Endo? Hormones? What could it be?
Feb. 23rd, 2010 12:30 pm![[identity profile]](https://www.dreamwidth.org/img/silk/identity/openid.png){kind=small}
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vaginapaginaAt the risk of sounding "omgeez plz halp," I'm really desperate for advice, suggestions, or even just support so I'll stop stressing. I feel so alone in dealing with all this.
The problems I'm having started about 10 years ago when I first began menstruating. I've had numerous diagnoses, none of which seem to be right. I'm really tired of getting the run around from doctors, and I think the fact that they can't figure out what is wrong with me is intensifying my anxiety about this.
So here's the details:
The basics: I'm 24, 5'3", 125 pounds, and moderately active (exercise about 3 times a week, mostly cardio). I also eat a pretty healthy diet, lots of fruits and veggies and rice. No caffeine, alcohol, tobacco, or other substances.
I first started my period when I was 13, and it was extremely irregular, only coming about every 2-3 months. I also had severe acne. When I was 15 I started BC pills (Ortho tri-cyclen low). It regulated my periods, but I still had a problem with acne. I also had severe pain in my lower left abdomen right before my period started. After four years of religiously taking that pill, one month (April 2004) I had a period and didn't stop bleeding for 3 months. During that time, I was put on several BC pills to stop the bleeding, but nothing helped. My frustration grew; the doctors didn't understand why I wouldn't stop bleeding. Eventually I said "forget it!" and went off all the pills on my own. Within a week, I stopped bleeding, but I also didn't get my period again for the rest of that year. The pain went away as well.
In January 2005, I started the Nuva ring. This seemed to cure all my problems. My periods were extremely punctual. My skin cleared up and was nearly flawless. However, the bleeding and pain were more intense, but I dealt with it because the other benefits were so amazing. I used the Nuva ring for the following 3 years.
Then in January 2008, I became pregnant while on the Nuva ring even though I had ALWAYS used it properly. Unfortunately, I didn't know I was pregnant until February 22, 2008. On the previous Sunday (2/17/08), I had taken out the ring for my period to start, but it didn't come that week. On 2/22/08 I began having severe pain in my lower abdomen and started bleeding heavily. The pain was so excruciating that I couldn't even walk. I was also continuously vomiting and dehydrated. I was taken to the ER, and it was there that I learned that I was pregnant. An ultrasound was performed, and it showed that I had a miscarriage. I didn't have a D&C.
At that time I didn't have a regular OB-GYN, so I followed up with a doctor recommended by the hospital. She didn't do anything except put me on a new BC pill, Femcon Fe, that I was to start taking immediately. Basically, I stayed sick for the next month and followed up with my regular doctor. Despite being on BC, every day I had spotting. My HCG levels did not return to 0 until nearly two months after the miscarriage. The spotting finally stopped when I quit taking the pill, but then I didn't have a period again until August. In July 2008, I was hospitalized again for a kidney infection that nearly killed me. A week after that, I again experienced intense abdominal pain in the same location, and after another ultrasound, it was discovered that my ovaries were covered in cysts, some of them quite large, and one had ruptured, causing the pain. I started another new BC pill (can't remember the name) and started having normal periods again in August. I began having other side effects though, like nausea, and in November 2008 I decided I was done with BC and decided to stop it altogether. I haven't been on any form of BC since then.
In January 2009, I had my first post-BC period. It was extremely light and only lasted 4 days. This continued until April. I finally saw a new OB-GYN at that time. She did an ultrasound and told me that I have PCOS. After that, I learned that there are other tests she should have performed to confirm this diagnosis. Instead, she told me she would see me next year. Frustrated with the traditional medical industry, I turned to more natural approaches. I began using Arbonne Prolief progesterone cream. It regulated my periods, but they were rather heavy. I thought this was a side effect of the cream, so I stopped it in August 2009. I saw another new OB-GYN in November 2009 for a second opinion. He also did an ultrasound as well as several blood tests. My PAP and ultrasound all came back normal, no cysts this time. My thyroid was also normal. My testosterone level was within the normal range, but a little on the high side. He concluded that I most likely have endometriosis. I'm not quite comfortable yet with getting the surgery to confirm if this is my problem. He started me on Aldactone to help with my acne and hair loss. I'm not sure when the hair loss problem started. I think my hair falls out at a normal rate; it's just not growing back. Now I'm balding at the front of my hairline (bangs area). He also gave me Napralean to manage the pain I get with my periods.
I keep very close track of my cycles. In 2009, they ranged from 25 to 45 days, with periods lasting between 8-10 days. Most of the time, the bleeding is very minimal, usually just spotting. Generally I just use a pantyliner for the entire course of my period.
My period skipped in December, came in January, and appears to be skipping this month as well. My last period was January 5, 2010; I started spotting this past Sunday, but that went away already. When my period is very light, or doesn't come at all, I do not experience any pain. The pain only occurs when I'm actually bleeding. My acne and hair loss have not improved either since starting the Aldactone.
On top of all this, I, supposedly, have gallbladder disease. Whenever I eat, I get incredibly nauseous. Sometimes I vomit, but most of the time I'm able to keep it down and will just have a lot of gas and bloating. An ultrasound showed that the wall of my gallbladder is too thick. Today I had a HIDA scan test to measure how much my gallbladder is functioning. My doctor said I'm most likely going to have to get it removed, and the thought of this completely terrifies me.
I'm completely overwhelmed by all of this. I'm young and should be more healthy. Dealing with all of these problems in my downstairs regions is really upsetting me. My primary MD and GYN both want me to have the test for endometriosis. I just don't know because I'm not convinced I have it and don't want to go through an unnecessary procedure. I'm also panicking that I won't be able to have kids. My husband and I are not ready for kids right now but really want them when the time is right.
If anyone has insight as to what may be going on with me, it would be greatly appreciated! I feel it's evident I have some type of hormonal problem, but can't pinpoint what it could be. I'm really lost and don't know where to turn. Thank you in advance to those who took the time to read this and try to help me out.
The problems I'm having started about 10 years ago when I first began menstruating. I've had numerous diagnoses, none of which seem to be right. I'm really tired of getting the run around from doctors, and I think the fact that they can't figure out what is wrong with me is intensifying my anxiety about this.
So here's the details:
The basics: I'm 24, 5'3", 125 pounds, and moderately active (exercise about 3 times a week, mostly cardio). I also eat a pretty healthy diet, lots of fruits and veggies and rice. No caffeine, alcohol, tobacco, or other substances.
I first started my period when I was 13, and it was extremely irregular, only coming about every 2-3 months. I also had severe acne. When I was 15 I started BC pills (Ortho tri-cyclen low). It regulated my periods, but I still had a problem with acne. I also had severe pain in my lower left abdomen right before my period started. After four years of religiously taking that pill, one month (April 2004) I had a period and didn't stop bleeding for 3 months. During that time, I was put on several BC pills to stop the bleeding, but nothing helped. My frustration grew; the doctors didn't understand why I wouldn't stop bleeding. Eventually I said "forget it!" and went off all the pills on my own. Within a week, I stopped bleeding, but I also didn't get my period again for the rest of that year. The pain went away as well.
In January 2005, I started the Nuva ring. This seemed to cure all my problems. My periods were extremely punctual. My skin cleared up and was nearly flawless. However, the bleeding and pain were more intense, but I dealt with it because the other benefits were so amazing. I used the Nuva ring for the following 3 years.
Then in January 2008, I became pregnant while on the Nuva ring even though I had ALWAYS used it properly. Unfortunately, I didn't know I was pregnant until February 22, 2008. On the previous Sunday (2/17/08), I had taken out the ring for my period to start, but it didn't come that week. On 2/22/08 I began having severe pain in my lower abdomen and started bleeding heavily. The pain was so excruciating that I couldn't even walk. I was also continuously vomiting and dehydrated. I was taken to the ER, and it was there that I learned that I was pregnant. An ultrasound was performed, and it showed that I had a miscarriage. I didn't have a D&C.
At that time I didn't have a regular OB-GYN, so I followed up with a doctor recommended by the hospital. She didn't do anything except put me on a new BC pill, Femcon Fe, that I was to start taking immediately. Basically, I stayed sick for the next month and followed up with my regular doctor. Despite being on BC, every day I had spotting. My HCG levels did not return to 0 until nearly two months after the miscarriage. The spotting finally stopped when I quit taking the pill, but then I didn't have a period again until August. In July 2008, I was hospitalized again for a kidney infection that nearly killed me. A week after that, I again experienced intense abdominal pain in the same location, and after another ultrasound, it was discovered that my ovaries were covered in cysts, some of them quite large, and one had ruptured, causing the pain. I started another new BC pill (can't remember the name) and started having normal periods again in August. I began having other side effects though, like nausea, and in November 2008 I decided I was done with BC and decided to stop it altogether. I haven't been on any form of BC since then.
In January 2009, I had my first post-BC period. It was extremely light and only lasted 4 days. This continued until April. I finally saw a new OB-GYN at that time. She did an ultrasound and told me that I have PCOS. After that, I learned that there are other tests she should have performed to confirm this diagnosis. Instead, she told me she would see me next year. Frustrated with the traditional medical industry, I turned to more natural approaches. I began using Arbonne Prolief progesterone cream. It regulated my periods, but they were rather heavy. I thought this was a side effect of the cream, so I stopped it in August 2009. I saw another new OB-GYN in November 2009 for a second opinion. He also did an ultrasound as well as several blood tests. My PAP and ultrasound all came back normal, no cysts this time. My thyroid was also normal. My testosterone level was within the normal range, but a little on the high side. He concluded that I most likely have endometriosis. I'm not quite comfortable yet with getting the surgery to confirm if this is my problem. He started me on Aldactone to help with my acne and hair loss. I'm not sure when the hair loss problem started. I think my hair falls out at a normal rate; it's just not growing back. Now I'm balding at the front of my hairline (bangs area). He also gave me Napralean to manage the pain I get with my periods.
I keep very close track of my cycles. In 2009, they ranged from 25 to 45 days, with periods lasting between 8-10 days. Most of the time, the bleeding is very minimal, usually just spotting. Generally I just use a pantyliner for the entire course of my period.
My period skipped in December, came in January, and appears to be skipping this month as well. My last period was January 5, 2010; I started spotting this past Sunday, but that went away already. When my period is very light, or doesn't come at all, I do not experience any pain. The pain only occurs when I'm actually bleeding. My acne and hair loss have not improved either since starting the Aldactone.
On top of all this, I, supposedly, have gallbladder disease. Whenever I eat, I get incredibly nauseous. Sometimes I vomit, but most of the time I'm able to keep it down and will just have a lot of gas and bloating. An ultrasound showed that the wall of my gallbladder is too thick. Today I had a HIDA scan test to measure how much my gallbladder is functioning. My doctor said I'm most likely going to have to get it removed, and the thought of this completely terrifies me.
I'm completely overwhelmed by all of this. I'm young and should be more healthy. Dealing with all of these problems in my downstairs regions is really upsetting me. My primary MD and GYN both want me to have the test for endometriosis. I just don't know because I'm not convinced I have it and don't want to go through an unnecessary procedure. I'm also panicking that I won't be able to have kids. My husband and I are not ready for kids right now but really want them when the time is right.
If anyone has insight as to what may be going on with me, it would be greatly appreciated! I feel it's evident I have some type of hormonal problem, but can't pinpoint what it could be. I'm really lost and don't know where to turn. Thank you in advance to those who took the time to read this and try to help me out.
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(frozen) no subject
Date: 2010-02-23 05:35 pm (UTC)Instead of asking the internet to diagnose you.
Just a thought.
(frozen) no subject
Date: 2010-02-23 05:44 pm (UTC)(frozen) no subject
Date: 2010-02-23 06:10 pm (UTC)(frozen) no subject
Date: 2010-02-23 06:21 pm (UTC)(frozen) Maintainer Note
Date: 2010-02-24 02:37 am (UTC)We're commenting because we're concerned that your comment isn't in keeping with VP policy.
Dismissing the OP's entire post as simply "asking the internet to diagnose you" is dismissive and unhelpful, and implies that the post isn't appropriate for VP, which is far from the case. We encourage VP members to share their experiences with one another, as the OP has asked other members to do here.
Please consider this a warning as well as a friendly reminder to take this opportunity to review VP's policies. You can find more information on safe space (http://www.vaginapagina.com/index.php?title=VaginaPagina_FAQ#What_is_.22Safe_Space.22.3F_What_does_.22empowerment.22_mean.3F) in our FAQ (http://www.vaginapagina.com/index.php?title=VaginaPagina_FAQ), as linked here:
You are more than welcome to make a post over in
Jocey
For the VP Team (http://www.vaginapagina.com/contact.php)
no subject
Date: 2010-02-23 05:45 pm (UTC)I've been through two laparoscopies so far, and will most likely need another one within a few years. I was diagnosed with endometriosis when I was 20, but I had symptoms since I was 15. The second one I had frustrated me since they didn't find visible endo, but the doctor said that my insides looked just fine so that if I wanted to get pregnant soon, there wouldn't be any issues. For that peace of mind alone, the laparoscopy was worth it. If anything, it might ease your mind. If you have any questions, feel free to ask me.
no subject
Date: 2010-02-23 05:49 pm (UTC)no subject
Date: 2010-02-23 08:17 pm (UTC)I have not conceived yet, and I am 6 days into my 13th cycle of trying. Part of it was not knowing when I ovulated(the traditional mucus and temping method was not working for me), so I got the Clear Blue Easy Fertility Monitor, and have used that for 3 cycles so far. It's a lot easier when you know you've ovulated.
Now given the fact you have a diagnosis of PCOS, I second the recommendation of seeing an endocrinologist because those guys can definitely figure something out. It could very well be a combination of PCOS and endometriosis. I know a couple of people who have both.
no subject
Date: 2010-02-23 10:07 pm (UTC)Good luck with TTC!! With my cycles so out of wack, I imagine that my ovulation is screwy too.
no subject
Date: 2010-02-23 06:52 pm (UTC)Instead of internists or OBGYN's, have you considered seeing an endocrinologist? It sounds like there are a variety of issues going on here that they may be more skilled in diagnosing and/or treating.
no subject
Date: 2010-02-23 07:00 pm (UTC)no subject
Date: 2010-02-23 07:10 pm (UTC)no subject
Date: 2010-02-23 07:25 pm (UTC)no subject
Date: 2010-02-23 10:07 pm (UTC)no subject
Date: 2010-02-23 07:48 pm (UTC)Good luck with the endocrinologist! It definitely seems that generalists aren't doing the job for you right now.
no subject
Date: 2010-02-23 10:09 pm (UTC)no subject
Date: 2010-02-23 09:03 pm (UTC)I can definitely see endometriosis as being a probable cause of all this craziness going on....but I can also definitely see it as possibly being PCOS. Both can appear similar. I would definitely make sure that PCOS is definitely ruled out because...it does sound like your case is more complicated than most, so it could be that you have both. :-/
My mom has endometriosis; I might have it as well, but I've also been diagnosed with PCOS. You mentioned that you don't think you have endo (and PCOS?), so I'm curious as to why you think you don't have either of them. If you'd be willing to answer, I'd be interested in listening.
A laparoscopy can be used in the diagnosis of both endometriosis and PCOS and in your case, does not seem to be an unnecessary procedure. Your problems in the downstairs regions sound like they are generally...intrusive? on your life. It sounds like you've had a lot of pain, off the wall periods, hormones seem to not be doing what they should, etc. You definitely need to start ruling things out, so that hopefully you can find a way to get things to be "normal" or as close to "normal" as they will become. You also need to rule things out because...if it's not endo or PCOS, you need to make sure it's not something more serious.
Having my gallbladder removed was wonderful - I had a gallstone attack in December (first day of finals! yessssss) that put me in the ER. I have IBS, so stomach issues are par for the course, but I was so nauseated that eating was a chore, I was only eating about a meal and a half a day, the smell of food was horrid, I couldn't stop running to the bathroom, etc. I did freak out the day before surgery (which manifested as a crazy cleaning spree that my roommate thoroughly enjoyed :-P), but the procedure went smoothly...when I woke up, I asked the nurses if we were about to start b/c I hadn't remembered getting into the surgery room or counting back from 10, hahaha.
They did it so that I only have 4 tiny scars (laparoscopic surgery)...none of them is any longer than a quarter; 2 of them are shorter than the width of a dime. There were no stitches...they just glued it together and then used steri-strips to hold the two sides together until the wounds healed up some (the strips start coming off in about 7-10 days)....this reduces scaring (which is better for the body). They gave me Vicodin...I was off of it 2 days after surgery...and off over the counter pain pills a few days after that. It mostly only hurt when I moved from laying down to sitting up and for the first week, I regularly had other people help me up if they were around. If I had a desk job, I could have gone back to work in about a week (instead, I have to be able to lift 60 lbs at my job, so they had me take off 3 weeks just to be sure I was healed enough...probably could have gone back after 2). I still eat a rather low fat diet as compared to before, but that's okay...I've been working steadily at losing weight since October, so low fat goes along with my plans hahaha.
Hope this book of a comment helped, heh.
no subject
Date: 2010-02-23 09:05 pm (UTC)no subject
Date: 2010-02-23 10:33 pm (UTC)You basically described all the problems I have with eating. I have to force myself to eat because it's rare that I actually feel hungry. Most of the time even the smell or site of food just disgusts me. I was diagnosed with IBS when I was in college. I took medicine for it, but it never helped any. Given the recent discoveries, I'm not sure if I really have IBS. I don't experience pain too much with this. The nausea is the most debilitating. My main concern with the gallbladder removal is that I don't quite understand how the digestive system works without it. Do you just have to limit your diet afterward? Oh, and fatty foods definitely magnify my symptoms.
I'm not entirely convinced I have PCOS or endometriosis because I don't have all the symptoms. But I guess I'm realizing that not ALL the symptoms have to be present in order for a condition to exist. Ones that I don't have are: obesity, weight gain, elevated insulin levels, high cholesterol levels,
elevated blood pressure, diabetes, skin tags, sleep apnea, skin darkening, and heavy bleeding. The only symptoms I am experiencing are: severely irregular, light, and/or missed periods, acne, hair loss, and lower abdominal pain on the left side (it's always in the same location). Maybe I just have an odd case of one or both disorders...?
no subject
Date: 2010-02-23 11:03 pm (UTC)While you do not have to entirely limit your diet after surgery, my doctors recommended that I "work my way into" eating fatty foods again. Before surgery, they wanted me on a "no to low" fat diet...I was basically eating only 5-10 grams of fat per meal. I'm still on a low fat diet (but now it's more like a max of 50 grams of fat a day), but mostly because of the fact that I wanted to be eating healthier (and because fat content does affect my IBS and acid reflux whoo!).
You may still have IBS. Like I said, digestive issues were always a problem for me...I was diagnosed in high school, after thinking for about 1.5 years that I was lactose intolerant. None of the medications helped me, but my GI doctor said it was unlikely they would anyway. Eating a more fibrous diet (along with citrucel...had to be that one as it was the "right" type of fiber) helped a lot. Avoiding triggers obviously helps. Reducing stress helps. That's pretty much it tho, eh?
Nausea was the worst while I was waiting to have my gallbladder out! It was debilitating and it was hard for my friends to watch me go through because I would eat a tiny meal and not be able to eat anything else and then start feeling like I was going to throw it all up. I hated it so much. As soon as I woke up from surgery, I was all FOOD NOW (http://edge-ofthe-sea.livejournal.com/127500.html), hahahaha....because I finally was no longer nauseated.
I certainly don't have all the symptoms of PCOS (or endo), but you certainly don't need to have all the symptoms to actually have them. Obesity/weight gain/elevated insulin/high cholesterol/high blood pressure/diabetes are all things that could come later...some times they don't come at all, if you get treated, which is yet another reason to figure out what's going on with your situation. Sleep apnea often comes from obesity and such, rather than PCOS/endo. I have the "skin patterns" of someone with PCOS, but that just means that my armpits have "slightly darker, but velvety skin". I also gained a lot of weight (about 70 lbs), but I'm still pretty sure most of that was from a medication I was on (weight gain/loss corresponded w/ going on or off or changing the dosage level of it...which I had done multiple times)...but was probably exacerbated by the PCOS. High cholesterol/BP runs in my family, but again, could be exacerbated by the PCOS. The pain always being on your left could be cysts on your left ovary and/or endometrial tissue that has left the uterus and attached itself to another organ/bone/tissue.
no subject
Date: 2010-03-04 06:33 pm (UTC)no subject
Date: 2010-03-04 07:59 pm (UTC)There is one non-surgical option, which involves taking pills containing bile salts for 2+ years...even then, they don't always get rid of the gallstones and if they do, you could still end up getting gallstones again. BUT, considering your ejection fraction, this is NOT an option for you (which is likely why your doc didn't mention it...along with its low success rate)...your gallbladder is too full up on stones, which is definitely a threat to your health.
If a stone gets stuck in one of the various ducts, it causes damage and/or infection in your gallbladder, liver, or pancreas, depending on which duct...and that is a MUCH worse problem than having surgery now. This is why he wants it out ASAP.
I understand not liking surgery...having my gallbladder out was my first knocked-all-the-way-out surgery (I did have a cyst from my arm removed and some oral surgery, both of which I was awake for)...and I'm 23. But like I said earlier, the whole process went really smooth and for surgery, it's not very hard on the body. And your body doesn't really need a gallbladder...it does need a liver and pancreas though.
I'd definitely schedule the surgery as soon as possible...not only because of the risk to your health, but also because then you will have less time to worry about it. Good luck.
no subject
Date: 2010-03-04 10:06 pm (UTC)Thanks so much for all your comments on this. It's really helped a lot!
no subject
Date: 2010-02-24 02:00 am (UTC)A laparscopy is defintely a scary thought, I was petrified before mine because it was my first real surgery and it's also scary to wonder if they won't find anything but in your case, a laparscopy is good because they can see everything and confirm what it is or move on and try to find out what's going on through other tests.
I definitely think you should see an Endocrinologist as well, i haven't seen one but I have Endometriosis (diagnosed a year ago via lap) & have heard they're great, specifically for PCOS! (figuring out if that's what you have or not!)
I know how you feel, pre-diagnosis i was going through all this pain without any hope of figuring it out then I found an Endo specialist, had the surgery, but after surgery pain got worse and i've been trying to figure out what's wrong for a year now ebcause i DON'T think it's my endo causing this, and finally having an endoscopy to see. It's hard but you should have the laparascopy done so that they can see what's going on!
no subject
Date: 2010-02-24 10:48 am (UTC)Anyway, the point is, with PCOS it's definitely common for everyone to have a different set of symptoms in varying severity. Good luck with your endo appointment! I hope you find a doctor you're more comfortable with than it sounds like you are with the ones you are seeing now.
I was also on aldactone for a while, and was unimpressed with it! Just FYI.