Hi all,

I’m so glad this community exists! I’ve been told that it’s an excellent resource for issues like what I’m dealing with, so hopefully some of you will be able to point me in the right direction. I’m desperate for advice… I can’t keep losing a day or more per month because of this pain.

Background: I’m 25 years old, not sexually active, borderline underweight at the moment. I was diagnosed with Hashimoto’s Disease in 2009, and a pelvic ultrasound detected a few functional hemorrhagic ovarian cysts in 2008 (with a note that it maybe, possibly could also be endometriata). I currently take Synthroid and Cytomel for the Hashimoto’s and Lexapro for anxiety. The thyroid disease isn’t 100% under control yet.

I started menstruating at age 13. Since about age 14, I’ve dealt with excruciatingly painful menstrual cramps, primarily on the first day of my period. They almost always follow the exact same pattern with the only variation between cycles being the intensity of the pain. It’s like clockwork: about 5 to 7 hours after the first sign of blood, I will begin to get contraction-like cramps in my lower abdomen. These contractions come and go in waves, increasing in intensity over a several-hour period. Sometimes the pain radiates into my thighs and down my back; other times I’ll get jabs of pain in my lower pelvis and by my ovaries. It feels the way I imagine childbirth to be. I will have a wave of contraction pain, then it dies down to nothing for a minute, then pain again.

During this time, I’m totally useless. I can’t get out of bed or even function. I just lie there in a fetal position, pumping my legs (which I guess helps with the pain) until I either fall asleep or the cramps gradually die down and go away. The few times I tried to function on the first day of my period often ended badly… I’ve had near-fainting incidents, and I’ve turned pale and had hot/cold sweats as well.

Over the years, I have been to multiple gynecologists, talked to my GPs, tried different medications, and nothing has made a difference. Nor have I ever gotten any kind of diagnosis besides “normal lady cramps” and finally at age 21-ish “hemorrhagic ovarian cysts”. It took forever to get anyone to take my pain seriously. Because my period is regular as clockwork every 28 days, all the gynecologists so far have brushed it off as no big deal. I was told to take more painkillers, that cramps this bad are normal, etc. It wasn’t until maybe 2008 that I finally had a pelvic ultrasound that revealed the ovarian cysts, and even then the response was basically “we can’t do anything about it”.

Since starting treatment for the thyroid disease, my cramps have gotten a little bit better, and my period itself has shortened in duration. Still have cramps on the first day, though, and my period discomfort is beginning to hang around through days 2-3. Actually, what sucks now is that I never know how painful it will be anymore. Sometimes I get almost nothing, other times, like my most recent period, I get horrendous pain. It’s a crapshoot.

Also, since summer of 2011, I’ve started having PMDD-like symptoms as well as a general loss of appetite and weight loss. There were a few periods during which even drinking water caused my stomach to get upset. Fall 2011 was the worst, and sometimes the week prior to my periods I got borderline suicidal. This has lessened since my endocrinologist added Cytomel to my thyroid regimen. However, my most recent period has left me totally wiped out. I barely have the energy to move around and do things. I feel like I need to sleep all the time. I also have no appetite.

I have tried painkillers for the cramps, but it takes about 3-4 Advil to begin to make a dent in the pain. That, and the painkillers do nothing for the fatigue and sometimes leave me nauseous.

I know I should go see someone about this, but I have yet to find a gynecologist who isn’t a.) a jerk and/or b.) a total shill for the pharmaceutical industry. I guess I’m just afraid of being brushed off again. Seriously, every gynecologist I’ve been to thus far has done nothing but throw birth control at me and tell me that my cramps are normal and I should take more ibuprofen. I just cannot see how it’s normal to have cramps so bad that you cannot stand up, that you turn pale and get hot-cold sweats while rolling around in agony. Hormonal birth control does not work for me; I tried oral BC twice, once in my teens and once in my 20s, and it made my depression worse every time while doing nada about the pain. None of the doctors have been willing to look at my hormones (estrogen, estradiol, progesterone), the reasoning being that because the timing of my cycle is normal, all of the hormones must be normal too.

Any idea what might be causing these cramps? And where I should go from here? I’m so soured by my past experiences, I feel like trying to get a diagnosis will be an exercise in futility. I appreciate any and all advice you may have. Thanks for reading that massive wall of text!

Tagged with →  

19 Responses to Debilitatingly painful cramps on first day of period – need help finding diagnosis and treatment

  1. Eanva says:

    Your hormones *should* be double checked. It doesn’t sound like PCOS, since it sounds like you’ve been ultrasounded to look at the cysts, and the cysts in PCOS have a characteristic appearance and are typically quite numerous, though I’m not sure how thyroid disease might compound this.

    Fibroids should also have been found during an ultrasound, but if they were only looking at your ovaries they could have missed small fibroids on your uterus, and those could cause significant pain.

    And finally there is endometriosis (and its cousin adenomyosis), the third evil pain culprit, and possibly the worst of the bunch due to its difficulty of diagnosis.

    I’m having this vague memory that concurrent thyroid disease is very significant in some way for one of these, possibly PCOS? Ugh, I don’t keep up on my reading well enough for that one.

    Basically, you need to plant yourself in a gynecologists office and say, THIS PAIN IS NOT NORMAL AND I WANT HELP. Because that is the freaking truth whether the jerks will say so or not. If ultrasounds and hormone testing don’t yield much and you don’t want to leap straight into a laparoscopic surgery to explore for endometriosis or other problems, progesterone-only BC’s like depo-provera tend to be most successful for treating these issues, if you haven’t tried one of those yet.

    I’m going to go double check some stuff on Thyroid & PCOS and see what else I can find for you.

    ETA — I was right!! PCOS and hashimoto’s go hand in hand – so you should DEFINITELY have your hormones checked because this COULD be PCOS even though the cysts might not have looked typical for it. Read more here:
    http://pcos.insulitelabs.com/PCOS-and-Thyroid-Disorders.php

  2. Uuyme says:

    Thank you so much for your comment. Regarding PCOS, an endocrinologist I saw last fall thought it was a possibility, and she checked testosterone and one or two other androgens via bloodwork. They all came back perfectly normal. However, she wouldn’t look at any of the feminizing hormones. (I no longer see this endocrinologist for other reasons related to the Hashimoto’s disease)

    I think the ultrasounds were both uterine and ovarian. Looking through my old labs, it also appears I had a pelvic MRI in 2009. The only things of note were: “There are 5-6 small cysts in the left ovary up to 9.2 mm; There are 5-6 small cysts in the right ovary up to 8 mm” and IMPRESSION: “Normal uterus. Number 2 bilateral ovarian cysts. Small amount of free pelvic fluid, a nonspecific finding.” None of my doctors seemed particularly concerned by these results.

    Endometriosis has been a concern of mine since the start. I’ve brought it up with gynecologists, but the last one I saw waved it off because she said that I should be feeling pain throughout my period and should be bleeding more heavily if it were endometriosis.

    I believe you’re right about thyroid disease and menstrual issues. I’m not sure which of the Big Bad 3 it correlates to, though. I’ll be speaking to my new (and very good!) endocrinologist soon, so I can run it by her.

    I’m planning to swing by Student Health tomorrow, and I’ll inquire about their gynecological services while I’m there. I’m definitely interested in other kinds of BC’s… I just want to make sure they check my ladyhormones first before plopping me on any supplemental hormone. I don’t remember the brand of BC I took the first time, but the second time around it was Yasmin/Ocella and it was terrible for me.

    Thanks so much for all the ideas!

  3. Eanva says:

    I have surgically confirmed endometriosis, and while I have had occasional pain during other parts of my cycle, the majority of my pain problems were during the first couple days of my period – and like you, I was in a fetal position crying and unable to do anything (except crawl to the bathroom and vomit). So the pattern of your pain by no means rules out endometriosis – the doctor who said that was misinformed. Heaviness of bleeding also varies in endometriosis. Doctors who don’t understand the disease are part of why it is so hard to diagnose, and why so many women go 8-10 years in pain before they get answers.

    Also, for PCOS – you’re right, your “feminine” hormones and also insulin should be checked too. Androgens are not the only thing that has the potential to be altered by PCOS, and not everyone has high T with PCOS. It’s a pretty complex disease and no one test rules it in or out.

    I feel your pain, anyway, quite literally. I went through this process with my endometriosis, and with a chronic pain problem currently under the diagnosis “Unidentified Inflammatory Arthritis” with a speculation in the direction of RA. If you park yourself in the right office with the right frequency, they will figure your medical mystery out just to get rid of you 😛

  4. Uuyme says:

    Gah, my sympathies. Thank you for sharing your experience and symptoms; it’s frustrating to deal with doctors who don’t fully understand diseases. I’ve been in a similar boat with my thyroid disease, and it took me years to find an informed endocrinologist who was up on the latest research and willing to treat based on symptoms rather than just laboratory numbers.

    I’ll be sure to push on the endometriosis and PCOS front when I see a gynecologist. I’m slated to see my GP on Monday, and from there I should be able to get a referral to a gynecologist. I’ll ask for more thorough testing this time around.

    Oh ow. Best of luck getting a diagnosis for the chronic pain! Have they ruled out thyroid issues? When my thyroid starts slipping to the hyper or hypo side, I get muscle aches and pains that could be mistaken for arthritis. Adding supplemental T3 to my regimen fixed the pain up quickly.

    Student Health must be getting so sick of me already, haha.

  5. Eanva says:

    Oh, my thyroid’s been checked a dozen times over and declared in tippytop shape. Since my mom has RA, it’s the best lead. Hopefully one of these days it will decide to stop “hiding” and can be declared full blown RA!

  6. Uuyme says:

    Excellent! At least, good that your thyroid is in A+ shape. Sorry about the RA… hopefully they’ll be able to figure it out soon and get you onto some treatment that works. Best of luck.

  7. Ttefornia says:

    This all sounds consistent with endometriosis to me, too. I started out having very bad pain only on the first day of my cycle… then the first few days… then the week before hand… and now it’s full-time (urgh – though worst still during my bleeds!). I also have very regular cycles, and relatively normal bleeding. Not awake enough to provide you with more info than that at the moment, but by all means drop me a comment if you want more details. I can also dig out my list of Stuff I’ve Tried For Endo if that would help (I’m an unusually awkward patient, mind).

    The other point being, diagnostic delay for people with endometriosis is something like 15 years in the US, if you first show up with symptoms in your teens (frolicnaked has the exact numbers/references). The things you’re being fobbed off with sound so, so similar to things my diagnosis was delayed with. Good luck.

  8. Uuyme says:

    Oh yikes… I’m so sorry to hear that you’re dealing with full-time pain. I can only imagine how frustrating and uncomfortable that must be. My sympathies.

    Thank you for sharing your experiences. Definitely helps put mine in perspective, and it gives me something to go off of when I next see a gynecologist. I’m going to push hard to make sure I get a diagnosis this time around. I don’t want to be stuck waiting 15 or so years, especially if catching it earlier rather than later will make a difference in prognosis.

    It’s a shame that in this modern day and age, with all of the awesome medical technology out there, it still takes women so long to be given an accurate diagnosis of endometriosis. 15 years, wow.

    Thank you!

  9. Eneita says:

    I’m sorry, if a doctor told one of my sisters that they should be feeling pain throughout the period and bleeding more heavily, they’d be laughed at. Both of my sisters have endo (although one looks like she never had it at all last time her IUD was replaced). The pain you’re describing actually matches exactly what my sisters complained of and DID every single month until they were finally diagnosed. It took my younger sister about nine years and the youngest only about 3-4 since there was then immediate family history.

    Unfortunately, endometriosis tends to be diagnosed surgically. This may be what you end up having to insist on. It takes maybe a couple of hours, tops. From what I remember from one of their surgeries, they made an incision on either side of her abdomen and then in her belly button and looked around with a tiny camera after they inflated her abdomen with a gas, getting rid of any adhesions they saw. They had a fairly short recovery time. However, I had the opportunity to be present last time my youngest sister had an ultrasound and she also had ovarian cysts, so it wouldn’t be uncommon to possibly have both.

    BTW, again about the heavier period and pain through the period? From what I understand from my doctors and my sisters’ doctors, severe cases of endometriosis tend to have NO pain at all. For years my sisters kept telling me that since I had NO cramps whenever I had my period that I must have it, I would probably laugh at a doctor myself if they insisted I have to have pain with it.

  10. Uuyme says:

    Thank you for all of the information – it’s very helpful! A bit scary to think that I might have endometriosis, but at least it gives me some direction in terms of searching for a diagnosis and treatment.

    I’ve never had laparoscopy done. I remember talking about the possibility with my parents some years back, but my doctors never thought it was necessary. The pelvic MRI and ultrasounds were the compromise. I’m totally game for laparoscopy, though, if it will allow for an accurate diagnosis! Got to see if I can find a gynecologist willing to go to bat for me.

    Huh! I can see how that might happen. If the endo is severe enough, it probably scars so badly that there’s nothing left to feel pain. Yeah, my previous gynecologists insisted that endometriosis always meant severe pain. Maybe that’s typical, but it’s not always.

    Thanks again!

  11. Hteall says:

    1: Ferritin testing? For the exhaustion parts. (Low ferritin feels a lot like hypothyroidism fatigue, in my experience. If you ever have any thyroid-specific questions, thyroid‘s the other place I hang out…)

    2: Endometriosis would be something I’d be thinking of, too.

    3: Agreed, plant yourself in the room like they’d need a crowbar to move you, try to remain polite at all times, cheerfully admit that you’re a pushy patient if necessary, and basically make it so they have to be really unprofessionally rude if they want to get rid of you… Or they have to give you what you want.

    Good luck!!

  12. Uuyme says:

    Hey there! I’ve seen you around thyroid!

  13. Hteall says:

    Hi, hi! I am lousy with remembering where I see people, unfortunately. O:( Glad that I was useful!

    1: Low-normal, with Ferritin at least, tends to be Too Low, according to http://www.nlm.nih.gov/medlineplus/ency/article/003490.htm — if you’re ultra-fatigued, and your thyroid levels are halfway decent, yeah, definitely add some iron… (Take with something containing vitamin C, and avoid taking with calcium or dairy, as I recall, for best absorption.) Hopefully you won’t get an upset stomach from it! I generally don’t, though sometimes afterwards, I feel like I’m burping nails. The “gentle” capsules full of stuff were the worst for nail-burping.

    2-3: *cheers you on*

    And yeah, you probably will… *wry grin*

  14. Uuyme says:

    No worries. I’m way better with faces (and profile pictures!) than I am with names, and since the thyroid disease reared its head, my memory hasn’t quite been what it used to be.

    1.) Aha! Thank you for that link. My ferritin was in the low 20s, so it’s definitely edging toward the “way too low” end of the spectrum. I’ve only taken 2 doses of the iron supplement so far, and they haven’t upset my stomach yet, hooray. I’ll be sure to have my green tea and/or oranges around the time I take the pill to maximize its absorption. Right now I’m just taking a fairly low dose of Nature Made’s ferrous sulfate. So far so good!

    Thanks again, and I’ll see you around!

  15. Hteall says:

    Oh, gah, thyroid-exacerbated/induced brainfog/memoryglitch… It’s very sucky and you have my commiserations.

    Glad to provide the link! Also yay for lack of stomach-upset! (That sounds like the brand that was making me burp nails the most — slightly greenish capsules?) Remember to take them way apart from your thyroid meds, as the iron will interfere otherwise… (Isn’t having low thyroid and low iron, together, such fun? O:p )

    *bows* A-yup!

  16. Uuyme says:

    The thyroid brainfog has made higher education interesting… I’m just starting grad school, and boy is this not the time to have a slippery memory! I guess I’m lucky in that I always used to have a superduper photographic memory, so even though the thyroid has taken my edge away, I can still do okay with what I’ve got left.

    The version of Nature Made Iron I’m taking is just small, whitish capsules. I went with the kind that had minimal ingredients, no artificial colors or flavors or any of that jazz, and it’s a fairly low dose too. I’m taking my thyroid meds in the AM and my supplements at noon. Ah, a full day’s worth of meds!

  17. Hteall says:

    You have my utmost sympathies! I got the full brainfog after I had a kid, but trying to do any kind of college with it… Uuuuuugh. Crossing fingers that you’ll regain Da Brainz!

    (Sounds like a good schedule for the meds, at least!)

  18. Dri007 says:

    Sounds a lot like my endo. I’d definately pursue that. I started with only pain the first day or two. Now I have crippling pain for the first half of my period, and intermittent pain through my cycle. I don’t tolerate bc at all so my doc gave me menafemic acid and tramadol. The combo seems to keep my pain managble. Good luck!

  19. Uuyme says:

    Definitely will be pursuing it, and I appreciate your comment and all of the comments confirming that yes, indeed, my symptoms are consistent with possible endometriosis. It gives me some backup when I go to see a gynecologist.

    Ack, that sounds terrible, my sympathies. It’s reassuring to hear that the condition can be managed with non-BC methods, at least! Best wishes.

Leave a Reply