3

votes

excruciating pain...really messed up. PCOS, The Pill and Hormones

Answered on August 19, 2014
Created April 21, 2012 at 3:23 PM

Hello Everyone,

My last post was about me going off of the pill for the first time in 10 years and my worries about PCOS from years ago.

Well here is what has happened, I went off in the end of January...and things started out ok. My libido went up, and i was happy. Then when it came to to have my period, it never came but i still had symptoms, cramps and ravenous hunger etc.

Then another month went by, same thing, so i thought my body is just learning and i'll wait it out. Then, i started having a steady bloated abdomen and pain, my weight shot up, body fat increased, and was feeling really really lousy.

So in my mind, i decided that obviously this was a big mistake going off the pill because i had not has a period on months and was in pain and bloated and I need to go back on, because i was feeling horrible and really needed my life back.

So that is what i did.

Oh BOY did i ever screw up, I started the pill 7 days ago, and I have been completely bed-ridden, excruciating pain, bloated abdomen, unbearable hunger, terrible headaches and literally can not do anything.

I have missed the gym and am definitely retaining water, I look like i've gained 20 lbs over night. I NEVEr take pain killers but this is bad so i started to.

Oh! just so you know, I am Canadian and in the US with no insurance, I booked a ticket home to Canada for Monday as soon as the doctors offices open and will be seeing my GP, Gyno, Endo etc.

I am just writing because perhaps someone can offer solace in the meantime...

I am a wreck and so upset that I have done this.

What in god's name is happening? How can i provide relief? Other than heating pad and ibuprofen.

Also, I should mention that I started incorporating carbs back into my diet over the last month or so, just a little fruit nothing major...just went from 50g carbs per day - to between 50-100 - is this the weight gain? or is it he hormones? Is it just water retention? I am pretty freaked out about it...

How should I eat? What should I take? Should I not have gone on the pill? I am so confused..and a little nuts from these hormones :( :(

6120c989fd5b69f42a0834b69b87955b

(24553)

on April 23, 2012
at 03:36 AM

The pill made me way too crazy to even consider staying on it, I tried 3 stints with it, once for 3 years, and few times for 3 months, and it isn't for me. I'm much better at dealing with pain than with feeling nuts. I'm also guessing that my cysts don't grow nearly as fast as yours because I've only had 2 go supernova since I was diagnosed 9 years ago. If you feel better on BCPs and it suppresses symptoms that is probably a good choice for you. I read more overnight about nattokinase and serrapeptase, they look promising for helping reduce painful adhesions that might be causing your pain.

59ee717de524f921efb7f2984157339f

(871)

on April 23, 2012
at 02:35 AM

Happy Now - what do you think might be treatment without BC pills? a progesterone cream taken at a certain time of cycle to help the eggs? How have you done it with no pill? I am desperate to get off this pill..i think my partner wants to kill me from psycho hormones ie. moods. i just can't deal with the pain.

C79a5b43dfc5749200bd9dcaa6bb0858

on April 21, 2012
at 08:27 PM

GurlzLuvSteak, you may want to move your comment to the 'answer' section. Instead it looks like you're telling me I have PCOS. My 2 cents.

61844af1187e745e09bb394cbd28cf23

(11058)

on April 21, 2012
at 06:40 PM

I am able to shed more water weight by squeezing half of a lemon into hot water, then sipping like tea. It works better for me than using room temp or cold water.

Ddfdaa75ac9f47e01fc71162dd0d38dc

on April 21, 2012
at 04:00 PM

Classic PCOS here. You need treatment. You may have fibroids but I doubt it. PCOS is a serious medical condition & with deepest respect you need to act under medical supervision. Just stopping the pill on a whim wasn't the best thing to do. Please take your health seriously. Hope you feel better soon..

C79a5b43dfc5749200bd9dcaa6bb0858

on April 21, 2012
at 03:50 PM

I love what KellyBoBelly said and totally agree. Immerse yourself in a fun book or movie. Distract and entertain.

59ee717de524f921efb7f2984157339f

(871)

on April 21, 2012
at 03:44 PM

omg thank you. i will really try this...

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4 Answers

2
016de26fe61daf799662d3b7b2468324

on April 21, 2012
at 03:43 PM

I totally sympathize. That sounds horrible. :(

I also went off the pill after 10 years, and I found that I had to really mentally prepare myself for it. I'd went off before, two or three times and freaked out from the side effects so I always went back on. Fortunately I didn't suffer as bad, but I did find I had to fight hard to not let it play mind games with my head.

The best advice I can give you - 1. take lots of hot baths, with epsom salts. 2. Try to stay calm and not freak out. You're only exacerbating the situation. 3. Drink lots of lemon water. For whatever reason that always helps me with the bloating. And chamomile tea. Definitely. 4. Try really hard to take your mind off it - watch a comedy, laugh! Call old friends, write in a journal, read a good book. Try to distract yourself as much as possible until you can see your doc. 5. Maybe it sounds weird, but I'm a huge believer of mind over matter. Believe you are in control, not the hormones, and that everything is normal. Just straight up refuse to let it take over your life and mess with you like that. I get so fed up sometimes that I do that, and I feel like it works (I realize it might not for everyone but it does for me).

61844af1187e745e09bb394cbd28cf23

(11058)

on April 21, 2012
at 06:40 PM

I am able to shed more water weight by squeezing half of a lemon into hot water, then sipping like tea. It works better for me than using room temp or cold water.

C79a5b43dfc5749200bd9dcaa6bb0858

on April 21, 2012
at 03:50 PM

I love what KellyBoBelly said and totally agree. Immerse yourself in a fun book or movie. Distract and entertain.

59ee717de524f921efb7f2984157339f

(871)

on April 21, 2012
at 03:44 PM

omg thank you. i will really try this...

1
6120c989fd5b69f42a0834b69b87955b

(24553)

on April 21, 2012
at 10:33 PM

Sounds like we might be riding in the same boat, I haven't been on the pill for over a decade, but I have PCOS and have had cysts in both ovaries go totally bonkers over the last few months, and haven't been able to roll over in bed without a sharp drawing in of air from the pain for almost a month. One ruptured a few weeks ago, and after 12 hours of nausea and hell, I felt better than I had in months, and some of the swelling has started to decrease, but my waist did grow 8 inches and I put on 15 pounds in 2 months from all the swelling. Belly edema is different from gaining fat, although to the casual observer, I'm sure it looks the same. I'd rather not be back in my old maternity clothes, but this is the hand I've been dealt right now, and the self consciousness is making me a little less likely to discuss diet with friends at the moment because it probably looks like it is failing. Fibroids may also be playing a role to make it a super-sucky trifecta, I've already had a preliminary physical exam, and am getting an ultrasound this week to pinpoint exactly what has gone off the rails. It isn't unheard of for endometriosis to show up alongside PCOS and the adhesions between the soft tissues sometimes between the ovary and uterus or ovary and bladder will cause extra pain if a cyst is growing.

I doubt it is the slight upping of fruit that has done this too you, but there is the slight possibility if you have non-alcoholic fatty liver (which about half of PCOS sufferers have) and are completely fructose intolerant, that it could exacerbate things. But, I suspect not to the degree you are seeing.

The birth control pills were likely keeping your cysts from growing by inhibiting the hormone cycle that causes ovulation (or the attempt at ovulation). The pain you are feeling is likely a cyst that is either growing or twisting, and they do hurt like hell. It wouldn't hurt to take a pregnancy test too if there is any chance you could be pregnant because ectopic pregnancy can feel just like a cyst and requires more immediate intervention, barring internal bleeding, cysts are often a wait and see thing.

Castor Oil packs on the belly are often recommended to help with the cysts. I've been reading about nattokinase (derived from natto) that is supposedly helpful in reducing/preventing fibrous tissues in the body that fibroids, adhesions, and cysts are made of, but I don't know enough about it yet to hands down recommend it, or even know what dose might be good. I've had several cysts spontaneously rupture and resolve after swimming in the ocean a lot, I don't know if it was the sun, the margarita's, the seafood, the surfing, or the electrolytes from the sea water both swallowed, forced up my nose from falling off the surfboard, and absorbed, but it seemed to bring something to a head so it could heal, which makes me think sea salt and Epsom Salt baths are probably a good idea. I'm not in too much pain unless I twist, but if you are in a ton of pain, they would probably prescribe something for it if you popped into an urgent care clinic or ER, they might even have an ultrasound machine there to see what the problem is.

Going back on the pill will probably halt further growth in what you've got going on, but it likely won't reduce it, so definitely get thee to a doc once you get home to get down to the root of the problem. But I also think the BCP's as the only treatment for PCOS is just delaying dealing with the inevitable, it halts the symptoms, but doesn't get to the root of cause, and is kind of lazy doctoring in my opinion. But if your symptoms are debilitating, and you are able to keep them under control with hormonal birth control, it might not be the worst idea.

It would be interesting to hear from other paleo PCOS ladies out there about this. I am wondering if we need to scrutinize any aspects of the diet to see if it might contribute to sudden growth of cysts and fibroids, and whether that is a sign of healing or worsening of the PCOS. I partly suspect that it is a transient side effect of liberating stored fat, and the environmental contaminants and estrogen contained therein. As much as I loooooooooooooooove animal fat from "clean" animals, I am wondering if the insulin resistance, tendency to produce more androgens from retinoids in the diet, sub-fabulous liver function, etc., it could also contribute to things going sideways with hormone sensitive growths in the reproductive tract. There is the "what other option is there?" question, at least for me because only an animal fat, red meat, fish, and greens centered diet seems to have resolved a lot of other metabolic syndrome issues, and seems to be the only way I actually shed weight, is there a rabbit hole we must go through, where hormones will be temporarily disregulated, and then we come out the other side healed, but having grown some benign tumors to sequester bad stuff to get there? And if so, do those need to be surgically removed, or will the lymphatic system resolve them as healing progresses?

59ee717de524f921efb7f2984157339f

(871)

on April 23, 2012
at 02:35 AM

Happy Now - what do you think might be treatment without BC pills? a progesterone cream taken at a certain time of cycle to help the eggs? How have you done it with no pill? I am desperate to get off this pill..i think my partner wants to kill me from psycho hormones ie. moods. i just can't deal with the pain.

6120c989fd5b69f42a0834b69b87955b

(24553)

on April 23, 2012
at 03:36 AM

The pill made me way too crazy to even consider staying on it, I tried 3 stints with it, once for 3 years, and few times for 3 months, and it isn't for me. I'm much better at dealing with pain than with feeling nuts. I'm also guessing that my cysts don't grow nearly as fast as yours because I've only had 2 go supernova since I was diagnosed 9 years ago. If you feel better on BCPs and it suppresses symptoms that is probably a good choice for you. I read more overnight about nattokinase and serrapeptase, they look promising for helping reduce painful adhesions that might be causing your pain.

0
253e7199dd58f0503ce122384ea7a08c

(0)

on July 16, 2013
at 03:06 AM

I was diagnosed with PCOS in 1999.

After YEARS of BCP's I ended up with blood clots ending in stroke!!!!!

It's super serious to get off all BCP's as soon as you can. Now as for the PCOS - yes, BCP's do make life easier and less painful. There are alternatives thought.

1/8 tsp. Progesterone cream 2 X daily, Magnesium 325 mg per day (take this one slow - cause Mag can give you diarrhea!) Serrapeptase 40,000 units 4 X's per day on an empty stomach, Nattokinase enzyme 4,000 units per day, Vit D3 5,000 IU's per day, Nascent Iodine 10 drops 4 X's per day and Curcumin all have been a blessing for me since I am now unable to take BCP's. I've seen less bloating and belly distention since I've started this regimen. Stay on the Paleo diet, keep active and hydrated. See it through!! Your body will be going through some heavy changes since you have been on BCP's for 10+ years. Give it some time to calm down. Doctors will always say BCP's are best aaaaaaand - THEY ARE WRONG!!!!!! I know this from first hand experience!!! Good luck!

PS - I hyperlinked all the exact products I use daily. More expensive than BCP's - BUT, in the long run - way more healthy. Plus, you can't put a price on your life!

0
C79a5b43dfc5749200bd9dcaa6bb0858

on April 21, 2012
at 03:48 PM

There are a ton of ladies on here with PCOS. I really hope one of them can give you some helpful info and some hope! All I can say is hold on and just take the damn drugs to get through till you get to the doc! I have endometriosis so I understand about pain. So awful and scary. If you have any friends around you, you might ask to borrow something stronger (I have a script for hydrocodone that is invaluable).

Hopefully you'll get a clearer picture once the doc can take a peak inside. It is unlikely that you'd suddenly show up with endo, so that's a positive, but it could be a cyst. Do you have a raised temperature??

Best of luck and I hope you start feeling better soon.

Ddfdaa75ac9f47e01fc71162dd0d38dc

on April 21, 2012
at 04:00 PM

Classic PCOS here. You need treatment. You may have fibroids but I doubt it. PCOS is a serious medical condition & with deepest respect you need to act under medical supervision. Just stopping the pill on a whim wasn't the best thing to do. Please take your health seriously. Hope you feel better soon..

C79a5b43dfc5749200bd9dcaa6bb0858

on April 21, 2012
at 08:27 PM

GurlzLuvSteak, you may want to move your comment to the 'answer' section. Instead it looks like you're telling me I have PCOS. My 2 cents.

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