|
Post by jenras05 on Jul 9, 2011 19:38:12 GMT -5
Hi Everyone,
I am new here. I am 24 years old and was diagnosed with endo when I was 18. When I was first diagnosed with endo I had cramps everyday and pelvic and lower back pain. I was put on birth control and the pain went away for the past 6 years. However just at the beginning of June my pain returned. First it started out with this strong sharp pains in my lower left pelvic area. I went in to see my doctor and she did a pregnancy test on me since my period was only spotting and wanted to make sure it wasen't a tubal pregnancy. The test came back negative but she still wanted to do an ultrasound to make sure it wasen't an early ectopic pregnancy. They did the ultrasound and found out it wasen't an ectopic preg. thank god but they did find a small cyst on the left side. My doc said that was probably the cause of my pain. Well the pain never went away and in a week and a half I called back and told her the pain was still there and strong. She said that she didn't think that small cyst could be causing me that much pain for that long. She asked if I was constipated and I'm like no. So I did some research on cysts with endo and found out that people with endo can develop what is called "chocolate cysts" which are pockets of endo blood tissue that can be very painful. I don't know if my doc knew anything about that as I don't think she knows much about endo. She prescribed me at first Naproxin which did nothing for the pain and then Tramadol which didn't do anything either. Now I've got cramps everyday as well. I'm pretty sure its my endo back again. I think I need to go back to a gynocologist and get evaluated for my endo. The real trouble is finding a gynocologist that knows and cares enough about endo to treat it. I've had my shares of unknowledgeble and uncaring doctors for my endo. I would like to have another lap to see what my endo is like now. I want to make sure I will be able to get pregnant later on. Does anyone have any experience with developing cysts with their endo? Or any advice on what I should do?
Sincerely, Jennifer
|
|
|
Post by pretty on Jul 10, 2011 1:40:00 GMT -5
Dear Jennifer -
Welcome to the board... sorry your endo is being troublesome. You are right that a certain type of doctor is useless... you need someone who understands endo for sure. Where are you located? There may be an endo specialist in your area. Have you done any searching?
I just wanted to respond and say hi, I hope you can get to look through some of the topics on finding a doctor and having a lap as well. Did you have a confirmed diagnosis with a laparoscopy? This can be useful too to let you know where your endo is located. While you're reading on here you can also look into other treatments for endo like diet, physical therapy etc. to get you working on things right away...
Anyhow welcome again, hope you find some answers! Lisa
|
|
|
Post by danniv on Jul 10, 2011 5:47:42 GMT -5
Hi jennifer!
Welcome. i too have very similar pain to what you describe. i hope you find a way out of the pain sometimes it really can be insufferable.
Danni
|
|
|
Post by hellsbells on Jul 10, 2011 6:34:58 GMT -5
Hi honey! We have a thread in the general endo board that lists endo specialists, there may be one near you?
Helen x
|
|
|
Post by jenras05 on Jul 10, 2011 22:33:24 GMT -5
Thanks to all who responded. I did have a laporoscopy to diagnose my endo in 2005. They found three small spots of endo, one on the back of my uterus, and two on the uterine ligaments. I have pictures of it. Thanks for the idea to research an endo specialist in my area. When I first had my lap I went to a town 3 hours away just to see a gyno who had experience with endo and laps. I am glad I did though. Hopefully there is a doctor in my area that has experience with endo and laps as well so I don't have to go out of my way again. I will have to check out the endo specialist you have listed in the general endo board. Thanks, Jen
|
|
|
Post by cloudyrain on Jul 11, 2011 2:57:40 GMT -5
Hello and welcome!
So many Dr really don't understand endo so it's definitely good to get one who knows what they are doing. Also, from my research, different doctors have different approaches to treatment, so I think it's a good idea to think about what you would like to do so you can take some control over the situation.
Good luck hon xxx
|
|
|
Post by jenras05 on Jul 21, 2011 19:17:56 GMT -5
Thanks for all your advice and support. I would like another laporoscopy to know if I have any more endo. I live in Fargo, ND right now and I don't know how to find a doctor that has expertise with endo. I'm seeing a gynocologist on Monday July 25th to see what she has to say about my pain and endo. I'm hoping she'll know enough about endo to help me. I might need to try switching birth controls first and if that doesn't work then I definitely think I should have a lap. I still get sharp shooting pain on that left pelvic side where they said they saw a small cyst with the ultrasound. Does anyone know about cysts with endo?? I've read they are more painful in those with endo and they can rupture and cause adhesions. I hope that doesn't happen. I am young and want to be able to have children someday.
|
|
|
Post by jenras05 on Jul 21, 2011 19:19:38 GMT -5
I also think Doctors should be more educated about Endometriosis. It is a serious disease that deserves better care and understanding from all phsicians!
|
|
|
Post by jenras05 on Jul 21, 2011 19:35:42 GMT -5
I'm also really tired a lot. I've been having to take 2 hour afternoon naps lately cause I just feel so drained like I haven't slept at all even after getting 8 hours of sleep. Is this the endo thats causing this fatigue? I've told the doctor about it a few months ago and they did a thryoid check which was normal and didn't have any idea after that.
|
|
|
Post by 1234 on Jul 22, 2011 17:26:38 GMT -5
Hi there! Sorry I'm late to welcoming.
Chronic fatigue is certainly something that we complain about, but how much of the fatigue is part of endo itself and how much is other hormonal/chemical imbalances associated with endo is sort of up in the air. I've really found a lot of relief from fatigue by adding a TON of complex vitamin B to my diet (in pill form) and also taking this wonder supplement another woman on this forum recommended--acetyl l carnitine/alpha liphoic acid. However, it seems to be different for everyone, so figuring out what the source of the fatigue is (inflammation, nutritional deficiencies, chemical imbalances) is really helpful. Do you have a doctor who will do some bloodwork for you?
|
|
|
Post by Karen on Jul 23, 2011 13:56:54 GMT -5
You mentioned a thyroid check - do you know what the actual numbers are? There's a bit of a controversy about what thyroid levels are 'normal' and what levels are actually for a person that feels 'normal'. Do you have your lab levels?
Another thing about fatigue with a chronic health issues... The part of the body that helps your body cope with stress are the adrenal glands. When they're dealing with ANY sort of stress - physical, emotional, etc. they have to work overtime to help the body cope with it. If they work overtime, they can eventually get tired and not do what they're supposed to. Have you had your cortisol levels checked?
|
|
|
Post by jenras05 on Jul 23, 2011 21:01:51 GMT -5
My TSH level was 1.64 which they say a normal range is between 0.40-5.00. My T4 free level was 1.2 which they say a normal range is 0.7 to 1.8 so they seem alright. They did a complete blood count as well and all of that was normal and all of my metabolic panel was normal. The only thing low was my Vitamin D so I just have to try and take some vitamins. What are good vitamins to take. Whenever I take the women's daily multivitamin I get nautious. I read in my endo book that B vitamins are great for energy. I actually went to the store one time to get some B vitamins, well I actually got Niacin which I didn't really know that much about. I took it and I broke out in this rash. Turns out I was taking too much. Niacin I guess is a special B vitamin that needs to be taken in small amounts otherwise it can cause this thing called "flushing" which I got, the red blotchy rash. I didn't know vitamins could react like that. But anyways, what B vitamin supplements do you take rustmyrtle? I've never had my cortisol levels checked. If I continue to have this fatigue though I should maybe go back to the doc. I'll try vitamins and that first and see if that helps. I'm also seeing a gyno on Monday so I'll mention it to her as well. Thanks for all your advice!
|
|
|
Post by pretty on Jul 24, 2011 10:53:37 GMT -5
Hey Jen!
My Vitamin D was really low and my doc prescribed for me to take 5000 mg daily to be rechecked in 6 months. There are 5000 mg pills I got at safeway. I got the clear seethru ones with oil inside them. They also had chewables but only 1000 mg.
Vitamin B complex are super important vitamins, what I read is that you need them in combination with each other. I just take my B6 with my multi and my vitamin D.
Sometimes your hormones and other things like adrenals like Karen said can get out of balance over time from endo and from taking BCP pills for a long time. Talk to your doctor about getting further information on your levels and such so you can work on balancing things out. You might need a different doc, some docs not too informed, but for me my Naturopath is great for this and can test you for lots of hormones, adrenals, even your poo to see what's really going on inside. If you bring this up to your regular doc and get brushed off, try to find a naturopath around your town... ask your friends and get recommendations. Some are great, some can be flaky, but they do have tools you may need to get to the bottom of your fatigue.... x Pretty
|
|
|
Post by Karen on Jul 24, 2011 12:13:00 GMT -5
If you get nausea from taking a multi-vitamin, try taking it with or just after food. That can help sometimes! I tend to avoid the multivitamins because you may not get the quantities of certain vitamins that you need, and if you take more of them to get the quantity that you do need, you may be getting too much of some of the others!
Sounds like your thyroid levels are well within normal, but did they test your free T3, too? T3 is the most active form that your body actually USES, and it's often ignored on a thyroid panel. TSH just measures your brain's perception of thyroid function, and T4 gets converted to T3 so most docs assume that if T4 is ok, you must be getting enough T3 from it but that's not always the case. I guess what I'm trying to say is that if the vit D doesn't make any impact with your fatigue (though fingers crossed it will!), look into getting your free T3 and cortisol levels looked at.
Oh, and I'm just reading that hormones can really do a number on fatigue, too! Any chance you're on a high progesterone or progesterone only BC pill?
|
|
|
Post by Karen on Jul 24, 2011 12:39:08 GMT -5
I meant to add: if you're looking for a good vitamin source, check out www.vitacost.com. Not only do they have an incredible selection, but they also have awesome, awesome prices. I was just looking at a complex B vitamin for myself and came across one by TwinLab that I will be trying (http://www.vitacost.com/Twinlab-Stress-B-Complex-Caps-250-Capsules#ProductDetails). I've tried a Vit C by TwinLab and although they are a bit pricier, they are VERY high quality and I'm hooked on the brand.
|
|