Help me, vp, you're my only hope!

[randomling]

So I'm having Serious Ongoing Issues with periods-related stuff and I was hoping that you guys might be able to help me get more informed and deal with this stuff better overall.


Background: I have PCOS and diabetes (type 2). My history with problem periods, usually their being extremely long, heavy, erratic and painful, is long and stressful. I've tried a number of different management solutions, but my body seemed to have "calmed down" over the past few years, and I was quite happy with my current situation of very infrequent (3-6 months apart), usually light and pain-free periods. (I also suffer from severe depression which may be relevant to some of the following.)

My recent visit to a new endocrinologist to help with diabetic control changed all that. Along with new diabetes medication, she prescribed me progesterone for one week a month to induce a withdrawal bleed. She expressed concern that my uterine lining would build up and build up and possibly that could lead to cancer - I've later learned this is called endometrial hyperplasia. (We'll leave aside for now the part where I'm still suicidal enough to not really care whether I get cancer or not.)

So I'm currently having my first withdrawal bleed, and it seems that I'm getting all the shitty symptoms I used to get, which include:
-Extremely heavy bleeding, including soaking through my pad to my underwear and jeans in the course of a 90-minute shopping trip or a 90-minute nap.
-Constant pain, sometimes gut-wrenching, sometimes just a dull ache, apparently not particularly affected by ibuprofen.
-Digestive issues (a worsening of the pain/flatulence/diarrhea triumvirate caused my one of my diabetes medicatons).

I can't do much for the digestive issues, I don't think, except take incessant diarrhea medication which I'd prefer not to do. They're not so terrible that I can't live with them. (Indeed I've been mostly living with them without complaint for 3ish years.)

But I am concerned about the heavy bleeding and the pain.

First the heavy bleeding: sometimes this seems to be about just not changing quickly enough, but when "every 90 minutes" is "not quickly enough", that's really quite exhausting and frustrating and doesn't mean I'm exactly looking forward to a good night's sleep. But sometimes this seems to be due to pad placement - eg, the blood is mostly "missing" my pad and soaking through my underwear and clothes. I can't insert anything in my vagina without pain/intense discomfort, so tampons and cups are really out as a solution, but I'm wondering if there is anything more heavy-duty out there, pad-wise for these really heavy days. I'm currently using the largest, most absorbent pads I can find from the Always range (I'm in the UK).

Then there's the pain. It really feels like ibuprofen does next to nothing for it. (I know this might be due to me not taking it regularly.) I'm reluctant to keep using nurofen plus (ibuprofen/codeine) because it tends to make me a bit groggy, but at this point I'd rather deal with the sleepiness than the constant pain. It would be great to have painkillers on prescription for this stuff, but I have had exactly no luck on getting doctors to prescribe me pain medication. So thoughts on pain meds in general and also on how to communicate how much my pain sucks to my doctor would be really welcome.

So they are the more short-term solutions: deal better with the excessive blood, manage the pain. More long-term, I'd like to get off this rollercoaster sooner rather than later. As a younger woman, I was told repeatedly that I would want kids so having my ovaries/uterus removed would be bad when I changed my mind. I'm 32 now, and I haven't changed my mind (plus I'm in no situation to support a child and don't expect that to change in the near future). So I see two options.

One is medically-induced menopause, which I know is a thing, but last I heard was not a thing that could be sustained forever.

Another is hysterectomy.

If any of you have any resources you can point me to, about either solution or any other that I haven't thought of, that would be great. Similarly, if anyone's been down the medically-induced menopause route or the hysterectomy route, and has experiences to share, I'd love to hear about them.

Thanks, everyone.

(Sorry, mods, I have no clue about your tag scheme and don't really have the spoons to investigate right now.)

Comments

[kaberett]

(Maintainer business: no need to tag! That is entirely my job :-) It would be awesome if you could swap out "insanely" ["insanely heavy days"] for something along the lines of "ridiculously" or "worryingly" or "infuriatingly". <3)

Regular bleeds. If you're on another form of hormonal birth control (HBC) there is no reason to have regular bleeds - it should prevent build-up of endometrial lining. If you're not, I'm still giving the slight side-eye to your primary care provider, and will try to do some more research on this (please nag me if I don't!).

Dealing with bleeding. If you can face handling the clean-up, one option is using washable cloth pads, which can be more finely tuned to flow rate. You say that neither tampons nor cups are a good option for you (& I am v willing to believe that <3) - I kind of wonder whether a menstrual sponge might be an option at some point in the future, due to limited structural rigidity, maybe in combination with pads? But I don't think that sounds like an immediate option.

Communicating pain to doctors. If possible, keep a pain diary for one cycle (or two cycles); ideally, note (a) numbers on a scale of 1-10 (and err on the high side: people are in general much more likely to downplay their pain than overestimate it!), e.g. "constant 2, spikes up to 5" and (b) functional impact, e.g. "I had to sit down suddenly/I had to support myself against walls more/I couldn't do xyz normal activities". Of course a pain diary that takes into account more of your life might be helpful in some respects, but that's also a huge and daunting and misery-inducing project (for me, at least), so... yeah.

Pain meds. You should be being prescribed mefenamic acid - the next step up from ibuprofen. This is an absolutely standard go-to for period pain. Or if your GP isn't willing to prescribe it, you ought to be being a pretty concrete reason as to why! (Not least because it shouldn't have the grogginess side-effect that you're getting from codeine.) I think we've already talked about why bumping up to 800mg ibuprofen/dose isn't sensible in your case? Voltarol (diclofenac) gel is something I find very useful as an as-and-when; it's available over the counter, but is cheaper to get on prescription if possible.

Heavy bleeding. You're right: that is heavy. It's heavy enough to be concerned about anaemia/blood loss (general rule of thumb is that if you're soaking through a "heavy" pad an hour, it's time to go to A&E - it sounds like you're not quite there, but definitely close enough to be cause for concern). One option your GP should be considering is tranexamic acid: it encourages blood clotting and is used routinely in management of heavy periods.

Medically-induced menopause. There's a nasal spray (Nafarelin); the suspension medium is vinegar and it is absolutely VILE stuff. Other than that you're looking at approximately monthly injections, which are a pain in the ARSE to schedule (and if you're late on a dose, you get to play the spotting/hormonal spike/etc rollercoaster all over again). You'll need HRT of some kind while you're on it to reduce the risk of osteoporosis, and even then it's the kind of approach only a consultant gynaecologist is likely to be willing to prescribe - and likely only for six months, at that. (There is some leeway here, but... it's hard to get a hold on, and is somewhat dependent on your care provider.) My opinion of medically-induced menopause is that it is FANTASTIC and LIFE-CHANGING and HUGELY POSITIVE up until it STOPS WORKING, but my consultant has no feckin' clue why it stopped worked so I think it's safe to assume I'm an edge case ;) Feel free to pick my brains more on this (here or elsewhere), or I can try to dig out DW posts describing the experience (quite a few will exist in my "med:" sub-tree of tags).

Hysterectomy. My experiences with considering this are... unusual, and unrepresentative. I will see if anyone else weighs in, then try to dig out UK-specific resources.



Please do feel free to ask follow-up questions - I'll try to get to them tomorrow.

[azurelunatic]

Hello fellow PCOS-person. I am also a non-tampon-person due to lack of flexibility.

My personal lineup of bleeding protection on the bad days goes like:
Softest toilet paper I can find, wadded up and jammed between my labia minora. It falls out into the toilet when I pee, which is about the time I'd be changing it anyway.
Long pad (sometimes US-Always, sometimes store brand), often with wings; it takes me a little longer to put that on, but it jams itself sideways less.
Underwear; I have hand-stitched (using a tapestry needle and thin crochet-cotton) washcloths/washcloths covered with soft knit to some of my underpants to either wear on their own (when I get tired of the pad chafing) or as backup (though I would probably stitch the padding to the outside if I were doing this regularly).
Cotton shorts
Skirt

Menstruation. I COULD ENTIRELY LIVE WITHOUT IT, IS WHAT I'M SAYING.

[mokie]

It's not a daytime option, but bed pads may help you at least get a decent night's sleep without worrying about jumping up every few hours to save the sheets. They're available in washable or disposable versions, and I can verify that the washable ones are pretty comfortable.

[kaberett]

I came across another thing in Boots recently - Dr White's Luxury Belt & Looped Pads, which seem like they might give more coverage? Not sure, thought I'd flag them up.