#jencycla

[distractedpebble]

I am in tears today.

About a month and a half ago, my doctor changed my birth control without telling me. It's "basically the same" because they're both Progestin only pills because I can't take anything with Estrogen.

Unfortunately, I woke up in extreme pain this morning and I almost had a mental breakdown when I realized that it was my period, despite the fact that I've been taking the pill every single day at the same exact time. I don't know if it's that this pill doesn't work as well as the last one or what, but when I was on Slynd I never even had spotting. Now that it was changed to Jencycla, I've been cramping a lot, but it wasn't nearly as bad as period cramps so I didn't mind all that much. Then my back started hurting like it did during my period, but I made note of it and moved on.

But today. Today I woke up in so much pain, that very familiar pain, the whole reason I'm on birth control to begin with, and I wanted to lose it. I'm sobbing as I write this post because I'm so sick of it. I'm so tired. I don't want this anymore, I don't want to "handle" this anymore. I'm in so much pain. The pills were supposed to stop this, what's the point of taking them if they don't even work???

[cakesexuality]

Okay I'm about to take my pills and get ready for bed. I'm going into town tomorrow to have my third Lupron shot and I've got my backpack packed with my injection kit, a lunch bag full of snacks, the notepad and pen I use for appointments, my folding cane, and Miss Barbara Manatee as my emotional support plushie. Wish me luck!! Hopefully the manufacturer is going to cover my Norlutate or hopefully there's another add-back drug that is covered by my insurance

[mercsandmonsters-archived]

Guess whose cramps are coming back?

Mine! I know the birth control pill my current OB put me back on is not gonna work. I was on SLYND for three months from my old OB, and I have done well with it. Now that I finished the final pack, my current OB put me back on Jencycla. Jencycla does not work for me. I didn’t know that she put me back on Jencycla until my mother brought home my prescriptions.

[cakesexuality]

I find that when I set just a regular alarm on my phone to remind me to do something, I often dismiss it and don't do the thing bc I don't feel like it, but I use an app called MediSafe that harasses you over and over until you either take your meds or skip them, and you can also track how much is left of a med or how long it's been since you used an as-needed med

Sometimes, my problem isn't about remembering but about actually wanting to take them, where I know I need to but I'm not fully convinced to take them, so I find it helpful to call someone up during those times either to have the accountability of someone knowing I've taken them or so I can talk through why I need them in order to convince myself to take them

Or have a little treat (food or non-food) to motivate yourself!! I remember a time in high school where I was depressed and struggling to use my steroid inhaler, but I had a case of pop, so I'd tell myself I wouldn't have any pop until I'd had my 4pm Alvesco, and that helped me quite a bit with staying on top of my steroid

And going off of OP's first point about a pill box, try out different pill boxes to find one you like the most!! I've tried different ones over the years and am currently on one that's actually 7 pill boxes with 4 slots each and they all pop into a tray together, so I can grab a full day's worth of pills if I'm leaving the house and have them all with me when I need them. Pill boxes are especially helpful if your pills aren't the same every day -- my Jencycla is 2 days on, 2 days off and my Seroquel dosage changes depending on the day of the week.

If you have multiple meds that aren't a pill, consider putting them together in a container of some kind so they're tidy -- I keep my Alvesco and Omnaris together in a small tray beside my pill box

remembering to take your medication every day can be hard sometimes, so here are some ways you can make it easier to remember:

use a pill organizer

set alarms on your phone

take your meds at the same time(s) every day

keep your meds close by or somewhere you go to every day (nightstand, bathroom, kitchen counter)

have someone remind you to take your meds

develop a morning/nightly routine which involves taking your meds

take your meds with a meal

remember to be kind to yourself, it’s not the end of the world if you miss a day or two. but taking your meds every day is vital for recovery and stability - you wouldn’t want to forget it!

[wrenvibes]

Is anyone else here taking Norethindrone or a brand name of it? (some are aygestin, camila, lyza, jencycla) Because this goddamned medication has totally ruined my emotional state and motivation to do anything. I didn’t know how bad other people were experiencing these side effects until I looked the medication up, and I’m glad I’m not alone

[mercsandmonstersarchived]

So, I switched medications.

I just switched from the birth control, Jencycla to the Depo shot. Jencycla made the cramps hurt less, but I still bleed very heavily. I’ve always had a heavy flow, but Jencycla kept it the same. Even the one before I was taking Jencycla didn’t make my flow lighter. It stopped me from throwing up from my cramps, but that’s about it. Now, I’ve got to call Planned Parenthood and cancel the Jencycla because I went to a branch of the doctor’s office I go to. My mom’s trying to convince me not to get sterilized, since I’m now on the Depo shot. I just want to make sure that I am not going have children. 

I don’t want to have anymore nightmares about pregnancy. It’s been going on since high school. I’m also being pressured by my aunts on my dad’s side of the family to have children, despite me telling them that I don’t want any. I don’t know if they’ll accept pets as my children either. So, I’m just going to get sterilized just to be on the safe side.

[cakesexuality]

Occasional reminder that I have a tag for talking about my reproductive health called #the estrogen is slapping right now and I take questions about this topic

Suppressing my periods is entirely about pain and isn't about dysphoria, though I am non-binary

We thought it was endometriosis, but I ended up having a laparoscopy that revealed no endo, so we're back to not knowing the cause of my problems

I began the tag when I started on Lupron Depot in September 2022 with Estrace and Movisse/Jencycla as my add-back hormones, but I was previously on Depo-Provera, which we stopped bc it wasn't working and I seemed to be in a withdrawal of some kind only 6-8 weeks after each shot, and I am now on continuous Alysena 21, due to side effects of Lupron that I subjectively didn't like (but someone else may be seeking from such a medication)

I haven't tried anything else to suppress my periods, so I've never had an IUD bc I'm too afraid of it causing damage, I've never tried the patch bc I have garbage skin, the ring isn't covered by my insurance, I went straight to Depo first bc I didn't want to deal with possibly missing my window to take a pill and ending up with bleeding (although I ended up with a lot of bleeding despite the Depo), and Nexplanon has just never been a conversation

Hysterectomy (without oophorectomy) is on the table, so that may happen in my future, just not right now due to both the recovery time and the fact that Alysena is working well so far, but you know I would be writing about it under my reproductive health tag

I've got a really lovely gynecologist (she's the one who proposed hysterectomy to me, a then-26yo with no children) who's following me through all this and I'm seeing her next on February 8th, so I'll ask her then what she now thinks could be putting my hormones out of whack and causing my periods to be so weird and so painful

[cakesexuality]

Yet another health update

My anorexia seems to be dormant again now, so my GP has given the okay for me to try out Latuda

My GP's not comfortable with anything other than giving repeats for prescriptions other people have written, so my options are staying on Seroquel, changing to Latuda, or going unmedicated

I'm having to put my Wellbutrin on hold for a while bc I can't take it without an antipsychotic, so I've been feeling tired from not taking it as much, but cutting back on Seroquel now is giving me some energy back

We've been trying to get me a new psychiatrist, but 4 different hospitals so far have all said no 🙃 so CMHA is gonna see what strings they can pull for me to get a consult for recommendations which might make my GP feel easier about giving me psych meds

My gynecologist has a new receptionist, so now there's 2 of them, and I like the new one better than the old one, who ignored most of my calls when I tried to call 24 times in 1 month while I was in a lot of pain and distress

The new receptionist had called me to make an appointment for the end of August to have a surgical consult and I mentioned to her that I'm changing my psych meds, so I wanted to just say ahead of time that even though I might have trouble communicating when it comes time to sign my consent forms, I've been wanting this surgery for months already, in case anyone has any doubts about my ability to consent when I'm doing my consult

(Not that I think my gynecologist would do anything with the intention of being an asshole, but in case she wanted to delay anything out of an abundance of caution)

That receptionist then called me a few days later to say she found out I can have my consult at the same time as my July injection, and she asked for clarification about what I said about my psych meds, and she and I decided that I can keep my August appointment and do my consult in July or in August, depending on how able I feel to fill out those papers when I go for my injection next week

(I like this new receptionist, she was really nice about the whole thing with my antipsychotics)

I think I'm gonna ask the gynecologist if I can try being without Lupron for a lil while after surgery?? Bc I don't like how it's altered my body shape or my facial/body hair, but maybe I just need to stick with the Estrace and Jencycla for a bit longer... I have my kit for this time around and it's another 3-month injection, so it won't be for a while that it would even be possible for me to be without any gynecological medications

[cakesexuality]

Hey, since I don't believe I've ever made a post about this that actually uses tags for the sake of discoverability --

My name is Billie and I'm on Lupron!! I also used to be on Depo!!

Since 2017, I've been experiencing chronic pain of my uterus and ovaries, which so far does not have a confirmed cause, but my gynecologist and I think it's likely endometriosis

I started Depo-Provera (injectable progesterone) in 2019 then discontinued it in 2022 when I started Lupron Depot (hormone suppression), and my add-back therapy for Lupron is a combination of Jencycla (a form of oral progesterone) and Estrace (a form of oral estrogen)

My gynecologist and I are currently in the process of finding out if I can have a laparoscopy to confirm whether I have endo and to remove it if it's there, we're both on board to do it but I've gotta talk to the anesthesiologist first to find out if it would be safe in combination with issues I have with my joints and my heart

Ever since I went on Lupron, I've been posting here on Tumblr about my gynecological issues as well as some of my other health issues when they seem to be in connection with my gynecological problems, using the organizational tag of #the estrogen is slapping right now which I have popped into the tags of this post for easy finding -- I suggest checking out this tag directly on my blog, since I also use it for reblogs and not just original posts

Suppressing my periods isn't for dysphoria reasons for me, I only do it to deal with my organs being diseased, but I'm using trans tags here bc some of this info could potentially be useful for those of you who are medically transitioning or wish to do so, in addition to possibly being helpful for people like me who are using these medications to treat conditions like endo

I'm open to questions about this stuff, so if there's something you're wondering that you can't find in my special tag or that I haven't written about, ask me!! I don't always have answers and also my body is really weird so I can't be a very good standard for expectations, but I'd like to help you as much as I can

[cakesexuality]

8 months Lupron, 1 month add-back

I've discovered that I'm now slowly growing a very small amount of dark facial hair that isn't super visible but I'm p sure it wasn't there before, and I mean if you're hoping to do testosterone later on or if you're using testosterone as your add-back then this is probably a desirable effect for you, but I'm using estrogen and progesterone as my add-back for a reason lol

(I didn't know this was something that could happen!! Bc it turns out that it's not about your testosterone on its own but your testosterone in proportion to your estrogen and my testosterone has hardly budged while my estrogen has gone way down, and I'm still working on how I feel about this but it might be helpful info for someone else)

I don't think my body shape has changed at all, since I feel like my fat has redistributed since starting Lupron, and I know for a fact that my bra size hasn't changed either, but it can take a few months to begin to see those sorts of changes with estrogen

Progesterone helps with my digestive issues but the two days on, two days off with Jencycla is causing some :^) flip-flopping of symptoms and I need to talk to my gynecologist about that, like if I could do every-other day to help even it out, although this is preferable to when I was on Depo and it would wear off after a couple months and things would get worse for weeks on end instead of only for like... half a day

Ever since my 2nd shot (my 1st 3-month shot that I got in October), my site (left arm) keeps getting a lil bit sore on and off when it shouldn't be even though that's never happened to me with stuff like Depo-Provera and flu shots and even my COVID shots stopped hurting after the first few days, and I had pain go down my arm when she did my most recent injection (April) which also has never happened to me before when getting any sort of injection, but I have muscle and nerve issues in my arms due to scoliosis so I think I'm gonna ask if we can try a different site like my thigh next time (July) so we can see if it's actually from the Lupron or if it's only from my shoulders being fucked up (or even if my body is just angry at me for always using the same site!!)

(I think I had mentioned that my arm kept getting sore in a previous update?? But I'd been spending a lot of time at a friend's house around that time where the way I sit on his couch puts weird pressure on my site so I thought it was from me being stupid and sitting wrong, but I haven't been to his house in a few months now and it still happens so it's probably not actually that)

I said last time that we weren't sure if I would transition to doing my shots at home bc I don't have the pain that I did when my Depo would wear off, but bc I've been having to go to so many appointments for other things, doing my shots at home might help take stuff off my plate

I still haven't had a consult with the anesthesiologist to talk about laparoscopy bc I haven't heard from anyone, I don't know who the doctor is so I can't reach out directly, and I called my gynecologist's office last week to ask if they knew what was up with the referral so I could maybe get my consult booked, since my gynecologist was hoping to have the surgery done before my next injection, but the receptionist doesn't know who the anesthesiologist is either, so she was gonna talk to the gynecologist and get back to me

[cakesexuality]

10 months on Lupron, 3 months of add-back

I went to see my gynecologist and my GP yesterday

I'd called the gynecologist's office a week or two ago to say that I'm changing my psych meds and wanted to give a heads-up that I might seem confused but I've wanted since February to have a laparoscopy, just in case the gynecologist had any hesitations about having me sign the forms when I was like that

When the gynecologist came into the room, she asked how I was feeling, and I thought she meant my hormones/pain but she meant my brain lol, but I'm doing a lot better with tapering off of Seroquel than I thought I would be

We went over my questions for her and her explanation of the surgery before my injection, and then I filled out the paperwork after my injection

She's on board for me to try out no Lupron after my surgery, since the laparoscopy will probably be in September and this was another 3-month kit, which will take me to October

My arm keeps hurting with Lupron, which isn't something that has ever happened to me with other injections, like Depo or flu shots, so I asked if we could try a new site this time (any site that isn't an arm, bc I have scoliosis so the pain could've just been my muscles freaking out unrelated to Lupron) and we tried my butt, which I like a lot better than my arm!! The injection itself hurt a lot less, the pain faded a lot more quickly, and it only feels tender when I intentionally poke around to find where she injected it

My Jencycla is gonna change from 2 days on, 2 days off to every-other day bc of how it affects my intestines, but it's all otherwise staying the same for my add-back

She's sending me for bone density testing to make sure everything's going smoothly inside there

The receptionist had booked me a 2nd appointment for August to do a surgery consult in case we decided I wouldn't be able to sign the forms or follow along with the consult in July, but I got to cancel that at the front desk as I was heading out yesterday

I don't have my surgery booked yet, but they'll call me when they have a date for it

If she does in fact find endometriosis and she finds a lot of it, then there would possibly be a second surgery later on, just in case she wants to take out an ovary or part of my colon or something and then I don't have to wake up from the first surgery with a surprise organ missing

The appointment with my GP didn't go so well 🙃 but I'm still processing it and I have a salty post about it in my Tumblr drafts lmao

[mercsandmonsters-archived]

The women’s health place I go gave me birth control pills that don’t work for me.

I told my current OB the name of the birth control my now-retired OB gave me, which is Slynd. She sent in a prescription for a pill that doesn’t work for me, which is Jencycla. Jencycla doesn’t last too long in my system. I like to Slynd. It doesn’t stop and bring back my cycle. Jencycla will stop suddenly and I’ll have to intense cramping and have to wait until May 3rd to get anything done by my new OB.

[cakesexuality]

Roughly 4 months on Lupron

I saw my gynecologist today and she started by asking about when I called in to ask if Lupron could have upset my immune system back in October -- We both agreed that that's probably not the case, since nothing happened (aside from the surge then drop of hormones) when I had the 4-week kit and I had a 2nd big immune flare in December, but hey my body is held together with duct tape and bubblegum so you never fuckin know how I'll react to a drug lol, I can't even take Allegra without going blind

I already said that we were denied by ODB and then denied by EAP for Norlutate coverage, and she said today that the manufacturer won't give us full coverage, but they can at least give me a discount card that can bring my prescription cost down to about a third of the normal price

I forgot to ask her about my dietician's suggestion of trying a compounding pharmacy!!

I also forgot to tell her that my raw DNA data appears to say that I have a higher risk of endometriosis!!

My gynecologist asked if I had plans to medically transition (I don't and never really have) bc testosterone counts as an add-back and if that's something I wanted, then we could scrap the process of finding a progesterone that's covered and just go for transmasc HRT since that's under ODB

She's gonna go back to looking for a progesterone I can take, bc Norlutate is the standard but it's not the only option

I think I read that medroxyprogesterone can be an add-back?? I should've asked about it bc I'm not sure about what I read, and she wanted me off Depo-Provera (intramuscular medroxyprogesterone) bc of bone density concerns, but the reason we need add-back after 6 months of Lupron is for bone density concerns... perhaps it's different for oral Provera but I have no idea

She said that she's read about people losing their periods from being on only 5mg Norlutate, no other drugs added, so we could possibly accomplish the same thing while ditching the Lupron... but it's still the Norlutate that we can't get coverage for (I'm not really sure how successful that might be for me anyway, since I still bled too much on Depo-Provera which is also supposed to stop your periods over time)

There are some norethindrone products covered by ODB but they're contraceptives, so it's stuff like Jencycla, where the dosage is so incredibly low that I'd be going through one pack of birth control every two days to get the correct amount (the mental image of counting out 98 birth control pills every week for my pill boxes amuses me), or it's stuff like Brevicon, where it's combined with estrogen, which feels counterproductive to being on something that suppresses my estrogen production

We had a chat about my skin and the conclusion was to keep going along with doing hypoallergenic skincare and taking the doxycycline my GP prescribed

I didn't ask about my TSH bc my eyebrows seem to be growing back in again, but she wrote me a requisition to check my estradiol and testosterone since I'm curious to see how my current levels compare to when I was on Depo-Provera

We didn't have any discussions about surgery today, so I'm glad that she isn't thinking about that just yet, and this buys me plenty of time to talk about it in therapy lol

And I'm booked to get a fourth Lupron shot in April, so 🤷‍♀️