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16 year old, endo & lupron :-(
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16 year old, endo & lupron :-(

My daughter is scheduled for a laparoscopy next week.  She has been having severe pelvic pain for almost 4 months now.  She did have a cyst on one of her ovaries but it ruptured and she now has follicles on both of her ovaries.  The doctor is thinking she has endometriosis (my mother has it and I think I may have it also)  Is a laparoscopy the only way to diagnose?  Do they do biopsies or know just by seeing it?  This is so new to me and I think it is even scarier because it is my child.  She has been on BC for a little over a month and is still having a lot of pain and bleeding (passing clots) period for 14 days during the middle of her BC.  The doctor said that if she did have endo she would have to get Lupron injections for atleast 6 months.  How often are the injections, does it make the pain go away and what are the side effects?  My daughter is in so much pain, (she is taking a narcotic pain med around the clock) that she just wants to get it over with.  She wants the surgery right now because she is so miserable.  I'm assuming it is very painful because my daughter has a high tolerance for pain.  She broke her collar bone and didn't go to the ER until 3 days later and tore the growth plate off of her knee during a cross country race and still finished the race.  I guess I'm at a loss as to what to do.  What are the chances of her having children later down the road?  I'm so worried because she is only 16 and I guess I thougth that only older people got it.  Any feedback would be so greatly appreciated.
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298137_tn?1223311052
I wish my Mom had been so proactive when I was her age, that was almost 20 years ago and all my doctor knew to do back then was to put me on b/c when I told her how painful my periods were.  As for the lupron, it's a decision the two of you need to make together, it's not a requirement.  I've done it twice and the side effects are not at all fun, you have the normal menopausal symptoms...night sweats, hot flashes, moodiness.  It was worth it for me since it helped my endo symptoms for a while, even after the last shot.  It's a monthly injection, usually in the hip, and shouldn't be given for more than 6 months at a time.  The side effects go away when you quit taking the Lupron, so that's a good thing.  You also have to remember that because it puts your body in to a false sense of menopause you have issues like bone loss to consider, she'll need to make sure and take a calcium supplement daily...this is something else that will reverse when she's done with the Lupron.  If your main concern at this point is getting her pain free, Lupron should help with that since it deprives your body of the estrogen that endo needs to thrive.  As for the fertility later on, it's a **** shoot.  I'm trying to be brutally honest with you since I went for years and no one had the guts to lay it all on the table for me, I resent that still.  Yes, endo does effect fertility, but not all women with endo are infertile.  Endo releases chemicals into the body that create a bad environment for conception so regardless if there are adhesions or scar tissue or endometriomas that is something that she'll always have to deal with.  Luckily there are so many options for women who have trouble conceiving, IVF and IUI being the two most popular since they can bypass any endo that might be lurking around and get the semen and /or eggs right where they need to be to allow conception.  Don't lose hope, she can certainly have a full and wonderful life with endometriosis and who knows, the doc may get in there and find it's a mild case that will be easily treated!  Best of luck and keep us posted. :)
Shelley
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389909_tn?1226000452
Thank you so much for your reply and wonderful information.  I have a few questions that maybe you could answer for me.  I can't seem to find much useful info off the internet about endo, it all seems very vague.  Is doing the lap the only way to positively diagnose endo?  Or do they take biopsies to diagnose?  The doctor also mentioned she would have to take birth control  for at least 2 years, would this be done along with the Lupron injections?  Is there anything to take to counteract or make the side effects of Lupron tolerable?  How long after the first injection before you start to feel better and how long after the last injection before the pain comes back?  What is an endometrioma?  Is that just an area of endometriosis?  And also what is IUI?  You stated that you had endo 20 years ago and your profile said that you had a 14yo daughter, do you mind if I ask if you conceived naturally?  I apologize for my ignorance,  I am a nurse but I work with spinal cord and head injuries and you seem to know soooo much.  Thank you again for your help.
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301354_tn?1211814120
I was just diagnosed with endometriosis less than two weeks ago through a diagnostic laparoscopy. I'm 21. I've had to takes Tylenol 3's every period since I was 11 just to control the pain. My pain was so bad I was known to actually pass out. The doctor said as soon the the microscope went in, he could see the endo all around my uterus. I think some women have biopsies, and others they can just see it. My doctor didn't say anything about a biopsy though, just that I had to see him in 2 weeks for the operation report and to work out a treatment plan. I have one daughter, who will be 11 months old on the 25th of February, but I have had two miscarriages since I had her, 10 weeks apart. Endo doesn't prevent a woman from getting pregnant, but it can make it harder to get pregnant and to carry. My healthy babies nurse and doctor told me that the lining of my uterus got so thick that the babies most likely implanted, then slipped, causing the miscarriages. I would need fertility drugs such as estrogen just to be able to carry again. But because my miscarriages haven't officially been proven to be a result of the endometriosis, I would have to have one more miscarriage before my doctor would take that route.

Sadly, the only cure is a hysterectomy, and even that sometimes doesn't completely cure it. It has been known to come back. There is a sort of diet plan that I was told about by a member on here, so perhaps try to contact "ticked" and she can give you some information.

Good luck to you and your daughter!!
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389909_tn?1226000452
Thank you for your post.  Please let me know what your doctor tells you on your upcoming appt.  I'm sorry you are going through this also and I hate to say that it gives me a little comfort because of your age being fairly close to my daughters.  Hope that doensn't sound hateful because I'm not meaning it to.  My daughter takes Tylenol 3 around the clock, everyday, even when she is not on her period.  Her periods are so irregular though.  Her periods were always regular up until about 4 months ago.  They started going a little crazy around the time she started complaining of the pain.  She is also complaining of dizziness, nausea, she gets light headed, she doesnt' eant to eat or drink anything becasue it will make her pain worse.  She only weights 95 pounds and has lost 5 pounds already in 1 month.  Please let me know what your doctor says.  Thanks again.
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301354_tn?1211814120
I've heard that endo can also cause irregular periods. There are also different stages of endo, I think the higher the number, the worse it is, so stage 4 would be worse than stage 4. My doctor still hasn't told me what stage.

Of course it doesn't sound hateful. Until I was diagnosed, I had only known of one other person who had endometriosis in their 20's. She had a hysterectomy when she was 25, but she has two beautiful children.

What makes it worse is that nobody in my family seems to have ever had any reproductive issues, whether endo or miscarriages, but my fiance's mother had two miscarriages and two of his sisters had hysterectomies at 22 and 23, so it almost seems like I'm adopting his family's reproductive problems. I like to try and make the best of it by joking that if that isn't a sign that we're meant to be, then I don't know what is.

Whatever the outcome is, always know that there are others ways to become a mother. So many children are born without families, and they need one. I'm going to try to have one more child, and then have a hysterectomy. It is very difficult to keep up with a baby, a home child care, a part-time job and pretty much life when I'm in constant pain. I've learned to live with the daily pain, but it gets too bad when I'm on my period. I cannot even move.

I'm glad that I know what I have now. At least I can take the next step.

Good luck, and if you ever need to talk to someone, feel free to e-mail ***@****
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136956_tn?1363091289
The only way to diagnose is to do the lap.  Lesions, adhesions and endometrial cysts do not show up on US, CT-scans and MRI's unless the cyst is big  I had 6 ultrasounds done and they all had a hard time finding my ovaries, but they said that they ended up finding them  I was told that i had a 10cm behind my uterus. I than had a CT scan that show two cysts. What they were actually seeing was my ovaries wrapped around the back of my uterus along with my fallopian tubes, it wasnt a cyst at all behind there. A good doctor will know just by looking at it. They most likely will do a biopsy on ones that could possibly be cancerous. I had three biopsy's done for three different kinds of cysts and lesions.  

I am a mother of one child with no complications so everyone is different when it comes to having children.  She will only be able to tell when that time comes.  

I was on the pill for 7 months prior to the surgery and it helped at first than the pain started to kick in again. after the surgery i was put on lupron, at the time i still wasnt 100% if i wanted to be on it or not because of the horror stories i heard about it.  I did however go on it for 3 months i did the monthly injections in which i recommend over the 3 month injection because once you have it and if it doesnt jive with your body than you have to wait three months plus for it to be out.  I had side effects like weight loss, vaginal dryness, and sharp pains all over my body.  I was also on the add back meds (small doses of progestrone and estrogen) so that i didnt get the menapausal symptoms which helped alot.  The injection is given by your doctor, you pick it up at the pharmacy.  It cost me $500 per shot which thank God i had coverage for.  Since coming off the lupron i havent been the same I am in so much pain and my hormones are all over the place eventhough i have been back on the pill for months.  Would i recommend lupron?? i really dont know because i think its just masks the solution, a temporary cure to the inevitable.  It will return again and again and again.   It is best to change her diet so that she eats properly because certain foods trigger this disease and makes it worse.  She should eat all wholegrains, fruit, vegetables, no red meat, no dairy, no sugar, no greasy food.  It is hard but trust me you feel better.

An endometrioma is a blood filled cyst. An IUI is an intrauterine insemination, its when they remove the sperm i think and put it into the uterus.  

I am glad to see that you are asking these daughters, i only wish that i had a mother like you that cared.  I started having pain at 15 yrs old and was left untreated for 15 yrs.  I was diagnosed with Stage IV endo it was all over my bowels, bladder etc.  My mom still doesnt care.  Your daughter is a very lucky lady :)

If you would like to contact me or look at my profile feel free. I was in your place once as well and thanks to this site and all my ladies i met on here over the years I got most of the answers i needed and I felt very educated when talking to the doctor before and after my surgery.  

Angela






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389909_tn?1226000452
First of all thank you all for your help, I've sent you all invites for friends-I won't be offended if you don't accept.  I guess I am overwhelmed with the information that I'm receiving.  Everyone is so educated on endo.  I guess I'm in the right place :-).  Secondly, thank you for being so forward and straight up with me.  I don't want anyone to pussyfoot around and tell me things they think I want to hear.  I want to hear the things I need to know.
I know the fertility issue is way in the future (My daughter isn't even sexually active yet) and we don't even know for sure if she has endo.  I think it is just a feeling that I have.  She started out with an ultrasound that showed cysts and follicles on both ovaries and then a CT scan that showed fluid in the pelvic area, she was referred to a GI and had a colonoscopy done that came back normal.  Had a repeat US last week and the large cyst that had been there was gone so the only thing left were the follicles.  Is it possible for the follicles to be causing so much pain?  I requested the laparoscopy be done (doctor suggested it but wanted to wait another cycle of BC).  My daughter is taking Tylenol 3 and Ibuprofen 800mg around the clock for the pain and is still having some break through pain.
  I'm very nervous about the Lupron.  My daughter is a teenager and moody enough!!!  Are there any long term effects with the Lupron?  We go to the doctor next Thursday for the pre-op and I have a list of questions that is getting longer by the minute.
Ticked, I have some quetions re: the diet-  I would like to say that my daughter eats pretty healthy, she is very active in sports and trains year long for running.  She doesn't eat a lot of junk food (sugar), no soda (caffeine) we only eat wheat bread (is that close to the whole grain?)  She has asthma so she doesn't eat dairy on race days but she is a big milk drinker.  Do you go with soy milk?  She is big into fruits and veggies but she also loves burgers, especially bacon burgers.  She eats a lot of protein bars when she is running and drinks a lot of water and gatorade.  She is a very good runner.  She is a jr in high school and has gone to state for running every year but her sophmore year when  she tore the growth plate off her knee while running (but still finished the race).  I know that she is extremely worried that what ever is going on with her is going to affect her running.  She hasn't been able to run or train (exercise/weight lifting etc) for about a month now and had to back out of indoor track and the outdoor track training has just started and she is going to miss a lot of the practices.  She has a lot of colleges looking to recruit her for her running and we are really looking for her to get a running scholarship and I think that is really bumming her out more than anything right now.  My husband and I have talked to her about it and have reassured her that everything is in God's hands and whatever he has planned for her will be the outcome, but I know she is worried.  How long after the lap before she can start normal activities?
I never mean to write this much in my posts but I feel like I could go on forever.  Thanks again for all of your help.
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301354_tn?1211814120
I resumed normal activites within a few days after my laparoscopy. She'll be itchy and have some pain afterwards, but it's okay to resume normal activites soon after. I was told to rest for the first day or two and am still on restrictions not to lift anything over 10lbs (can't control that with my daughter though).

Your doctor should explain everything to you and your daughter before and after surgery.

Good luck.
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136956_tn?1363091289
Its not the follicles per say that are hurting it is that the cyst has ruptured and that is what is causing the pain.  

Milk is a no no.  I love milk as well but she will have to give that up if she in fact has endo or go with the organic milk, regular milk has hormones in it.  

Soy products have are still being debated. I dont know what to believe because whenever i read about this topic and endo they all contradict themselves.  I am still researching that one.

Whole wheat bread and most breads if you look at the ingredients have sugar in it.  Its best to stick with multigrain breads because even whole wheat has enriched flour which all the good things in the bread have been taken out.  Wheat is not good when you have endo. That is why many doctors will send someone for testing for celiacs before thinking endo because of the wheat intolerance.

As for the burgers just buy organic mean, pretty much anything organic because its all natural and there are no added hormones.  Make sure to still read lables because some organic things have organic sugar.

As for the running, she is young it wont take long to recuperate (sp?) I also am athletic and it took me about two weeks to be up and at it again and I am a warehouse manager. I lift things so that is the only thing i really couldnt do but i did anyway.  She should be fine after 2-3 weeks if that. I had alot of work done inside so it might have been totally different if i didnt.  

The lupron is a tough choice and doctors often push it because yes for the most part you feel better while you are on it minus the side effects that are pretty bearable(everyone is different)  But like i said I have been off that injection now for 4 months and i feel like utter ****.  I know that i need to go back in for surgery because if came back so quick, but i am putting it off.  I wish i could have that feeling back after my surgery and being on the lupron for that short time because i felt pretty good.  I forgot how painful and intolerable this disease was for 3 months.  The fact is it will only supress it for the time you are on it.  Truth also be told that your body may never be the same after taking it either because it has done weird things to me. I just dont feel like my hormones are the way they should be.

Talk to you soon :)


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298137_tn?1223311052
I think that most of the answers that I had been looking for came from lots of research and a good reproductive endocrinologist.  If, in fact, you do find that your daughter has endo, find her a RE, since they specialize in it they can offer you the most up to date information on treatment and help you to find what works best for her in controlling the growth of the endo.  The only way to know for sure if endo is causing her problems is through surgery, and the best thing is that once you have a surgical diagnosis your insurance will be much more likely to agree to pay for any meds or treatment that you choose as your course of action.  There's no way my insurance would have approved Lupron injections without a surgical diagnosis, like Angela, I was lucky enough to only have my prescription co-pay each month...without that, where I live the cost of Lupron is almost $600 per injection!  I can't think of any reason for her to be taking bc and Lupron at the same time, I've never heard of anyone doing that.  The standard course of treatment would be to start the Lupron right after surgery, provided that they do find endo, and then go straight to the bc after the last Lupron injection, to continue keeping the endo growth at bay.  There are ways to deal with the side effects of the Lupron, you can go the pharmaceutical route and check in to drugs like Effexor or Ativan, but perhaps meditation and massage would be a better choice for your daughter, given her age.  It's a very personal decision that no one can make for you, including her doctor, so don't let them bully you in to putting her on meds you're not comfortable with.  Do your research, ask lots of questions and try to make an informed decision.  Trying to answer your questions one at a time so I'm sorry if this seems to jump around a lot or I get redundant...I was able to go for quite some time without pain since I started on the Lupron immediately after the first lap and then went straight on bc pills, which I took continuously---skipping the inactive pills, to prevent having periods.  As long as I was on the Lupron or bc I pretty much maintained a pain free existance, but when I made the decision to quit, since we decided to try to have another baby, the pain returned pretty quickly and seemed like it was worse that ever.  The endometrioma that they removed from my left ovary was exactly what Angela described, menstrual fluid that had collected inside my ovary, they didn't send anything to path on it since there was nothing solid to biopsy.  My RE was able to make a window in that ovary and remove the endometrioma while preserving my ovary, which I was thankful for.

Yes, I did conceive my daughter naturally, as a matter of fact I was taking bc pills when I got pregnant with her...go figure.  I was 19 when I got pregnant and 20 when she was born, I had suffered with pain since I started having periods at 13.  I'll be 35 in August so that is a lot of years of suffering!  My family doc put me on bc at 16 to help with the pain and to regulate my periods, back then it's all they knew to do and you never heard of anyone with endometriosis, they just called it bad cramps and gave you bc pills then told you to deal with it or take Midol, ha!  Midol has never done anything to help my pain.    

I think I've answered all of your questions, if I left anything out just let me know...when you've been poked, prodded and cut on as many times as I have your life is an open book, why not tell your story, especially if it can help someone else bypass all of the bad advice out there on this monster, endo.
Best of luck!  Shelley
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Avatar_n_tn
Hi there,

Your daughter sounds exactly how I was at age 14-15. I was suspected of endo because my mother has it and they immediately put me on bc. I was also a runner, was on the provincial team in canada from 14-17 and attended a few national competitions during that time. I also had a high tolerance for pain, but during menstruation I was a wreck. The best thing I can say is that the bc really helped me, I had a physician who tried several kinds on me before finding one that worked well with my body. I still switch bc every year or so, as I change (I am 22 now). Initially the bc took just over 3 months to kick in, so I wouldn't be surprised if it isn't working yet with your daughter. Perhaps in another month she could try a new one too.

As for her training, its hard but she really should resume as soon as she can. In the first few troublesome months I took a leave from my indoor club and ran with them once a week. I trained 3 other days a week alone because I didn't feel like explaining to anyone (especially the boys!) why I wasn't feeling well. I found the days I exercised really helped, I felt fresher and my appetite was good. For your daughter to begin to feel better, she really needs to get her appetite and weight up. Eating may initially cause worse pain, but anorexia (symptom, not the eating disorder) causes far worse long term pain and longer recovery. I found drinking 'Boost' and food supplements like that helped when I had little appetite. Just a note though; if she stops with dairy, then she needs a calcium supplement. My mother was also a nurse so I was lucky to have someone look after me well. I managed to resume training and went on to have the best outdoor season I ever had; the coach thought the break actually helped, both to allow some growth spurt, prevent depression and I also managed to peak at the right time for outdoor nationals. I think everything ultimately works out for a reason.

I don't know about the Lupron, simply speaking from experience as I never went on it. The side effects seemed way too extreme. In my case, I had a cyst/scar tissue removed and after the three months on bc I was feeling fine. I really, really would wait up to 6 months before making the decision for Lupron. It slams the breaks on puberty which is bad news if she isn't finished growing, and many girls aren't fully finished until 18. When I quit running at 17 (declined a running scholarship in favor of going to art school- haha) I grew 3 inches and widened out a bit in the hips etc. I can't say for sure but going on Lupron at this age could cause some problems in her in the long run, at least, that was my mother's fear. Plus, the mood swings might cause her to get even more frustrated and quit running altogether.

It sounds easier said than done, but the best thing to do is have patience and wait a little while. I also should mention Tylenol 3 never worked for me, still never does, and didn't effect my mother either. When I need to control pain I take homeopathic tablets (there's lots of kinds, just need to pop into a health store and see the variety), do some yoga and get the occasional massage ;)

Good luck to you both, I hope the laparoscopy reveals something about her condition and and you and her can stop wondering, and begin resuming normal life soon.


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389909_tn?1226000452
Thank you for your post.  Everything you mentioned about the Lupron is exactly the reasons that I am so hesitant about it.  After getting all the wonderful information from all the ladies on here and talking to my daughter about it we have decided to hold off on the Lupron, to use it only as a last resort.
My daughter is on her second type of BC right now and her doctor actually suggested holding off on the lap and giving the pills another cycle.
  My daughter wants to be running and training right now but her doctor suggested she hold off just until we find out what is going on.  She wants to jump right back into it after her laparoscopy and I think if she starts off slow and doesn't push herself that may be the best thing for her. Thanks again for your post, thank you to everyone.  I'll let you know what we find out.
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Avatar_f_tn
Hello, When I was 16 years old I had to have my 1st laparoscopy b/c I was having extremely difficult periods and experiencing severe abdominal pain all the time.  At the time of my first surgery they did not find endo. but diagnosed me with it due to the symptoms I was having.  I had another lap about 2 years later and at that point the endo had taken over all of my reproductive organs and I had a tumor on my cervix.  I went through with my doctors advice which was the Lupron.  I did that for 6 months.  It was 6 months of HELL.  I did Not respond the medication well, it did not help the endo and I had to then have yet another lap. and had to go on Lupron for 1 yr.  I was told my chances of having children were slim to none.  I was devistated.  Fortunately God had other plans for me and I was able to have a beautiful daughter who is almost 2 now.  I had to have an emergency c-section due to complications of the pregnancy and at that time my OB did not see any endo.  I was able to get pregnant again but unfortunately miscarried 2 months later.  Since the miscarriage I have had nothing but complication after complication with my repro. system.  I went to my gyno yesterday and once again I have to have another lap.  He also recommended a specialist in Oregon which is a long ways away from MO where I live.  BUT if that can get me some relief I will do anything at this point.  I pray for your daughter that it is NOT endo b/c there is no cause, no cure.  For some people the treatment is great and helps, others like myself I have received no relief.  It takes a lot of strength and support of others to help get through this.  Sometimes no matter what the outcome might be, being that it is out of our control, you just need to know that you have support and faith.  Your daughter can and WILL get through this, and so will you.
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Avatar_m_tn
YOUNG GIRLS WITH HEAVY PAINFUL PERIODS PLEASE READ THIS.
When my 13 year old daughter had her first period, the period was normal.  However, over the next year her periods became more and more painful, more frequent with huge clots.  We took her to the gynecologist whom told us that he was 99.9% sure it was not endometriosis.  He scheduled her to see a gastro doctor.  She then had an endoscopy and a colonoscopy which came back negative.  The pain was getting progressively worse and to the point of missing many days of school.  We took her back to the gynecologist whom then performed a laparoscopy,  They did find endometriosis and lasered the areas.  They did a biopsy at this time which did come back negative, but the doctor said that doing a biopsy for endometriosis can be tricky and that he was sure she had endometriosis due seeing it during the laparoscopic procedure.  He then treated her with 2 rounds of Lupron shots (shots that put your body in menapausal state).  After this they gave her a birth control shot.  However, the pain continued and became worse.  At this point the pain led her to being in the bed 24-7.  When we went back to the gynecologist, he more or less had the attitude that it was in her head or some other issue.  At that point we had become so frustrated with the doctors and it was literally killing the spirit and and hope of my daughter.  By the way, my daughter had a grade point average of 4.8 and was a great soccer player.  By all means in no shape or form was she a slacker.  After being left with no hope; thinking that my daughter's only next step for relief from this terrible disease was a hysterectomy.  AT 14 NO WAY!!!.  We then contacted another gynecologist whom then referrred us to Dr. Morgan; a pelvic specialist.  After meeting with her our hopes had returned.  We learned so much more about the disease.  Information that we didn't find on the internet or from our other doctors.  In the last couple of years they have found that they are basically 2 types of endometriosis; deep seeded which occurs at birth and surface which can occur later in life after the start of one's period.  Basically. our daughter had deep seeded endometriosis (the development of cell A doesn't fully develope to cell B).  My daughter's endometriosis had began at birth and the onset of period brought the disease to light.  So in other words, the laser procedure that was done prior had only touched the surface of the endometriosis.  We were told by Dr. Morgan that our daughter would have to have the laparoscopy procedure done again.  However, they will use a light which detects all of the endometriosis,  They use this light to scope all areas, under linings and all areas.  We were told that if it is the deep seeded endometriosis that they would not laser; they  would actually cut out the endometriosis,  Our daughter did have the deep seeded endometriosis and they were able to remove it.  They told us that they had to cut pretty deep in somes areas, but felt sure they had removed it all.  We were also told that she had the endometriosis at one of the most painful areas; rectum.  This explained her severe pain and rectal bleeding.  During the surgery, they inserted a Skyla IUD which is smaller and used for teens her age.   My daughter is now cured of the deep seeded endometriosis and is doing great.  Her recovery from the surgery and the hormonal adjustment from the IUD took approximately 6 months, but is now living her life and back to playing soccer and doing great in school.  THANK YOU DR. MORGAN.  Also, I would like to mention; Lupron shots for a growing child can cause complications of the growth plates and per Dr. Morgan is treatment should not have been an option.  So you girls out there who are having heavy painful periods, please don't except from your gynecologist that this is normal.  It may be normal, but then again a second opionion is always worth exploring so please find a pelvic specialist in your area.  From what I understand they are far and few, but it is worth it.  If you would like to contact me for more information, email tbhorn52@gmail,com,
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