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 Post subject: Infertility anyone?
PostPosted: Wed Sep 30, 2015 5:20 pm 
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Flat Chesty McNoBoobs
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I've waffled about posting a thread about this here, since I've found that it's conversational kryptonite to talk about finding out that I can't have kids. However, I'm trying hard to not feel ashamed of my medical condition, and I'm guessing I'm not the only person who has dealt with this particular shitsandwich here on PPK, so... this is the place to talk about it if you want.

I've posted in a couple of other threads that I was diagnosed with premature ovarian failure early this year. I'd been having serious symptoms (hot flashes, night sweats, etc.) for years, but doctors had always chalked it up to my metabolism (which, looking back, what the hell???). When I finally had a doctor decide that maybe hot flashes weren't normal and send me for blood tests, my FSH was literally off the charts, and so I was hustled off to a reproductive endocrinologist, where my diagnosis was confirmed. Subsequent testing has basically revealed my reproductive organs to be 95 years old, though fortunately, my bones aren't in as bad shape as they could be due to the lack of estrogen that had been going on no one knows how long.

I'm on hormone replacement therapy (UGH), and while it helped my symptoms for a while, they've started to come back, so I'm probably going to have to up my dosage (BOOOO).

On the mental health side of things, though I've never been a person who KNEW they wanted to be a mother, my diagnosis has been hard. D and I were planning to start trying to have a kid after we closed on our house, and now, instead, we're grappling with whether we want to try to conceive using donor egg IVF. It's a weird place to be in. I don't identify with people who are child free by choice, but I also totally don't identify with some of the other ladies with infertility I've met who are just desperate for a baby. I'm old enough at 34 to both have an awesome life currently and know that my life can/will continue to be awesome without having a kid, but having the choice taken away from me has been very difficult to come to terms with. I struggle with jealousy, and bitterness but I find that it's getting better as I've had more time to live with it. Now, I mostly just struggle with feeling isolated.

So, there you go! Anyone else in a similar boat? Please feel free to chime in if you've been diagnosed with some type of infertility and had kids by way of adoption or science as well, but please be sensitive. I'm sure you know the drill if you've made it that far. :)

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 Post subject: Re: Infertility anyone?
PostPosted: Wed Sep 30, 2015 5:49 pm 
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jordanpattern wrote:
I'm on hormone replacement therapy (UGH), and while it helped my symptoms for a while, they've started to come back, so I'm probably going to have to up my dosage (BOOOO).


I’m in a different boat but:

When I was put on anti-cancer drugs to stop estrogen production I was feeling super shitty with the hot flashes and other symptoms. Research pointed me to Effexor which my oncologist prescribed (my gyn would have too). I was able to maintain symptom-free for a few years on a subclinical dose (and then I got whammed with depression and the dose got upped.)

Anyway — maybe weigh the ramifications of Effexor with increased HRT?

Also, big hugs. What a crepe situation.

http://www.breastcancer.org/research-ne ... ot-flashes
http://www.webmd.com/menopause/antidepr ... ot-flashes

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 Post subject: Re: Infertility anyone?
PostPosted: Thu Oct 01, 2015 12:04 pm 
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I'm in a similar situation as Sz, also a breast cancer patient. Since my cancer grows with estrogen and progesterone I was also put on anti-hormonal medication, although chemo already caused my ovaries to stop working. After chemo I was put on GNRH-analogues for two years to keep the ovaries from starting their work again, which was only done because I was a pretty young (and therefore high-risk) patient; it is not standard therapy as far as I know.

Since this year I am done with the GNRH but the regular blood work shows that my ovaries do not seem to get back to working. I have not yet had the chance to talk to an endocronologist, but my gyno told me that this can happen, unfortunately. Also, my cancer is genetic, so just the possibility of giving all that I experienced to my child has for me been strong enough of a reason to not consider children any more. So, while I never explicitly wanted to have children I find myself in a similar situation of not having the choice any more.

The thing is, I only never wanted to have children because I feel like our world is not a good, safe place to grow up in (this is the short version) and also because I never thought I'd find someone I would actually want to have children with. Then I met my partner, whom I love so much and I realized that in a perfect world I'd love to have children with him.

I'm also having a hard time coming to terms witht the fact that there is no 'perhaps' any more, no choice, no potential happy family life. I was an unhappy child myself and it would have been so wonderful to give another child a positive, loving environment to grow up in.

Sometimes I feel like I can deal, on other days it all becomes unbearable. In addition to the breast cancer a bunch of other awful stuff is happening in my life and it's not easy for me at all. Today is a rather bad day, other days are better. I also feel bitterness creeping up, when I see friends and their babies and toddlers and how much they enjoy it, and while I'm very happy for them it also stings constantly.

In terms of mental health, I'm learning to allow myself to hurt and be sad and angry and also try and arrange myself with my new life. I used to push the negative feelings away big time, but they come back with a vengeance anyway, so yeah, I'm thinking about all this a lot, too. But, life goes on, as they say and we all have to find ways to deal with it, right?


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 Post subject: Re: Infertility anyone?
PostPosted: Thu Oct 01, 2015 12:27 pm 
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I have nothing to add but love. <3 <3 <3

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 Post subject: Re: Infertility anyone?
PostPosted: Thu Oct 01, 2015 1:44 pm 
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Thanks for the suggestion, ~Sz. I'm actually seeing a new RE next week, so I will ask her about Effexor. I'm sorry you've had to deal with hot flashes as well - they suck so much!

Lily, I'm sorry you're having such a crepe time right now, and I'm sorry that you're having to deal with crappy hormonal/infertility crepe on top of crappy breast cancer crepe. That sounds so hard, and I hope it gets easier for you soon. I relate to a lot of what you wrote. I also want to be happy for the people in my life who are having babies, and I am, but it does certainly sting. I think, though, that even worse than that is that it's totally socially acceptable and even expected for these people to talk and post about their pregnancies and babies and kids all the time, but it's socially unacceptable for me to talk about or post about my experience. As someone who very much works things out by talking about them, feeling like the walking talking awkward bummer factory is The Worst.

Anyway, thanks for sharing, guys. <3

And thanks, MBM. <3

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 Post subject: Re: Infertility anyone?
PostPosted: Thu Oct 01, 2015 3:01 pm 
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mrsbadmouth wrote:
I have nothing to add but love. <3 <3 <3
This. Whatever you choose to do, you will (as you point out) have an awesome life, but I imagine it must be a shock to to have options taken away out of your hands; I'm sure I'd be p*ssed off, too.

Not my own personal experience, but I do have a success story, if it's any help. My cousin's partner has the same condition, and she conceived via donor egg IVF and delivered a healthy baby boy this past summer. (And for the record, she's 5 or 6 years older than you; like many of us, it took her awhile to find Mr Right, and then things turned out to be more complicated than she'd expected.)

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 Post subject: Re: Infertility anyone?
PostPosted: Thu Oct 01, 2015 5:33 pm 
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Many hugs and <3's, JP. You mention the ugh's and boo's of being on HRT, but to me it sounds like being on HRT (when you find the right levels for you) is going to be really great for you. As someone who is forgetful enough with their own HRT administering, I know very well that it feels super shitty to be running on low/no hormones even just for a few days, so I can imagine how frustrating that would have been chronically. Is your HRT just replacing your estrogen, or is it a mix of hormones? I have heard that some people on HRT benefit from taking low levels of the opposite sex hormone, as all normally functioning gonads do produce a mixture. Might be worth inquiring!

Anyhow, I get bouts of anger over my body's infertility also - even though some would argue it's infertile by choice. But I do not feel that way - I did not choose to be born without male gonads, and there's really just no possible way I could handle being on female hormones to use the female ones. I would not survive. I get a lot of jealousy sometimes when I hear about more friends becoming fathers. And so easily too! Sometimes I feel like kind of a crasshole for feeling this desire to biologically father a child when I know how legit and amazing adoption is. But I don't know, I guess that whole animal evolution thing is still a part of me no matter what my logic may think.

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 Post subject: Re: Infertility anyone?
PostPosted: Thu Oct 01, 2015 5:49 pm 
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What a shitsandwich indeed, dude. I can totally get the dynamic of not being in a situation of being desperate to have a child, but then finding out that choice is taken away being extremely hard to cope with. Especially when you are at the place where you'd like to be doing that. I'm rooting for you and hoping you find a solution that works for you and D.

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 Post subject: Re: Infertility anyone?
PostPosted: Thu Oct 01, 2015 5:58 pm 
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Hey, I hadn't thought of infertility as it relates to trans issues, Mars. Thank you for sharing. :) I'm sorry you're dealing with this stuff also. I feel like it's extra hard to come at the issue from a place other than being a married woman who has always wanted kids and wants to get started having them ASAP, because it seems the overwhelming majority of people who are treated for infertility-related issues are these women (or couples, I guess). All the practitioners I've seen have viewed me as a bit of an anomaly, from the RE, who didn't seem to get that I wanted a solid, effective medical strategy for managing the condition in my daily life before thinking about donor egg IVF, to the radiologist who scanned my bones for signs of osteoperosis and asked a million inappropriate questions about why I needed the scans at my age, to the pharmacists who are weird to me EVERY TIME I pick up my prescriptions. :/ I can only imagine that being a trans person, you'd have similar issues, which is crappy.

For my HRT, I am currently on estrogen and progesterone. I am seeing a new RE next week, so I'm going to ask a LOT of questions, and I'll ask her about male hormones. I currently take a DHEA supplement, which as I understand it, can help with testosterone levels in women, but it also seems like its effectiveness isn't all that well demonstrated yet, so who the hell knows. I'm excited to see this new RE, and hopefully get some answers to the many questions I have about athletic performance and this condition (something that's still really bothering me - I haven't felt right on the bike for coming up on two years now, and I strongly suspect POF is at least part of the reason, so I'd like to fix it if possible and not have to apply to race in the senior citizen fields at age 34).

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 Post subject: Re: Infertility anyone?
PostPosted: Thu Oct 01, 2015 7:25 pm 
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jordanpattern wrote:
why I needed the scans at my age


Wow, that is a really good call, Jopa. It is imperative to get a solid baseline. Without the estrogen production bone health can definitely in jeopardy. I've had a 3% loss over the last 3 years (which could be normal wear and tear). I recently made the decision to start running to help avert any more loss and at the next re-check I'll see if that is working (hope hope hope).

As for feeling shitty on the bike, all I can say is once you get things leveled out you will feel amazing --and you will. Getting back on and up to speed will be just as the cliche goes, like riding a bike. I mean, it won't solve the issue of the thread, but it will be a super big positive back in your life.

Also: Mars, thank you truly for the perspective!

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 Post subject: Re: Infertility anyone?
PostPosted: Tue Nov 03, 2015 4:46 pm 
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I'm bumping this to make a confession: I'm going to go and see a fertility acupuncture lady. I don't really truck with that kind of woo stuff, but given that I don't have any evidence-based alternatives because so little evidence exists in this field, I'm going to give it a try and hope for placebo effect.

I saw my new RE a few weeks ago, and I was disappointed to find that there weren't really any good options for treating my returning hot flashes. I'd assumed the doctor would recommend an increase in HRT, but she didn't want to do that because of increased cancer risk, so she advised me to "tough it out" for a couple of months to see if it evened out at all, and then get back to her if it was still a problem. It sucks, because if the hot flashes weren't bothering me quite a bit, I wouldn't bring them up (I'm having 10+ per day, and usually a couple throughout the night). It's so frustrating that these kinds of disorders are such a low priority for the medical field that there is only a single treatment, and not a great one at that.

So, anyway, I guess I have to turn in my skeptic card. I'll let you all know how it goes.

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 Post subject: Re: Infertility anyone?
PostPosted: Tue Nov 03, 2015 5:47 pm 
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Also, I would like to do a performance art piece where it's just me sitting in a chair in front of an audience wearing a hoodie where I rip it off and put it back on as hot flashes come and go. Who wants to help me write the grant proposal?

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 Post subject: Re: Infertility anyone?
PostPosted: Tue Nov 03, 2015 9:54 pm 
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Acupuncture isn't a cure-all, but there have been enough studies to show that it isn't woo. Most acupuncturists have you fill out a lengthy health assessment. So although when I first went to one the treatments didn't help with what I went in for (which he said at the start was pretty iffy,) it did help tremendously with menstrual cramps and lessening my flow, and also controlled my Raynauds. So maybe it can help with your hot flashes?

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 Post subject: Re: Infertility anyone?
PostPosted: Wed Nov 04, 2015 10:34 am 
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I suppose so. I did find a study that showed some effectiveness for POF. I am pretty wary of it, though, because the basis (Qi meridians) is woo. It might be helpful/effective, but there's no evidence that the effects are caused by the purported treatment mechanism, so as far as I'm concerned, it's still pretty firmly in the woo category. In any event, I'm willing to give it a try. I don't see there being much of a risk, and it's cheaper than seeing infertility specialists/REs who don't seem to have many options for me.

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 Post subject: Re: Infertility anyone?
PostPosted: Wed Nov 04, 2015 12:00 pm 
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Jordan <3

I don't have the same situation entirely but PCOS messes with your hormones and I've been taking BC pills for 15 years due to PCOS to regulate my hormones. I was talking to the pharmacist today about an antibiotic I'm taking and she was surprised that I had to pay for BC pills. For 15 years, I've paid $30/month or so because my body can't do it by itself. And it is sad that even now with ACA, my insurance is exempt from providing BC pills for free so I still pay.

I hope you get some relief from the hot flashes.

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 Post subject: Re: Infertility anyone?
PostPosted: Wed Nov 04, 2015 3:03 pm 
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I'm really sorry for the hot flashes Jordan. I had extreme hot flashes induced by my own fertility treatments and they were often so intense I'd throw up (perhaps a nice side piece to your performance art?). I'm sorry it was suggested for you to tough it out. FWIW my mother had terrible hot flashes during the onset of menopause and she had little help from traditional HRT until she found a OB who did (I'm not entirely sure, this was across the country) customized HRT medications (perhaps even with a genetic profiling component).
I hope you find some relief with the acupuncture and it sounds like the person you are seeing specializes in fertility issues, good luck!


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 Post subject: Re: Infertility anyone?
PostPosted: Sat Nov 07, 2015 2:06 pm 
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i hope the acupuncture works for you. i didnt want to post in the woo thread because that thread seems to get nasty real quick but i dont think you need to feel you are making any "confessions"

i predominantly believe in science and fact based stuff but i also have seen acupuncturists and chiropractors and have gotten enormous relief from both and i dont think its a placebo effect and i dont care that people dont believe me.

you need to do whatever you feel is best for your body.

i dont believe in the Chinese medicine behind the acupuncture but i believe it can work for somethings. i dont think i need 18000 peer reviewed studies to make something not a placebo.
ive gotten enormous pain relief from acupuncture.

the two ladies i saw also were very interested in fertility and babies and birth and all that. i never received any treatments in that vein but they talked about it a lot (i was pregnant at one point while going to them so some times they were telling me stuff like if the baby was breech they could flip it or whatever, they also talked about other pregnant patients they had or people who had infertility issues who saw them etc. obviously all anecdotal stuff)

i tried acupuncture for anxiety and i dont think it really did much but it definitely helped me for pain relief. i think everyone's body reacts differently. when i go and they put the needles in and then you lay there in a dark room for 30 minutes "relaxing" im basically lying there thinking "yup here i am lying in the dark, is 30 minutes over yet?" and i know other people who say getting acupuncture treatments puts them in like some zen like state for the 30 minutes.

so i have no idea if acupuncture will work for you. i hope you find some relief even if it's a placebo effect.
like you said you are looking for ANY option to help you out now and the acupuncturists i have been to have been professional medical people who did a full health history assessment on me. actually a couple times, because there was a couple years in between me going to them and i went for a couple different things. to be honest i think they did a much more complete whole health history on me than any other medical doctor ive been to who treats just the one area you are complaining about and doesnt think of anything else

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 Post subject: Re: Infertility anyone?
PostPosted: Sat Nov 07, 2015 5:06 pm 
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For what it's worth, I used acupuncture for fertility and to stay pregnant with Leela and helped manage a lot of my symptoms, but it didn't stop my other miscarriages, even though I've used it a lot. It seems to be one of those things that is worth a try when you really don't have any other options - it costs money, but it doesn't actually risk hurting you.

I really feel like I'm stuck between two worlds. I really want another baby, or at least would like the option of another baby, but we can't seem to have one. I've had three really upsetting miscarriages since having Leela and we've given up trying because our MDs have basically said it would have to be IVF, at this point because my eggs don't seem capable of making viable fetuses. But at the same time, I also have a healthy little girl, and so I feel like I don't have any right to say anything about infertility, because at least I have one kiddo. I was talking to a friend of mine who has now been through 9 IUIs and 5 IVFs and they are gearing up for their 6th cycle and my heart breaks for them.

I feel like we're a success story - 3 years of trying with lots of interventions, IUIs, miscarriages, etc but at least we managed a full and healthy pregnancy - so I have no right to wish for more, but it sucks to wish you could have another one, and know you can't really afford it emotionally (all my miscarriages have been really draining) or financially (IVF isn't covered for us). And people always ask if we want another and I give a standard "Oh no, we have a great kid and a happy life and one is enough for us" because I don't want to get upset. But I've started to at least be honest that we can't have another, and so Leela has picked up on that and is always asking why she can't have a sibling. And it sucks, because when I see our friends with siblings, I know that is such a special relationship and one that I can't give my daughter, and I feel like I've failed her.

Anyway, infertility sucks, it kicks my asparagus every day, and I hate it so much. I hope it's okay for me to vent here as well, even though I do have one child. If it's not, please feel free to delete my post.

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 Post subject: Re: Infertility anyone?
PostPosted: Sat Nov 07, 2015 5:17 pm 
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Many good thoughts to everyone in the thread, especially you, JoPa. I can't imagine how hard it must be to be struggling with hot flashes, hormonal issues and infertility and trying to find solutions, and I hope you find the support you need to manage your condition.

Thank you so much for sharing your story, there is so much pressure on people not to talk about infertility, and yet so many of us suffer with it.

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 Post subject: Re: Infertility anyone?
PostPosted: Tue Nov 17, 2015 8:58 pm 
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So, today was my acupuncture appointment, and it was okay. The lady was obviously knowledgeable about my issue and had worked with plenty of ladies with the same problem before. She took the first 30 minutes of the appointment and talked to me about my medical and fertility history, and what I wanted out of treatment. She's the first practitioner I've seen about this issue who I haven't cried in front of. The treatment itself was pretty unremarkable. She said it was a sort of general treatment to promote balance and whatever. I feel kind of pleasantly tired now, a couple hours after. She also gave me some herbs, which she said might help with the hot flashes, and suggested speaking to my RE about getting progesterone cream, as it is apparently better absorbed than oral progesterone.

Also, this is a ridiculous metric on which to base my opinion, but as we talked, she told me her husband races cyclocross and mountain bikes, and that instantly made me trust her way more.

Overall, she said some things that were pretty woo (like that animal protein is important for fertility, though on the other side of that, she didn't push the issue when I said my veganism was non-negotiable and was very good about making sure everything she suggested was vegan, and gave me loose herb granules rather than in gelatin capsules), but said a lot of things that I found mentally helpful, even if they don't bring about any physical changes. She definitely listened to me and had less of an agenda than the other practitioners I've seen, which, honestly, is worth it by itself.

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 Post subject: Re: Infertility anyone?
PostPosted: Wed Nov 18, 2015 1:40 pm 
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jordanpattern wrote:
(like that animal protein is important for fertility, though on the other side of that, she didn't push the issue when I said my veganism was non-negotiable and was very good about making sure everything she suggested was vegan, and gave me loose herb granules rather than in gelatin capsules)


My acupuncturist was also big on animal protein for my situation, but I also said no way and she was fine with that and I did the loose herbs as well.

Quote:
She definitely listened to me and had less of an agenda than the other practitioners I've seen, which, honestly, is worth it by itself.


There is a lot to be said for that.

As for progesterone cream, that is still HRT so be wary if wariness is warranted. I loved progesterone, I got the best nights of sleep when I took it (capsules), but it was just too risky for me. I still have it in my cabinet and I eyed it longingly the other day. I just need to toss it.

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 Post subject: Re: Infertility anyone?
PostPosted: Wed Dec 02, 2015 11:10 am 
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I saw the acupuncturist again this week. I think my hot flashes might be a bit less frequent, but it's hard to say if it's the treatment or the fact that it's just getting colder outside. In any event, I hope the trend continues, whatever the cause.

I realized something when speaking with the acupuncturist: I've had less than a dozen "natural" periods in my entire adult life. I started BCP when I was 15, and stayed on them for a decade+. After that I switched to nuvaring, and then an IUD after. I had totally not realized that before. It means it's totally possible this issue started long ago, but was masked by the hormones I was taking. I don't know if that makes me feel better or worse.

Anyway, I've switched my HRT from continuous progesterone to 12-days-monthly progesterone to see if I get a period, which might not be terribly helpful, fertility wise, but at least would give some indication of a cycle, so that I would know what days I have that 1% chance of maybe, possibly ovulating (but probably not). So far, nothing, and I'm not super hopeful, but we'll see. I also went a bit insane at the health food store and bought vitex, raspberry leaf tea, and maca. May as well go all in on the woo (or not-so-woo, I guess, since there are pretty positive ratings on vitex and maca on the FDA's alternative medicine review site).

In other news, I am sick sick sick of periods being the be-all and end-all unifier of women. It's petty and bitter of me, but the constant reminders from Bust, bisque, Feministing, etc. that I'm defective still smarts. I really wish there was more media on infertility and more positive/realistic portrayals (or hell, portrayals, period) of women with fertility issues out there.

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 Post subject: Re: Infertility anyone?
PostPosted: Wed Dec 02, 2015 11:36 am 
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I'm with you JoPa, until I was on the pill, my periods were horrific. My teenage years were a constant concern of having to deal with the hellish, heavy 2 week periods that showed up randomly. My periods still aren't so great but better. Like I've been using Dear Kates underwear as extra coverage because there is no way I can't have extra coverage and then there is talk of people only needing period pantaloons. Hell no, I would have to change ever hour on my heavy day if that was the case, if that. I'm envious of people who bleed 2 tbsp worth per month or whatever I read is 'normal'.

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 Post subject: Re: Infertility anyone?
PostPosted: Wed Dec 02, 2015 11:41 am 
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Well, right now, I'm pretty envious of anyone with a period. I didn't love mine when I had it (I always had really awful cramps, and I never made friends with tampons or menstrual cups, despite years of trying), but I sure wish it would come back. I should maybe have been clearer that when media makes out menstruation to be this universal womanly thing, it makes me (and probably others who don't have periods) feel pretty left out. Of course, there are many other reasons not to be into period worship or whatever (like your situation sounds pretty brutal). I'm just venting about my own personal one.

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 Post subject: Re: Infertility anyone?
PostPosted: Wed Dec 02, 2015 12:00 pm 
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ahh, I understand. Yeah I didn't have periods for various times until I got on the pill. I do hope your period comes back.

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