|
Post by jessabug on Jul 24, 2011 14:01:53 GMT -5
Hi Jennifer, I'm heading out right now so I didn't have time to read everyone else's responses, but I've had a similar experience so I'd like to share my two cents! I was diagnosed with endo a month ago and would have the same pains as you. Prior to my diagnosis, they did a CT scan and the radiologist told my doctor that I seemed to be "riddled with cysts" (those were his exact words!). Only 3 days later when I went to an OBGYN for an internal ultrasound, he saw only 2 small cysts, but lots of fluid. So we scheduled a lap and he found a chocolate cyst on my ovary (also called ovarian endometriomas I think). I looked them up, and found something about how they can cause tons of little baby cysts which then rupture... which for me explains why the radiologist saw bunches of them and then the OBGYN saw none. You sound a lot like me, and yes, you can definitely experience cysts with endo! I was told SO many times that I had gas/constipation and just got brushed off... so I know how frustrated you are! So here's my advice: if the gyno you have is good and you like her, then you should feel comfortable asking her to do a laparoscopy and I would expect that given your prior experience with endo, she should agree to it. If not, I'd suggest looking for a gyno in your area with a good rep. and trying to work with them to get to the bottom of it. Regardless, take charge of YOUR health and advocate for yourself. My doctor's RA, who is an angel in disguise, told me that the most important thing I could do for myself with endo is to advocate for myself. It is SO important that you stick up for yourself and don't let doctors push you around. Explain to them that you have been diagnosed with endo before, and that you are familiar with these symptoms, and that for you they are painful and you need to get to the bottom of it -- and that means a lap. Don't stop until they LISTEN! It took 7 years for me to get diagnosed because I didn't advocate for myself... but once I landed in the ER, I decided I'd had enough of being pushed around, and within one week I had a positive diagnosis GOOD LUCK!
|
|
|
Post by jessabug on Jul 24, 2011 14:13:51 GMT -5
ps -- i suddenly cant find where i read that bit about chocolate cysts hatching other tiny cysts, but i'll keep looking when i get home! i want to be able to show it to you..
|
|
|
Post by jenras05 on Jul 24, 2011 20:51:25 GMT -5
My vitamin D wasen't that low, just like 1 number under where its supposed to be but my doc still recommended I take a Vitamin D supplement. She didn't prescribe me anything though. I'll have to buy one. I usually take my multivitamin with food but I still get nautious usually. And then i burp up that vitamin taste all day. maybe its just best for me to get a vitamin D and a Vitamin B6 supplement. I'm on a combination birth control called Microgestin which is actually i think more estrogen than progesterone. I don't agree with progesterone too well. I once went on the shot which is all progesterone and I had hot flashes and my whole body ached so bad! So I can't have too much progesterone but I'm not supposed to have too much estrogen either because thats bad for the endo so they have to balance it out for me. My endo could be throwing my hormones off though. A naturopath is a great idea...to check my adrenal glands and hormones out would be a good idea. My sister told me to get my T3 checked too. She said that she found out she was super low in T3 but her TSH and T4 were fine. My doc did run a test on T3 and T4 but I only got the results of the T4 in the mail. I should call them and find out what the T3 test read.
|
|
|
Post by pretty on Jul 24, 2011 21:34:17 GMT -5
Jen when you see the naturopath ask about bioidentical hormones!!!!
Oh and if you are just taking D and B6 you should take a Bcomplex not just B6,ask the naturopath or your regular doc about that too. If you don't get all the B's they dont work is what I have read? Best to check with someone who knows k!
|
|
|
Post by jenras05 on Jul 25, 2011 17:32:14 GMT -5
Hi Jessabug, Thanks for your reply. I went to the gynocologist this morning and she was great! I really liked her, she was very open and straight out asked me what I wanted to get out of the visit and I told her that I was hoping to first try switching birth controls to see if that helps with the pain otherwise I would like to have another laporoscopy. She said that sounded like a good plan. So I'm going to be trying a different birth control with a different kind of progesterone to see if that helps with the pain and also take it continuously for 3 month periods so I don't have to get my period every month. The only problem is I don't have health insurance and that birth control she prescribed me was $40 a pack. So I couldn't get it but I'm going to see if the doctor at the clinic where I have a coverage and usually get my prescriptions could order me it so I can get it discounted. It really hurts not having insurance. Anyways so hopefully that helps some with the pain but if not after 3 months I'll definitely consider getting a lap if the pain is the same or worse. They did another vaginal ultrasound to see if that cyst was still there, got bigger, or went away. That cyst that I had though was only 2.4 centimeters which she said is really small and that it could be normal because ovaries normally make small cysts. I don't know why the pain is so sharp in that area though. I'm really sore now from all there poking and proding at my ovaries. Hoping I can get this birth control and hoping it helps! I definitely learned that you have to be your own advocate for endo. I learned that when I was trying to get diagnosed as well. All the doctors I saw said I was too young to have endo and that I should just take birth control. I researched though and found out about endometriosis and after reading about it knew I had it and I wanted to be tested for it. So with support from many healthboard forum ladies I researched a gyno with experience with endo and went to her even though she was 3 hours away from my home. It was worth it though because she did the laporoscopy that diagnosed my endo. Yea...its sad how little many doctors know about endo and all the myths about the disease. Endo can affect young girls but many docs believe the old myth that endo only happens in the later years. The reason for that myth is because so many women were getting late diagnoses. So I'm glad I stuck with my gut and stood up for my health. Like one lady told me on a forum..."you know your body better than any doctor" I'm glad you were able to get a diagnosis as well but am sorry it had to be so late. How are you doing now with treatment and pain?
Jennifer
|
|
|
Post by jessabug on Jul 25, 2011 23:44:12 GMT -5
That's awesome! Just a side note -- what birth control was it that was too expensive? I used to work at a pharmacy, so a couple of bases to cover before you go for a pill other than the one you want: 1) see if there is a generic version of that BC, because it's the SAME exact thing and is cheaper, sometimes by a lot!! and 2) check the pill's website (like if it's nuvaring, go to the nuvaring website) and look for coupons. Sometimes they will have promo coupons that can save you lots of money also! I can only imagine how difficult it is for you to be going through this without insurance As for your cyst, I had one exactly the same size and the OBGYN said the same exact thing to me.. I'd take that with a grain of salt because while she could be right, YOU still feel pain and you know that something is definitely going on in that area, regardless of whether it's the cyst causing the problem or not (like for me, it was that my ovary was actually stuck to my pelvic wall. Uhh, OUCH?!?!). I'm so glad you're aware of how important it is to stick up for yourself with the endo! I forgot to ask, how old are you? As for me... I had an appointment today with a new OBGYN. It's been exactly 1 month since my diagnostic lap (endo was confirmed) and things aren't looking super good but I'm staying optimistic! The OBGYN I saw today was very nice and seemed to be very well educated on the subject of endo. Of course, at the beginning of the appointment she did the usual hm-haws when I told her about my case, because she didn't have any real evidence. I told her about the pain that I'm currently experiencing and she laughed and said it was probably just premenstrual cramps. I was sure to tell her that it was most definitely NOT cramps, as I am quite familiar with those lol.. anyway, she seemed skeptical until she did my pelvic exam. It hurt again (although not as bad as it has in the past, thank god) and as soon as she pulled it out she said "yep, you're full of adhesions" and her behavior changed DRAMATICALLY -- she was suddenly very sympathetic and understanding and took me very seriously. She told me that it seems as though everything is stuck together. She said that when an exam is done, the doctor should be able to feel all the organs free-standing and palpate them, etc.... but mine felt solid, like a big clump. She's still waiting to hear from the prior OBGYN and will call me as soon as they get that paperwork and will fill me in on everything that he had been so vague about. I'm really grateful for that because I hate being in the dark... For now, the plan is to keep me on NuvaRing but on continuous cycle so that I won't have any periods. She wants to see me in 3 months unless the pain increases or the records from the OBGYN that did the surgery give her reason to want to move in a different direction. She also said that we need to exhaust all other options before resorting to surgery again, given my age (I'm 21) and my desire to have children. I'm starting to get really curious about the endo diet, and will most likely give it a shot!
|
|
|
Post by jenras05 on Jul 26, 2011 17:45:57 GMT -5
Wow..your only 21. Yea I was 18 when I got diagnosed. I however only had a few small spots of endo. However I've had lots of pain. You sound like yours was much worse than mine. What all did they see when they did the lap. You said your reproductive organs were all stuck together. That doesn't sound good. What did they say about that? That could cause problems with fertility I would think. Hopefully not for you. I know you want to have children and I also do too. I am now 24 years old and it has been 6 years since my diagnosis. I have been able to stay pain free for most of that time. I had to try a bunch of different kinds of birth control because of side effects. Progesterone doesn't agree with me and when I went on the Depo Provera shot I got really bad acheing all over my body and hot flashes and the pain didn't go away so it was way worse and I had to go off that! Birth control pills seem to work the best for me. The new birth control she just put me on is called "Lutera". It has a different form of Progesterone in it then the "Microgestin" that I was on so she wants to see if that helps with my cramping and pelvic pain. She said I could take it continuously for 3 months and not have to have my periods monthly. I should have done that before. I was able to get the prescription ordered through my clinic where I have coverage. So I was able to get it for $8.85 a pack..thank God! I still get sharp pain in that left pelvic side so I think it might be not just be due to that small cyst but maybe I have adhesions on that side attached to that ovary. When they did the vaginal ultrasound, she had a hard time seeing my left ovary so I wonder if it wasen't adhered to a surface in there. So hopefully this new birth control will help with the pain...I start it tonight. She said its a good idea to give it 3 cycles to switch over hormones completely. Your gyno was able to notice adhesions just doing a vaginal exam? Or she was just able to notice that all the organs weren't seperate? I had a vaginal exam and the gyno said she didn't feel any masses or anything abnormal. Thats what most obgyn's say is that they want to exhaust all other options before resorting to surgery. They say the more laps you have, the more scar tissue can build up. However I don't know whats worse, the endo adhesions or scar tissue. I'd think the adhesions would be worse because they cause pain. Good luck with the NuvaRing. I hope it works for you and gets rid of your pain. You can always try other birth controls if it doesn't work. Never try Lupron Depot though! Its a shot used sometimes for people with endo that puts your body into a temporary menopause. I was on it for one month and it was horrible! If the birth control doesn't work out for you, hopefully they can see about giving you another lap if your endo is really bad. Did they laser any endo when they did your lap? Do you have pictures from your lap? I was able to get pictures of my organs showing the small spots of endo. They are kind of nice to have cause they are like proof and its interesting to see what your organs actually look like inside. Trying natural methods of treatment is a good idea as well. I found lots of pain relieve also by seeing a chiropractor that focused on my whole body and my endo symptoms as being in part caused by my spine. He was able to adjust my spine and I felt relieve with the cramping as well. If you want to try that, that might help you as well...just be sure you see a chiropractor that focuses on the whole body and not just problem areas of the back. There are different types of chiropractors and I don't know the exact names. Trying that endo diet might also help you. I should maybe give that a try myself. Well take care and its nice to talk with you and have an endo sister to share stories and ideas with! Jennifer
|
|
|
Post by jessabug on Jul 26, 2011 20:30:49 GMT -5
I can't imagine how I would have felt if I had been diagnosed at 18... Probably both good and bad. You know, I bet most of us get it in our teens but it just takes so damn long to diagnose! I've had symptoms since I first started bleeding at 14 but never put all of the pieces of the puzzle together until recently! Unfortunately, I STILL don't know the details of what they saw in my lap. They were supposed to call me today, but didn't. Go figure. Is it just me, or do MD's really like to drag their feet?? I know, I know.. they have a LOT of work to do and I admire them for that. I guess I'm just grumpy today! Being tossed around by a number of docs can do that to you. Hah. All I know from my lap is that my ovary had rooted to my pelvic wall and something about that he thinks he fixed it, and I had some endo all over the rest of my abdomen. That's pretty much all he said to me, in a 30 second phone conversation, while I was suuuper drugged up on vicodin. So I'm still kind of clueless! The OBGYN that I saw yesterday is the one who said my parts seem "solid", and she didn't really do much about it other than tell me to keep taking NuvaRing... which is why I've decided to get a medical review from a specialist here in Oregon! I don't feel comfortable with the idea of doing nothing about the fact that somebody "thinks" my organs are stuck together.. haha. You definitely could have adhesions again, and if that pain is persistent you may not be wrong about the idea of it being stuck, given the nature of your ultrasound. 3 cycles sounds about right, that's usually about how long it takes for new BC's to get regular. I hope this one works out for you!! To be honest, I'm not sure if she literally felt the adhesions. She just said "you're full of adhesions," and I'd like to think that a doctor wouldn't say something like that to a patient unless they were sure! I agree that it's soooo difficult to decide which is worse, I think either way you spin it it flat out sucks. On the one hand, you're in chronic pain and discomfort, and on the other hand, you run a high risk of infertility. Poop. I WILL NEVER EVER EVER TOUCH LUPRON. I saw our thread about it. TERRIBLE!! I hope the NuvaRing works though, because I'm incredibly sensitive to other BC's with higher hormone levels --- I go absolutely apesh*t on them with terrible mood swings. They make me a complete monster I have no idea if they lasered the endo I had.. he used the word "cauterized" so I'd assume so. He did give me a picture, but when I showed it to the gyno I saw yesterday, she said she had no clue why he gave me that picture because there was nothing of significance on it (no evidence of endo or any abnormalities). Hmph! I've never heard of seeing a chiropractor for endo... I'll look into it, thanks!! Lets have a go at the diet together...? ;D I'm going to start one thing at a time. Today I waved bye-bye to dairy...
|
|
|
Post by jenras05 on Aug 3, 2011 9:50:29 GMT -5
Yea there are a lot of women who get endo at a young age, they just don't diagnose it soon enough. Most of the time its because they have really bad menstrual cramps and the doc just tells them that this is normal. But in fact having bad menstrual cramping is not normal and is a sign of endometriosis. I started my period when I was only 11, I was a little girl and was like whats going on? Its crazy how periods are beginning earlier and earlier nowadays. My mom didn't get her period till she was 18. They say it has to do with our diet though and if you have a higher in fat diet, that triggers the hormones to start the menstrual cycle. I had horrible cramps too all through my periods as a teenager. Well I've been on the Lutera for 1 week now and the cramps have gotten stronger. I hope they calm down. Maybe its the switch in hormones that my body is getting used to. I also am really tired and am getting sick of it. I told my gyno about my chronic fatigue and asked her if there is a link between chronic fatigue and endo. She said there isn't any proof yet that fatigue is linked to endo but if your in chronic pain then that can lead to fatigue. My glands have also been sore and swollen. Last week for a couple days they were really sore and swollen, so much that I swore i was getting sick. I rested and they got a little better but are still sore some. Idk...i sleep like 8 or 9 hours a night and still feel soooo tired! My eyes have bags under them and I look like I haven't gotten any sleep. My gyno said I could see an internal medicine doctor for the fatigue and maybe I should. It is interfering with my life, I try to do my homework and find it hard to concentrate because I'm so sleepy. I take a nap and sometimes it helps refresh me but just for a short while and then I'm droggy again. I used to have so much energy and now it just feels like someone sucked the life out of me. It really sucks! Anyways I'm sorry I'm going on and on about this, its just bothering me so much. It's just frustrating you know when you have to go on and do everything in your life but you don't feel 100%. I'm sure you understand. I hope the Nuva Ring works for you. And I would definitely go see that specialist, thats a good idea. I wouldn't feel comfortable knowing my organs were stuck together and doing nothing about it either.
Jennifer
|
|
|
Post by Karen on Aug 3, 2011 19:07:35 GMT -5
A lot of docs won't admit this, and a lot don't even know (shame, shame), but your adrenal glands are what help your body cope with stress. When your body is under stress of ANY kind - physical, emotional, etc., your adrenals have to kick it into overdrive. But, at some point, they can wear themselves out, and the result is adrenal fatigue or more serious adrenal issues. The result? FATIGUE! There's a whole thread about it in the related health board - look for adrenal hypofunction. I swear, it affects a good majority of us!
Good news is that your doc can check your cortisol levels (or you can order an in-home saliva test, which will give you your cortisol levels throughout the day instead of just at 8 am, which is when a typical blood test is taken). But, most of us fall within 'normal' range unless you do the saliva test... If you have an idea of where you are within the 'normal' range, though, some over the counter supplements can often help. Oh, and have the doc check your thyroid. There's a higher incidence with Hashimotos (thyroid disorder) in women with endo as they both have an auto-immune component.
I guess what I'm trying to say is the fatigue is NOT in your head, but it's just a matter of getting the right person to listen to you!
|
|
|
Post by jessabug on Aug 3, 2011 19:14:24 GMT -5
Woah Karen, that's REALLY interesting! I have always had trouble with my glands being swollen and I've always seemed to "get sick" right after or during a period of stress (finals week, something personal, etc). This is really cool information! I'm going to go google now to learn more about it
|
|
|
Post by Karen on Aug 3, 2011 19:23:54 GMT -5
|
|