cinna
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Post by cinna on Feb 19, 2011 23:03:46 GMT -5
I've been searching everywhere for this message board because I knew I registered somewhere.
Anywhoo, despite spending countless hours searching the internet for anything related to my current severe endo pain I've found nothing.
During the month of July and August I was on Depo Provera (the shot). I absolutely hated it since I bled for 3 months straight like a period and the side effects just did not agree with me. But during those months I started to get some not so nice cramps that put a stop to a road trip my dad and I were wanting to do and me having to spend the best summer months (I live in Winnipeg, Canada also known as Winterpeg!) on the couch/bed, popping pills and cuddling my heating pad. But then they randomly stopped come the beginning of the school year which I was thankful for.
But then all of a sudden at the beginning of November I started to get horrible, horrible pelvic pain. As soon as my 3 months were up from the Depo Provera I went straight back to the pill (Yasmin). I had no idea I could get such severe pain while stopping my periods by continuously taking the pill.
Ever since then I've been having screaming, crying, horrific pain. I have never, ever, in my life experienced pain so bad like that. I eventually attached the name "attacks" to them because they were unpredictable and "attacked" no matter what time of day or night. The pain is so severe it wakes me up at night, even in the middle of a dream!
I've had 3 hospital visits because the pain was so bad I thought there was no way this was endo, it had to be something else. But everytime I went, they found nothing. I even had a CT done, nada. (Although during the first trip to the hospital I did have a kidney infection).
I have a hard time describing the pain, but it's very low in my abdomen that will radiate across. It'll be tight, sharp, like I'm being gutted with a knife like a fish. The pain is incredibly intense that I just can't handle and i freak out because none of the medication i had worked. I eventually got prescribed tramacet and hydromorphone, which does help. The only downside is that I have to wait at least half an hour for the pills to kick in.
I'm currently now on Alesse, and taking tramacet and hydromorphone for when I do get my attacks. I've also started taking probiotics since those pills are very constipating.
I apologize for the long post, I just thought some background info would help. I was diagnosed with endo in May of 2010. Has anyone here ever experienced such intense pain that you just want someone to knock you out? The pain also has caused me to be nauseous(sp?) a lot and I'll vomit with or without the pain. I have to wait until March to see a new gynecologist about all of this and my new family physician is doing his best to work with me to manage the pain. I had to withdraw from my university courses because of this and it's just so depressing being isolated by this pain. I just really need to reach out to someone. I thought here would be the best place.
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Post by pretty on Feb 20, 2011 15:08:25 GMT -5
yeah we're familiar! sounds like the pain I have when I have a cyst burst. but you know it's endo... so it's something with endo.... sorry it hurts so bad honey! first recommendation is try the endo diet. there are a lot of threads on it, but just to get you started, try to eliminate wheat and dairy right away from your diet, followed by soy, and non-organic meats. beware there's soy in a lot of 'healthy' foods like gardenburgers, clif bars, and stuff like that.... I swear, I went from pain like you describe to way less pain across the board, less bloating and painful BM's and just generally feel more like myself. I also lost 25 lbs just by following the endo diet, without once working out! I know. It sounds too easy.... anyhow those foods are making the inflammation worse from your endo, they are bloating you and making your constipation much worse. Where you're at, you might consider taking a couple days to really research and make a grocery list (there are threads on that too) and then when you are up to it, clean out a lot of the wheat and dairy from your kitchen and replace them with rice and corn and what have you so you can still eat something.... good luck and please message me if you want more info, don't want to rant too much, be hopeful becuase it will get BETTER! you can have your life again. i promise! Pretty
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Post by JC on Feb 20, 2011 16:02:47 GMT -5
Geez I'm so sorry it's so bad for you! It sounds so awful! The only pain I've had that sounds even comparable is when I had an IUD (mirena). That pain made me want to pass out it was so bad.
I do get those knife pains that randomly come and go but they don't stick around long enough for me to take something.
That pain you describe sounds really horrible and I wonder if there's not something else causing it? Were you told where your endo was located when you had your surgery?
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Post by chicagogal2 on Feb 20, 2011 16:03:30 GMT -5
Hi Cinna!
Well, first Welcome! Second, I'm a fellow 'Pegger born and raised and then got married and moved to the windy city so it's nice to see someone from home here!!! I know being cold is no help for the pain. I found taking a bath on my worst days would help me so much, sometimes I would call my fiancee crying from the bathtub because i was so miserable. I have never been on Depo but since moving to chicago I was put on continual birth control pills. I took zovia. I would only stop 2x a year for a bleed and that worked wonderfully for me. I have been trying to get pregnant for the past year so I'm currently not taking anything. Overall I usually only have 1 or 2 bad days during my period, the rest of the month is good so I guess I'm lucky in that regard. My gyno thinks that the pills might have caused my endo to shrink alot and I'm hoping that it stays that way though I have developed other issues with having trouble passing urine during my worst period day. Sometimes it's just finding the right pill. Also, from what I have been told probiotics are great, I take them too but I take the refrigerated capsules which are even stronger but I don't think they actually help with constipation so make sure you eat alot of prunes or greens or whatever helps to get you going. Also, Milk of Magnesia helps too or just a good 'ol XL Timmies to get things moving along ; ) Have you tried gravol for when you feel nauseated? That was always my back up plan when I didn't feel good. You can always send me a private message if you have other questions! welcome!
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Post by Karen on Feb 20, 2011 16:51:54 GMT -5
I'm sorry you're in so much pain, Cinna. It just sounds awful! We have a current member (Shannon Elizabeth) that you might want to touch base with - she recently came off Depo Provera and is having a not so good time with it. I haven't been on it myself and swore off BC a while ago so I'm sorry I can't be much help other than support you as you work to feel better. I DO, however, echo what Pretty mentioned about the diet. If you haven't tried the endo diet, it's really really REALLY worth trying! It's been far better (long term) than any pain meds I've tried. Seriously!
Hope you turn the corner soon with this!
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Post by Shannon Elizabeth on Feb 21, 2011 11:58:01 GMT -5
Hey girl...gosh...when I read that it was like reading something I wrote about myself...nearly EVERY SINGLE DETAIL is what I am currently experiencing. So I totally and completely understand your pain. I've had my period about a month straight now and I'd have to say Depo is one of the worst decisions I could have made. Go figure. So anytime you want to talk, go ahead and message me...because I can sympathize completely.
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cinna
New Member
Posts: 25
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Post by cinna on Feb 21, 2011 21:55:12 GMT -5
Thank you all for responding. Means a lot that people actually read my post! @ pretty - Endo diet eh? Hm. I may just be desperate enough to try it! I remember seeing a book about it online but I just never made the connection of what you eat to endometriosis. But I'll definitely be checking that area out after I post this. Thank you. I'm also considering to slowly start exercising to see if that'll help. @ Jenaya - I thought for sure when all this began that it had to be something else. I have never felt anything so painful in my life. But the doctor's at the hospital found nothing. I had x-rays, ultrasounds (not the vaginal one) and a CT. I'm honestly baffled. If this is truly endo I'll be more depressed than I am now. =( @ chicagogal2 - Oh wow! Small world lol. I never ever meet anyone from here on the internet. By the way, roll up the rim is on! Lol. I've been skipping my periods ever since the period I had after my surgery in May 2010. My ex-gyne was surprised that my period was worse after the surgery, she's like "it's supposed to be better!" so that's when I started to skip my periods, it was working great, and she asked me to consider Depo Provera since it was progesterone only and we all know about the meanie estrogen. But I bled for 3 months straight, one horrible never ending period. And I thought bleeding for 7 days was bad lol. So then I went right back to Yasmin, but then I saw this show on tv about Yasmin being a higher risk for like everything compared to other birth control pills so I got my family physician to switch my pill and go on Alesse since I used to be on that and it worked fine. Plus my doctor said all BP's pretty much do the same thing and that he wouldn't recommend one over the other. But between switching from Yasmin to Alesse, I got my period inbetween! Oh. My. Gawd. Awful, just awful. I was literally having contractions, like, having a baby contractions. Well, not that I know what having a baby is like, but the way i described it to my mom and they came every 5-6 minutes. All day. All night. For 3 days. I continue to get them on and off, it's very weird. I'm taking probiotics too! I tried one that was made for IBS sufferers (I've been told I have it) and it's called Tu Zen. And now I'm taking a different one that remains in the fridge as well. Tu Zen is expensive. I'll check out that Milk of Magnesia. As for the gravol, it doesn't help. The first time that happened I wanted to cry, I couldn't believe it. I have something called Maxerane, prescription medication for nausea. I got it while it the hospital and it worked much better than gravol for me. Gravol used to always work for me too. @ Karen - Thank you. Another one swearing on the diet! I really need to check that out. Meds can only do so much, for only a few hours. @ Shannon - I just responded to your private message. =P Depo is definitely one of the worst decisions I made too lol.
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Post by Shannon Elizabeth on Feb 21, 2011 22:36:26 GMT -5
Thx for replying to my PM. I just wrote you back
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Post by Tara on Feb 22, 2011 13:11:19 GMT -5
Cinna - my dear, I am in the same boat, I was up last night all night taking Dilaudid for pain, heating pad on lap, and no relief, still non today. I know exactly the stabbing pain you discribe, I have felt that before, and it does feel like someone just stabbed you, and is twisting the knife in my lower abdomine, I have not found anything that works for that pain (sorry). I am on continues BP called APRI - as my periods were a nightmare, and I still have daily pain. I am on disability as I can`t cope threw a day of work, so I understand not being able to finish your school. Oh I am from Saskastchewan - Regina to be exact. I am waiting for my referal to the pain clinic in Calgary, but you do have a pain clinic in Winnepeg, so you might want to ask your doctor for a referal there. I`m not sure what they can do, but worth a try.
Hang in there, and maybe with your bad luck lately you will win the roll up the rim to win. ( I almost bought the key chain that helps roll up the rim - from the dragons den - but instead I just break my nails). I am sending WARM big hugs your way. Tara
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cinna
New Member
Posts: 25
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Post by cinna on Feb 22, 2011 14:16:57 GMT -5
Yes it's like a knife twisting your lower abdomen! I even described it once to my brother as... I forget what they're called. Lol. Uhm, like when you twist oranges on those juicer things to make orange juice? If you were to take one of those and use it on my abdomen. I'm currently on continuous BC as well, but with Alesse. On disability, wow. I'm sorry to hear about not being able to get through work, I sure know how it feels as you read. I really hate how this has affected my life. I can always finish my degree later, but still, I have to do those classes all over again ahhhh. I'll totally have to ask my doctor about that pain clinic. I seem to be unaware of what my city has. I just think it's lil' ol' Winnipeg. I had to use my teeth yesterday to roll up the rim lol. I think I've lost whatever strength I have left to roll it up. Thank you so much for sharing. And I'll definitely take those warm hugs and send ya some back as well. It's flippin' freezing out there.
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Post by Tara on Feb 22, 2011 15:16:48 GMT -5
It is freezing here as well, so warm hugs are always welcome. I also thought as I was sitting here nausiated(SP) eating my soda crackers, that I forgot to mention that if it is medications making you feel sick, I would recommend eating a carb just before your meds or with your meds. I found this works well with the nausia from my narcotics, but it also got better as my body got use to the dose. Now I have increased my dose, so I am back to feeling sick, so I eat soda crackers with them, or any other carb you can find. Hang in there.
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Post by Tara on Feb 22, 2011 15:23:21 GMT -5
Oh I also thought you might want to talk to someone at your school and see if there is some kind of medical leave or allowance for time away. It is different when you are unable to attend due to medical reasons, verses just not wanting to attend, so there may be some help there for you so that you don`t lose all your hard work. Just a thought I had, they seem to be coming in small spurts today, that must be the lack of sleep...
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Post by pretty on Feb 22, 2011 17:42:07 GMT -5
Hey ladies, try rice crackers or corn tortillas/chips for your carb with meds. Seriously. I've been off wheat for 6 months, and ate a full slice of pizza last nite.... already having pain in the gut from just that little bit of wheat.... I know it's annoying, we all have too much pain, but going off wheat, dairy, soy and most meats has improved my pain SO MUCH I have to keep ranting about it lol. Sorry to annoy, I know everyone deals with this differently
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cinna
New Member
Posts: 25
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Post by cinna on Feb 22, 2011 22:10:13 GMT -5
@ Tara - Oh you're probably right. I do get nausea after taking something. I'll definitely start doing that. Or should I say eat some rice crackers! As for school, I requested an authorized withdrawal due to medical reasoning. I was actually just granted permission for that so I'm very thankful for that since they kept requesting more info from my doctor about my condition. But I felt very strongly about keeping things private, what I'm going through is personal and they don't need to know every detail. I also got permission from the committee to take a course by distance education this summer. And I'm currently taking a history course online (bleh history) which I need for my english requirement for my degree. @ pretty - I was checking out your thread last night about the endo diet. I have committment issues (lol) and this diet seems hard to follow and I'm a picky eater and I'd like to slowly start doing things (money permitting) but it's tough. Is the endo book worth buying?
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Post by pretty on Feb 22, 2011 22:52:53 GMT -5
I never bought it Cinna. I just made a list of what not to eat and have been tweaking it ever since.
Anybody buy the endo diet book who can comment?
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