" everyone's heads.) And it does sound rather like endometriosis.

How do you tolerate progesterone-only pills? If you are okay with those, you might consider a Mirena to (hopefully) suppress your cycles (and thus the endometriosis) entirely. I believe paraxeni, a VP regular, has a Mirena for that purpose.

I hope some of that is useful to you! Good luck!

[blueyed-turtle.livejournal.com]

Wow, lots of great info - thank you! I haven't been sexually active with the boyfriend since the beginning of May, it's not really a problem at this point (well, depends on how you look at it, I suppose...hah) I don't feel sometimes I'm sexually active enough to consider myself 'sexually active' anyways. Plus the pain during intercourse has been really bad also, which is why - even though I really, really want to with the loving and understanding boyfriend - at the same time, I'm like, "I don't wanna..." lol

The last birth control I was on - Errin - I did stop taking it after I had a panic attack because I thought it was associated with it and I decided to stop the Camila recently as well.

The Doc did ask if I had any discharges or leaky nipples and I told him I didn't. I'm glad you indicated that it sounds like endometriosis because I had a gyno from Birmingham (before I moved here) that told me that it didn't, even when I told him that a laproscopic surgery revealed scar tissue on the uterus - "that doesn't mean it's endometriosis" AND when his nurse informed me I had HPV, she told me that I could have ONLY gotten it through random sex partners and that it NEVER EVER goes away and I'll always have it. I was not a fan of that doctor's office...they made me feel crazy lol)

I'll ask about the Mirena, but I thought that was typically for women who had already been pregnant and I never have? Please correct me if I'm misinformed!

I really, really appreciate your help! :)

[archangelbeth]

Consider finding a Pelvic Pain Specialist, in case you have vaginismus or vulvodynia as well as endometriosis. Endo can certainly cause pain with penetrative sex, but there may be other issues as well.

Errin is Camila. http://www.drugs.com/cons/errin-oral-parenteral-vaginal.html lists it as different names for the same formulation. It's also a POP, not a combined pill, so... what the frell is your doctor thinking here, putting you back on a formula that you had problems with before??

Okay, so Errin/Camila are both generics of Jolivette, which uses the synthetic progesterone called Norethindrone. (http://www.drugs.com/mtm/jolivette.html)

Mirena, on the other hand, uses the synthetic progesterone called Levonorgestrel. (http://www.rxlist.com/mirena-drug.htm) So to find out if the Mirena would bug you, you'd want a POP or combined HBC that uses levonogestrel as its progesterone.

Mirena, like all IUDs in the US, was originally targeted at "parous" women (people who've had kids) for two reasons. Firstly, due to the Dalkon Shield *spit* disaster, Inter-Uterine Devices have a very bad rep in the US, and the perceived risk (not actual risk) of loss of fertility would be mitigated by "you already had kids." Secondly, and slightly more reasonably, a uterus that's had an occupant is more likely to be big enough to contain the IUD comfortably; but that's just "odds" and not absolutes. Thirdly, and less reasonably, a cervix that's had a baby go through it usually has a slightly wider opening into the uterus, making insertion of the IUD easier -- which makes it easier on the doctor. (And due to the Dalkon Shield *spit* fiasco, US doctors don't have a lot of experience inserting IUDs at all...)

So a doctor who tells you that you can't have an IUD because you haven't had kids is fibbing through their teeth or Extremely Misinformed. The only way they can tell if your uterus is too small is to measure it via "sounding" (inserting a rod through the cervix to see how deep the uterus is). An ultrasound might also provide clues, but I don't know how accurate it would be.

And the HPV thing is, um, not well represented. First-off, there is debate as to whether the virus remains contagious after the immune system has suppressed it sufficiently that there are no symptoms, or if the immune system eats that bugger and it is no longer present in your body. (An example of "remains contagious, sometimes even without symptoms" is HSV (herpes/cold sores); the virus hides in the spine where the immune system can't affect it, and occasionally sends contagious viral particles down the nerves to the mucous membrane or skin surface. An example of "no longer contagious; immune system killed it" is... the common cold!) Basically, unless someone's come up with a medical breakthrough I don't know of, the medical community doesn't know if HPV goes dormant or is eradicated; it is believed that, either way, it becomes either non-contagious or much less contagious, after some years.

Meanwhile, HPV is the genital equivalent of the common cold and flu, with emphasis on common. It is extremely contagious (though condoms have about a 70% chance of stopping transmission) and spread by skin-to-skin contact. I believe there's like a 30% chance of being exposed by one's first partner who was not priorly unicorn bait. Yes, the more partners one has, the more statistically likely it is that one will be exposed. Just like the more people you're around, the more statistically likely it is that you'll catch a cold or flu.

So that nurse was... ill-informed and judgmental, at best, shall we say.

Crossing fingers that I'm still useful here! O:>

[blueyed-turtle.livejournal.com]

What the french toast? I have had at least three on that list within the last couple of years - no wonder I keep getting the same side effects! As for the IUD - that was based on what I heard in the Mirena commercials - we didn't actually touch that subject though I think it was kind of understood that it may not be what I need at the moment. But I'll bring it up next time I see him!

As for the pain during sex, I've wondered about the other conditions you described as well because it does seem like I have painful intercourse almost no matter what I do. I've tried different positions - lubrication is not the issue. It's like there's a certain spot when I'm penetrated that just hurts like hell and I have to figure out a way to shift. And there's the tightness, which seems to sometimes be a fleeting thing - I'll have it and then I won't. Sometimes at the beginning of it, sometimes in the middle and/or sometimes towards the end.

When I first learned about the HPV, I thought I was pretty informed on the basis of it and then when I was diagnosed with it, the nurse basically turned it into a horror story. I freaked out. After a few minutes of calming down, I realized that she did come off as a little judgmental...she basically indicated that maybe because of my age and I was just out of college, that I had more than my share of partners. I wanted to punch her in the face over the phone. But after a year (and the coplo...), I was given a clean bill of health (well, free of HPV) by my current gyno. And he gave me more informative details when I asked about it at the last appointment (because I asked him how come I didn't have it anymore lol) - basically everything you just said.

You have been very helpful and I appreciate it so much!

See Beth Ranting About HPV!

[archangelbeth]

You've almost certainly heard this before. But for any viewers who are just now tuning in... O:>

[RANT] Oh, sheesh, HPV isn't a horror story. It really is a lot like a cold or flu. The wart-causing strains are like colds; they can be unsightly (like my nose) and painful (like my nose). Heck, a cold can give me sinusitis, which sent me to the ER on Xmas day many years ago, and required antibiotics on a not-so-emergency basis last year. So wart-causing HPV is less a health hazard than a cold.

The other strains, that can potentially cause cervical cancer, are like the flu. The flu, and the potentially-cancer-causing strains, are both usually dealt with by the body; indeed, HPV can be dealt with by the body without any symptoms at all, just as your body can deal with at least a few strains of flu. The flu, with bad luck, can turn into pneumonia; HPV, with bad luck, can start causing the cervical cells to change (though even then, the body often clears the virus without any intervention except monitoring things a bit more). Without medical care, pneumonia can be fatal; without paps and sometimes removal of the bad cells, HPV can progress to cancer, though it usually takes years for this to happen.

Yes, having HPV does mean that you want to make sure you get occasional pap smears to make sure that it hasn't talked your cervical cells into punk tattoos and loud music, let alone rioting, but with those paps? The chances of it ever getting to the alarming stage is low. [/RANT]

Now, yes, well, no wonder you keep getting the same side effects, if you're taking the same progesterone! Yes, some people have their issues with the additives, and a different generic might help, but honestly, I'd switch progesterones first.

Tightness does sound like potential vaginismus, though I'm not a Pelvic Pain Specialist so I can't tell for sure; vaginismus is a reflex, though, like the reflex that makes people blink when something comes at their eyes, so it can show up unexpectedly. The "Certain spot" could be a vulvodynia, but I'd be inclined to suspect it's a patch of bad endo first; again, a PPS would be more able to figure that out. Can you get a referral to one in the area, mayhap?

Anyway, glad to be helpful, and fingers crossed that you can wring some answers out of the doctor... And try a different HBC!

[sweetchild92.livejournal.com]

Yeah, the Mirena commercials really emphasize parity. When the company first took it to be approved and marketed, they decided to have it just reccomended for parous women to skip the whole "omgz infertility!" worries

From: http://www.wired.com/magazine/2011/07/ff_iud/2/

Few US doctors knew how to insert IUDs. And since the Shield debacle, the FDA had begun regulating IUDs and medical devices far more forcefully...Berlex also made a clever decision about marketing: It sought FDA approval only for women who already had children, skirting concerns about fertility.

Clever or not, it's a damn shame this misinformation persists.

[mercyoverthrown.livejournal.com]

Sorry, for the tangent unrelated to the OP, but I am so interested in this part of your comment: "Estrogen will interfere with thyroid hormones such that your body can't use them..."

I have mild hypothyroidism (numbers wise, but I was having severe symptoms) and really had a rough time finding a doctor willing to treat it until a friend connected me with her naturopath who specialized in reproductive health. The naturopath put me on a low dose of synthetic TSH and T4 (after every blood test in the book that several other doctors wouldn't even run). She said that she suspected that being on estrogen-containing HBC was the culprit as that's when the issue started, and I had no antibodies or any other indicators of a diseased thyroid, although I did have wonky test results otherwise. She recommended using Fertility Awareness Method as birth conrtol.

At the time I was overjoyed that a doctor had done more tests and prescribed me medication yet being very unready for a baby at the time I was not confident in my ability to pull that method off successfully, plus I knew she was anti-HBC in general so I dismissed that recommendation.

Anyway, point is that I find it really interesting to see that it is indeed common knowledge that estrogen in HBC can affect thyroid function. Sigh. Non-estrogen HBC hates me too. I may have to revisit the FAM idea eventually.

For the OP, sorry again to have gone on a tangent, but I did originally come here to suggest thyroid issues (which has obviously been covered) and also to add that you're right to listen to your body, an if you are really feeling that your doctor is not taking you seriously, be assertive that your side effects are intolerable and you have to find another treatment path, or go elsewhere.

[archangelbeth]

Estrogen interferes with the body's ability to utilize T4, yeah. If you have a slightly-slacker thyroid, for whatever reason, it can't compensate. So adding levothyroxine (synthetic T4) may be necessary when on HBC.

Your naturopath shouldn't be putting you on TSH! That's "thyroid stimulating hormone," made by the pituitary. T4 is the hormone the thyroid makes the most of.

I have to run; have you seen thyroid? Great community!

[mercyoverthrown.livejournal.com]

Levothyroxine and T3 are what I take, not TSH, that was my typo! I'll check out the community, thanks.

[archangelbeth]

Oh, whew! I was hoping that was a typo. O:>