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I'm 16 And I Might Have Endo.
My Name Is Kiara And i'm 16 Years Old. I'm A Junior In High School And I Was Told A Few Days Ago That I Might Have A Disease/Condition Called Endometriosis. I've Never Heard Of It Before And Know Little About It. I Am Eventually Suppose To Have A Laparoscopy. I'm Really Nervous And I Am Trying To Find Out As Much As I Can About This Condition. I Started My Period At The Age Of 9 But Started Having Really Bad Pelvic And Ovarian Pain A Little Over A Year Ago. I'm Just In Search Of Anyone Who Has This Condition That Could Answer Some Questions That i Have. -Thanks.
I recently had lap for my endo in July. The surgery wasn't awful... I went home that day. I did have really bad shoulder pain from the gas they put in my abdomen. Luckily, my doctor had lap surgery herself so she could give me first hand perspective. If you do have the shoulder pain, lay flat. Then the air bubble will move from pushing on your diaphragm to your tummy (where it doesn't hurt). This was a life saver! I put a heating pad on my stomach as well. I didn't have to take much pain meds at all, mostly just aleve and a non-narcotic med. I mostly felt like I had done a bunch of crunches! I had my surgery on a Wednesday and went back to work the next Tuesday. It takes a while for the air to finally dissipate, so I felt bloated for a while, but nothing unbearable. All in all, it went a lot better than I thought. But if I have to have it again I will plan to have someone who can stay with me for the first few days. It was a little difficult to get up and down --I could feel the air bubble move--not overly painful, but incredible weird!
I wasn't diagnosed until 28. I started having symptoms around 25. Nothing was done for 3 years because my doctor thought my painful cramps was from cyrotherapy that I had for abnormal cells. Finally I insisted that after 3 years this wasn't the case any more. I think it was easier to convince my (new) doctor than it may be for you because my sister has severe endo. The last six months prior to my surgery was when the cramps got unbearable and I'd miss work. I don't know how you've dealt with it for 5 years now! I would suggest either having your mom insist with your doctor that you have the surgery ASAP or seeing the specialist recommended, or maybe just a different gyno! There are a lot of women out there who suffer from this, so you aren't alone. There is all sorts of information about diets and exercise that is supposed to help, although I haven't tried any myself. Birth control is supposed to help slow the growth as well (low dose!) I think birth control really helped with me. I started to taking it at age 17 because of irregular periods. Prior to starting birth control had relatively painful cramps, but nearly non at all once I started birth control.
Good luck to you! I hope you get some relief soon. I've always felt like I've had a pretty high pain tolerance, so the surgery wasn't that bad for me. But everyone is different.
I wasn't diagnosed until 28. I started having symptoms around 25. Nothing was done for 3 years because my doctor thought my painful cramps was from cyrotherapy that I had for abnormal cells. Finally I insisted that after 3 years this wasn't the case any more. I think it was easier to convince my (new) doctor than it may be for you because my sister has severe endo. The last six months prior to my surgery was when the cramps got unbearable and I'd miss work. I don't know how you've dealt with it for 5 years now! I would suggest either having your mom insist with your doctor that you have the surgery ASAP or seeing the specialist recommended, or maybe just a different gyno! There are a lot of women out there who suffer from this, so you aren't alone. There is all sorts of information about diets and exercise that is supposed to help, although I haven't tried any myself. Birth control is supposed to help slow the growth as well (low dose!) I think birth control really helped with me. I started to taking it at age 17 because of irregular periods. Prior to starting birth control had relatively painful cramps, but nearly non at all once I started birth control.
Good luck to you! I hope you get some relief soon. I've always felt like I've had a pretty high pain tolerance, so the surgery wasn't that bad for me. But everyone is different.
Hi Lady Legacy
I am 26 years old, I was diagnosed with endo aged 22 but Doctors records suggest I had it since I was 13 when I first started my periods. The reason they say it is uncommon (especially in the UK) is because normally it remains undiagnosed until you experience issues in your late 20's. I wanted firstly to reassure you that if you do have it it is a really good thing to know because you can deal with it and get support. If you don't know you perhaps make different decisions.
I was petrified of the lap as it was my first ever op. I had kids numbing cream on my hands for the needles and cried all the way to theatre. BUT it was absolutely fine. It wasn't an experience I relish the prospect of repeating but it wasn't the worst thing that has ever happened to me either.
Best of luck. Let us know how you get on! :)
I am 26 years old, I was diagnosed with endo aged 22 but Doctors records suggest I had it since I was 13 when I first started my periods. The reason they say it is uncommon (especially in the UK) is because normally it remains undiagnosed until you experience issues in your late 20's. I wanted firstly to reassure you that if you do have it it is a really good thing to know because you can deal with it and get support. If you don't know you perhaps make different decisions.
I was petrified of the lap as it was my first ever op. I had kids numbing cream on my hands for the needles and cried all the way to theatre. BUT it was absolutely fine. It wasn't an experience I relish the prospect of repeating but it wasn't the worst thing that has ever happened to me either.
Best of luck. Let us know how you get on! :)
I was diagnosed when I was 18 with endo, but had been having problems since age 16, so I know what its like dealing with adolescent endo. I would suggest trying to find a specialist who specializes working with teens. Often teens may have "atypical endometriosis" which looks slighly different and may be more difficult to recognize (this was my case and I was told it's seen a lot in teens).
The blood in urine is interesting...are they considering the possibility of intersticial cystitis? It often has similar symptoms to endo pain-wise, but will also incle urinary symptoms. They thought I had this, but it turned out my endo was on my urinary tract. IC is simple to diagnose and they can usually give you the diagnostic cystoscopy at the time of your laparoscopy.
Best of luck <3
The blood in urine is interesting...are they considering the possibility of intersticial cystitis? It often has similar symptoms to endo pain-wise, but will also incle urinary symptoms. They thought I had this, but it turned out my endo was on my urinary tract. IC is simple to diagnose and they can usually give you the diagnostic cystoscopy at the time of your laparoscopy.
Best of luck <3
I really wish they would go ahead and do the lap. My gyno keeps sliding past the fact that i might actually have this. They found out i had ovarian cysts a little over a month ago so now that's her main focus. Although mine is findong out whether i in fact have endo as well. And that sounds great! I have yet to meet someone my age with endo. And i too have had these symptoms since the beginning of my periods, which i started at age 9.
Thank you soo much for your story. It really means a lot to me that women who are going through what i am can help me learn more. I still have not had a lap done and the pains are takins a turn for the worst. They found out i have ovarian cysts so right now they are just focusing on getting rid of those. The abdominal pain is horrible and i wouldn't wish it on anybody! But my gyno is taking all steps now to finally see if this is endo that i have, even though my mother has been saying for yrs that is in fact what i have. And if it in fact is endo, i see mine as a disease also !
After 2 years of suffering my daughter now 16 was fianlly diagnosed. She had lap done to confirm diagnosis and found it not bad at all. Took tylenol to control the pain, which was mmostly between her shoulder blades. Her symtoms from the endo are much improved. No pain but we are still trying to get the bloat under control. If you are interested in talking to her, let me know, she would love to visit with you. She too will be a Junior. Her symtoms started 6 months after her first period
it is not unusual for a 16 year old to have endometriosis. Dr. are poor at diagnosing it
Whether Endometriosis is a disease or not is up for grabs, some people say it is, some people say it's not. No one knows what causes Endo and therefore it has not been declared a definite disease. Everything is theory. Very little is known about it at this point. There is speculation that it may be part of the Autoimmune Disease family, but nothing has been confirmed.
Look up the definition of disease. I will always call my Endo a disease.
I feel diseased.. not conditioned.
I have been diagnosed with stage 4 Endometriosis since I was 17, and believed have had it since I started mensing at age 13.
I have undergone 5 Laparoscopies in the 7 years I have been diagnosed.
I have suffered from the pelvic pain, back pain, severely painful menses, crippling most of the time, painful intercourse, painful urination, diarrhea, constipation.. the whole nine yards. For several years.
And all I can tell you is.. If you do find out that you have it.. Be strong.
Every girl is different and how bad I have it is not common in girls my age according to me doctor, when my doctor, who first diagnosed me, and has done 4 out of my 5 laps, including my last one, told me when she first diagnosed me i was the worst she had ever seen in a girl my age, so i know it can happen, but I honestly don't know if it makes a difference, it is horrible no matter what. It can change the way a girl lives, it can affect everything.
I have undergone different treatments as well as prescribed meds to "relieve" mine, but really you can't relieve everything at once.
There are only reliefs from symptoms and treatment of symptoms, but there is no cure for Endometriosis.
I just had my 5th lap on July 6th, and I am still recovering.
Every girl in different about how their body reacts after surgery.
The surgery is a generally minimally invasive, pretty easy procedure. Especially just diagnostic. If the doctor removes stuff as well, the procedure is still minimal but the recovery may be a bit longer as everything has to heal.
Most of the recovery process is healing. There will be abdominal pain. There may be gas pains, which for me are hell, which is a sharp stabbing pain that goes away with rest, heat packs, and gas-x. You might have to do this for a few days. My first surgery gas pain was so bad I went to the ER. I have learned to deal with it more each time. This time I had gas pain the first day, and that was it. I guess she removed most of the gas this time. Either was I was happy.
The abdominal pain can be severe but they will give you meds and you need to take them as they instruct in make the pain stays gone most of the time. How long it will last is up to your body. Some girls are back to their normal activities the next day. It takes me more than a week to be able to function normally.
Fatigue, nausea, weakness are all things I go through after.
Make sure to drink plenty of fluids or else you will hardly be able to get out of bed some days due to dehydration, if you are too nauseated to drink, eat saltine crackers.... they are a god send.. and it makes sipping even the most bland water a little bit easier.
Drinking water was always one of my problems after, so if you don't like water make sure you're drinking gatorade, powerade, koolaid, but stay away from certain colors if they tell you too. Sometimes they do, sometimes they don't. They'll explain all of that.
Your doctor can answer pretty much any of your questions but if you have anymore questions I might be able to help with or would like to talk about it more you can message me anytime.
I hope you are in the clear, but like I said... Stay strong!! <3 <3 <3<3
Look up the definition of disease. I will always call my Endo a disease.
I feel diseased.. not conditioned.
I have been diagnosed with stage 4 Endometriosis since I was 17, and believed have had it since I started mensing at age 13.
I have undergone 5 Laparoscopies in the 7 years I have been diagnosed.
I have suffered from the pelvic pain, back pain, severely painful menses, crippling most of the time, painful intercourse, painful urination, diarrhea, constipation.. the whole nine yards. For several years.
And all I can tell you is.. If you do find out that you have it.. Be strong.
Every girl is different and how bad I have it is not common in girls my age according to me doctor, when my doctor, who first diagnosed me, and has done 4 out of my 5 laps, including my last one, told me when she first diagnosed me i was the worst she had ever seen in a girl my age, so i know it can happen, but I honestly don't know if it makes a difference, it is horrible no matter what. It can change the way a girl lives, it can affect everything.
I have undergone different treatments as well as prescribed meds to "relieve" mine, but really you can't relieve everything at once.
There are only reliefs from symptoms and treatment of symptoms, but there is no cure for Endometriosis.
I just had my 5th lap on July 6th, and I am still recovering.
Every girl in different about how their body reacts after surgery.
The surgery is a generally minimally invasive, pretty easy procedure. Especially just diagnostic. If the doctor removes stuff as well, the procedure is still minimal but the recovery may be a bit longer as everything has to heal.
Most of the recovery process is healing. There will be abdominal pain. There may be gas pains, which for me are hell, which is a sharp stabbing pain that goes away with rest, heat packs, and gas-x. You might have to do this for a few days. My first surgery gas pain was so bad I went to the ER. I have learned to deal with it more each time. This time I had gas pain the first day, and that was it. I guess she removed most of the gas this time. Either was I was happy.
The abdominal pain can be severe but they will give you meds and you need to take them as they instruct in make the pain stays gone most of the time. How long it will last is up to your body. Some girls are back to their normal activities the next day. It takes me more than a week to be able to function normally.
Fatigue, nausea, weakness are all things I go through after.
Make sure to drink plenty of fluids or else you will hardly be able to get out of bed some days due to dehydration, if you are too nauseated to drink, eat saltine crackers.... they are a god send.. and it makes sipping even the most bland water a little bit easier.
Drinking water was always one of my problems after, so if you don't like water make sure you're drinking gatorade, powerade, koolaid, but stay away from certain colors if they tell you too. Sometimes they do, sometimes they don't. They'll explain all of that.
Your doctor can answer pretty much any of your questions but if you have anymore questions I might be able to help with or would like to talk about it more you can message me anytime.
I hope you are in the clear, but like I said... Stay strong!! <3 <3 <3<3
Can you get to Atlanta there is an amazing endo specialist there-- Dr. Nehzat he is know around the world and one of the best. Here is his info:
Nezhat Medical Center
5555 Peachtree Dunwoody NE Rd
Atlanta GA 30342
http://www.nezhat.com/
I hope this helps,
achilles2
Nezhat Medical Center
5555 Peachtree Dunwoody NE Rd
Atlanta GA 30342
http://www.nezhat.com/
I hope this helps,
achilles2
so after a laparoscopy i can go home immediately? i don't have to stay in the hospital? and thank you for your story and your wishes. i hope that your life with endo gets better. may i ask what kind of symptoms did you have to go to the doc anyways?
I just had a laparposcopy on Friday, 6/29/12. I did not experience the gas in the shoulders. They made two incisions in my stomach, one in the belly button and another at the pelvic bone area.
I too was a little scared going into it, but it really wasn't too bad. I stayed in bed off and on all weekend and I came back to work on Monday. If I had to do it over again, I would have waited until Wednesday to come back to work. I felt fine Monday during the day(stomach was still a little sore but not too bad), but at night after dinner my back and chest hurt (may have been gas, not sure). Tuesday I also felt fine at work, but really tired when I got home. Wednesday was much better and I had energy for the first time since the surgery. I work a desk job so I don't have a too strenuous job.
They did find moderate endometriosis on me and were able to laser it off during the lap. I did have a little bleeding, but that may have been due to period too.
I am 31 years old, so I feel for you to go through this all at such a young age. Hopefully yours will go as smooth as mine especially since you are so young. Wishing you the best.
I too was a little scared going into it, but it really wasn't too bad. I stayed in bed off and on all weekend and I came back to work on Monday. If I had to do it over again, I would have waited until Wednesday to come back to work. I felt fine Monday during the day(stomach was still a little sore but not too bad), but at night after dinner my back and chest hurt (may have been gas, not sure). Tuesday I also felt fine at work, but really tired when I got home. Wednesday was much better and I had energy for the first time since the surgery. I work a desk job so I don't have a too strenuous job.
They did find moderate endometriosis on me and were able to laser it off during the lap. I did have a little bleeding, but that may have been due to period too.
I am 31 years old, so I feel for you to go through this all at such a young age. Hopefully yours will go as smooth as mine especially since you are so young. Wishing you the best.
Glad it's not a disease . And i have been on the medical websites recently so i have a better understanding, but i would like to talk to someone who actually has this or that has had a laparoscopy . Having to have a laparoscopy is what i'm scared of. They say it's a "band-aid" procedure but i'm terrified. Then again they say if it is Endo that i will also have to have surgery to remove the tissue. I have recently had blood in my urine (which has never happened before) and i went to the doctor and they are calling for an emergency laparoscopy and something else because they believe that the tissue is now in my bladder too. And yes ma'am , i'm only 16 yrs. old.
Endometriosis is not a disease, it's the migration of cells from the lining of the uterus into the abdomen. Please look it up on one of the medical websites like the Mayo Clinic's site. It seems unusual for a 16-year-old to have endometriosis; you might not have it. I'm glad you are in a doctor's care.
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