Pain management for agonizing AF cramps?

[airmide_m]

I'm hoping someone here will be able to help me find info on pain management for mega intense menstrual cramps. Right now I'm on percocet and baclofen (muscle relaxer) and still in so much pain my whole mind and body freeze up, and I can't even get up to go to the bathroom by myself. I'm open to anything natural or medication, hopefully legal and with the least intoxication possible. And a plus if I can obtain it without doctors treating me like a junkie :

I've had exploratory laproscopic surgery last year cause they suspected endometriosis but found nothing, everything is in pristine condition. Also had a couple different ultrasounds where they found nothing. Finally last summer I got my thyroid and hormones tested, I'm now on 3 grains of Armour for Hashimoto's hypothyroid and 35 mg of bioidentical progesterone cream. So far none of that has helped at all for the pain, I still spot and cramp 5-7 days before my period, still have agonizing pain the first 24 hours which tapers off and comes in waves over the next 3-5 days.

Sometimes I think I'm just a big baby or something, but I once had a root canal on the second (not worst) day and barely felt the shots in the roof of my mouth or the whole root canal, while my husband had to explain to the dentist that I was sobbing from the cramps, not from the dentist hurting me. And the pain of the laproscopic surgery was also nothing compared to the cramps, I didn't even take any pain meds after my first day out of the hospital.

This started when I got my first period at 10 and has gotten worse over the years. I've cut out caffeine, sugar, corn syrup, soy and I'm ovo-lacto vegetarian. I've tried evening primrose oil, tylenol, ibuprofen, aleve, naprosen, naproxen, tylenol codeine, darvocet, vicodin, percocet and muscle relaxers. Narcotics are the only things that even touch the pain and even then I am in agony and crying for at least the first 24 hours. When I was in the hospital they gave me...I think it was demerol? And that actually seemed to make things woosh *worse* for a few minutes and then back to the pain level I started at, rather than making anything better.

Now I use a combo of hot water bottles, vicodin or percocet and sometimes my vibrator (not penetration) can alter my perception of the cramps during the time I'm using it.

So I would tremendously appreciate any suggestions anyone might have. Also if anyone has any ideas on why I might be in this much pain I'd appreciate that too, since the doctors don't seem to be able to figure it out. Thanks in advance!

[smudge]

Oh Geez, you poor thing! I actually don't have any ideas for you, that is odd they didn't find endo; that was my first thought. I just wanted to symapthize and give you hugs and hope that someone else has some ideas for you.

[underthebluerug]

HUGE (((((hugs)))) to you!

I too had a laporoscopy for suspected endometriosis as the cause of severe menstrual pain, which I've experienced since my first period at 13 (when it was thought at first that I had appendicitis). Like you, everything was found to be pristine inside during the surgery. The endocrinologist who performed the lap said the dysmenhorrhea might be explained by "adenomyosis". My readings since then seem to indicate that this is something of a catch-all term.

In the nearly three years before having the lap, I had worked myself into top physical shape, and sought constitutional homeopathic therapy followed by an herbal regimen and acupuncture. I became a lacto-ovo vegetarian during this time (and eventually had to cut out soy because apparent overconsumption of it had caused my thyroid to enlarge. My T-hormone levels remain normal). I still have an ulcer from years of NSAID use during my period.

A couple of things seem to have helped me gain much better control of the pain over the years. They're likely to be familiar ground for you, but I dearly hope at least one might help you in some way:

--- A later doctor (could have been a midwife...?) happened to explain to me long after the lap that taking the NSAIDS (naproxen, etc.) when the pain has already arrived is useless, because the pain-causing excess prostaglandins, which the drugs block, have already been produced. She instructed me to take a bolus dose (the initial, large dose) of NSAIDs the moment I can predict my period's imminent arrival---well before I'm overtaken by the pain, and no later than when the first "warning twinges" and/or spot of blood occur. Then when the pain does move in, which should be on a lesser scale, you can treat it as needed with a smaller dose. What a difference this has made for me. Like, holy cow.

--- During my first years without meat, I went totally vegan for 6 months, partly to give my NSAID-damaged stomach lining time to heal without having any animal protein to break down. Although I found it too hard to keep up after that and went back to lacto-ovo, the change in my periods was dramatic. *Much* less blood, and the blood was thinner, odourless and an actually prettyish, pure pinky-red colour. Along with this went much less pain at the same time.

Since then, I've come to realize that it was cutting out dairy in particular that may have been the key. I had to cut out all milk products while breastfeeding my son in recent years, and when my periods returned (while I was off dairy but still BF'ing), they were dramatically less painful. Coulda' been the BF'ing hormones too, but as I have started to consume dairy again, back has come some of the pain.

HTH!

[airmide_m]

Thank you so much for the sympathy!!! That alone helps so much!!

I had a nurse suggest adenomyosis to me too, and I suppose it's not impossible. I'm going to research that a little more as far as diagnosis and treatment. I wonder how it would affect fertility too. Of course most treatments for endo and I would think adenomyosis revolve around stopping menstruation, so that's not really gonna work while I'm trying to get pregnant, and I do not want to put pregnancy off any longer than we already have. From my preliminary research it looks like it might be possible to diagnose some cases through ultrasound (which I've had two and they didn't find anything) or MRI....speaking of which I think they should have tried MRI on me before the laproscopic surgery since it's less invasive, but then they should have done the saliva and blood tests for thyroid and hormones the way I asked too..:

Everyone has told me that about NSAID's...that you have to take them *before* you expect the pain and continue through till it should be over. But considering how unpredictable my cycle is, I don't think it's safe to be taking the max dosage of whatever NSAID for that long. I start spotting with moderate to bad cramping anywhere from about day 18 on, and start my period sometime between day 26-34, and am in pain for about 5 days during my period, that could total up to 22 days every cycle!

The naturopath did suggest cutting out gluten, wheat and dairy (actually for thyroid function) but I don't think I could do that, especially not long term....as bad as the pain is I'm still not sure it's worse than cutting out cheese and icecream!

[elf]

i suffer from terrible cramps as well. something that helped years ago (i need to do it again) was seeing an energy healer. i thought, "what the heck, i'll try anything". after her healing my next couple periods were much much better.
worth a try--
E

[airmide_m]

Hm, what do you mean by energy healer? I have had a reiki treatment and also had my first level atunements years ago but haven't studied all *that* much about it or done much with it lately. I was looking for fun stuff to do locally and I noticed that there is a place that offers free reiki "clinics" with 20 minute reiki sessions....would that be similar to what you're talking about?

[Surfacing]

airmide m -- I have also used heat and a vibrator to help with cramping. Just to let you know you're not alone. I hope you find some answers. I have issues with fainting, nausea... not quite the pain issues you have but nevertheless... NOT FUN. Good luck.

[birthjunkie27]

oops, made a mistake, sorry

[airmide_m]

Emese'sMom thanks!! I've got a doctors appointment tomorrow and I'll have a lot of questions to ask them, and I'm sure they won't be at all pleased

I'm really not sure why I don't have worse nausea (maybe cause I'm phobic so won't let my body even consider it?) and I feel *very* dizzy and weak but have never fainted though frequently it seems as though being unconscious would be a blessing, at least during the first day.

At least having all these ideas and support helps a lot too! I'll let everyone know if I ever do find any answers that lead to any relief

[Starr]

I have terrible cramps that hit about every 3rd month or so. I can barely walk, get naseaus, and hurt all over. For me taking lots of hot hot baths helps relieve some pain. I also take a muscle relaxer and Tylenol 3 if I need it. I think that I am pretty good about managing the pain, unfortunately I also have IBS and that hits when I get AF. It really can make for a miserable few days.

[airmide_m]

Sorry to hear your cramps are so horrible too Starr! I've never had *too* much luck with hot baths, but I'm still greatly looking forward to moving someplace that has a nice big tub instead of this small shallow one in our apartment...that's one of the highest priorities we have when we buy a home hehe.

My husband noticed a while back that for me it seems to alternate (though not predictably) with every second month being a bit worse. Last time I was on muscle relaxers and percocet at the same time and still couldn't even stand up to get to the bathroom by myself.

I also have some bowel issues around that time. Usually I'm very constipated most of the month, and right before or the first day of my period I get diarrhea a couple of times. I used to have more bowel fluctuations, but maybe improving my diet evened things out a bit. I think constipation is also a sign of hypothyroid (though its also a sign of eating way too much cheese lol but I do eat a lot of fiber and take fiber pills too).

[lulu1213]

have you tried acupuncture/tcm? it's supposed to be great for regulating hormones and also pain management. i've had it for my sinuses and it worked wonders for that. i'm searching for a tcm practitioner now, as my cramps and heavy bleeding are returning after a recent lap. surgery, and we are also ttc.

where exactly is your pain? is it always in the same spot(s)? near your ovaries? throughout your abdomen? i have stage I endo. Before my surgery, i was having the most horrifying, life-shuddering, cramping pain throughout my abdomen. luckily, it responded to simple extra strength tylenol, but if i didn't catch it before it started it would take at least 30 mins of the worst hell on earth before the meds would kick in. i'm talking shock-inducing pain. it turns out i had endo lesions in several places on my peritoneum, an endometrioma, and other lesions behind my uterus. i also had bowel symptoms.

regarding your surgery, the fact that they didn't find anything doesn't necessarily mean you don't have endo, at least according to the internet research i've done. the lesions can be very small and they have to be looking in the right places, and at the right time. i also had a gyn tell me i could possibly have adenomyosis (i think there are some lucky women with both). do you have strange dark bleeding, or extremely heavy bleeding/clotting symptoms? i think these are symptoms of adenomyosis, in addition to the cramping.

with endo, there is not a direct correlation between severity of the disease and amount of pain. someone (like me, for instance) can have severe pain and the least invasive level of endo, or can have stage IV endo and no pain whatsoever.

i've got my suspicions about food allergies/sensitivities and cramps - i'm ordering a book called "Endometriosis: A Key to Healing Through Nutrition". endometriosis/adenomyosis are diseases the medical community knows virtually nothing about. one theory is that they are autoimmune diseases, (interesting in terms of your hashimoto's thyroid diagnosis-i'm sure it's all related somehow!)

for the cramps in general, you probably know this already, but no chocolate : , coffee, and alcohol during the time leading up to your period. try to limit intake of animal fats and refined sugars. and no tampons!

[airmide_m]

Acupuncture is a great idea. I've considered it and need to look into it more. I don't drive and we're on a budget so that's why I haven't already pursued it. I did find a few clinics that will do it low-cost but they're the type that are targeted towards people I'd be a little nervous about (drug offenders, released mental patients, troubled youth etc.)

I guess you could be right about the endometriosis. I wish I had a video instead of just pictures! I called another doctor and that was the first thing they wanted to do, another lap. Sometimes I think it's because they get better insurance payments for that than for the less invasive tests. I'd consider doing another one if we don't find any other answers but I'm reluctant to rush into a second surgery when the first didn't show anything.

My pain is worst right around my womb and right ovaries, which are pretty snug together on the right side. Sometimes it's a sharp pain but usually it feels like someone is grabbing my womb and trying to squeeze it into the size of a pea, or rolling it from the top down like a tube of toothpaste. Sometimes I get intense sharp cramps in my cervix and vagina. And usually I get a really bad backache and the pain radiates down so my legs and feet feel tingly and numb. If I try to use anything like a tampon or Instead cup or anything inside I immediately have sharp cramps till I take it out.

I don't have too much pain with sex though some, but that's unavoidable since my husband is 9.75 inches and bigger round than my wrist lol...he tries to be careful but sometimes it still feels like getting punched in the gut from the inside. The lack of pain in the "cul-de-sac" area during intercourse is what made the doctors initially discount endo. One tried to send me to a pain clinic and get pain shots in my abdominal wall to try to isolate exactly where the worst pain was coming from but insurance wouldn't cover it, and it seems a little scary to me anyway.

I had a doctors appointment yesterday that was worthless. Makes me so angry, that makes 15 docs who have been little to no help. Mostly they try to blame it on diet and exercise even though I have a very healthy diet, and I had all the same symptoms for years including when I was 130 pounds, walking every day and dancing 3 times a week. :

I've got a naturopathic appointment on Friday. They're clueless in their own way but at least less resistant to ordering tests so I can just figure stuff out on my own better.

[ericaz]

Just wondering if the person who performed your lap was a certified Pelvic Pain Specialist?? I find it hard to believe that there isn't SOMETHING causing all that pain.
Also, have you ever heard of Mayan Abdominal Massage? I've heard GREAT things about it and am considering it for myself.

History, etc. of Mayan Abdominal Massage

[lulu1213]

ericaz, the mayan abdominal massage sounds really interesting.

airmide_m, sorry to hear your appt. wasn't very productive.

i think you're right to be wary of a second lap, esp. since scar tissue can form and if you did have endo, that would be one of the first places it would start growing again.

oh those pain shots sound horrifying!

i'm going to try and find a naturopath too, at least in hopes that someone will try to figure out why this is happening... my surgery helped my symptoms, if you consider having one pain free period a help. but since then, it's been all downhill. i get frustrated with doctors because they are so content with just treating the symptoms.

good luck with your journey in search of a cure for your pain. it sounds like you are doing lots of research and being persistent. i hope you can find some relief and are feeling better soon.

[airmide_m]

Hm, I'm pretty sure he wasn't a certified pelvic pain specialist, considering I've never even heard of that! What is it? (Or I'll look it up on my own as soon as I get the chance). That sounds like someone I should have been to a LOOOOONG time ago! The doctor who did my laproscopy was just my regular OBGYN. I asked if he was experienced and he said he did TONS of that surgery. In retrospect I wonder exactly how true that is, and how much he might just have been eager for the surgery money. I guess my feeling of helplessness and urgency with the pain combined with his great bedside manner lulled me into misplaced trust. It's tough sometimes to find out what all is out there and available when the doctors themselves misguide you :

I've been wondering about massage. I heard about another type that was supposed to break up adhesions. We have a massage school about 10 minutes from here and right next to my husband's work. My friend is going there so I could ask her if they do any special types. Thanks for the tip!

[ericaz]

It might be wise to meet with someone from the International Pelvic Pain Society or at the very least a Reproductive Endocrinologist who has experience dx'ing and treating women with CHRONIC/SEVERE pelvic pain. Once you get a correct dx you can go about figuring out what kind of treatment best suits your needs. At this point you haven't even gotten that far.

I know what it's like to feel frustrated by both pain and inept doctors. That doesn't mean there aren't some out there who will know exactly what needs to be done. Don't give up hope and feel free to PM me if you want more info!

[airmide_m]

Just thought I'd put in an update....

Today is cycle day one but so far so good. Amazingly my cycle lasted 28 days and I most likely ovulated on day 14, so I'm pretty excited about that! I started getting waves of cramps Tuesday night, and then last night was worse and progressed steadily till I woke up with my period this morning.

I hate that time period where I can feel the cramping and I know my period is coming, but I can't take anything cause I'm forced to hold out some vague hope I could be pregnant, for the safety of the baby, till the pain is unbearable and I'm bleeding.

The pain is bad, but pretty bearable so far!! (keeping my fingers crossed that lasts and isn't a fluke!)

Here's the changes:
Vitanica brand vitex, daily from period-ovulation

Chelated magnesium, calcium and zinc (realized the dosage size is 3 pills and I've only been taking 1 but it was still enough to 100% relieve my (TMI!) chronic constipation) per 3 pills - (calcium carbonate and calcium gluconate 1000mg, magnesium oxide and magnesium gluconate 400mg, zinc gluconate and zinc citrate 25mg.) I'm thinking chelated might be the key, since the regular magnesium I took before never seemed to do me any good.

Green Tea - period-ovulation 16 oz mug per day (to help cervical mucus, though it may inhibit folate absorption so I don't take it after O)

Red Raspberry Leaf tea (Traditional Medicinals brand, 1,500mg) Ovulation- period, but I'm thinking if I can bear that many fluids I may take it all cycle.

Today:
Vanilla-ginger green , red raspberry leaf tea, 1 piece of candied ginger and one chocolate/candied ginger scone, 1 extra chelated mag.cal.zinc tablet, 200mg ibuprofen and 1000 mg tylenol at 8:45 AM while the pain was still bearable. Hot water bottle last night and today, alternating from my back to my tummy.

Also....my first acupuncture appointment was last Monday! They took an extensive history and only did a very brief treatment since there wasn't much time left, and since I wasn't yet positive whether or not I was pregnant.

I'm going to the local acupuncture school, so it's quite affordable! I've got 2 more appointments this week - one is a clinic for students studying for their doctorates and is specialized for "Women's health". When I called to schedule that, they thought my case was interesting so invited me to get a treatment from a doctor/teacher (for free, yay!) and have my case presented to a bunch of students. I'm going to try to go at least once or twice a week for a while.

[Starr]

Sounds pretty good. I know I go in for bloodwork next week to see if I am ovulating. If I am then I move onto a laparoscopy.

[airmide_m]

Oooh Starr, I wish you luck! Have you read this whole thread and looked into less invasive options before pursuing the laproscopic surgery? I wish I had done that and saved myself a surgery, money and a scar! Sometimes the lap is needed, but I think there are a lot of good things to try first!