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Message To 13 Year Old “Flocked”

This post will be a response to a blog comment I received on a recent post. I felt this comment warranted a post of its own.

First, I would like to include the comment left on a previous blog post that motivated me to write this post in response…

Comment by “Flocked”:

Hi,

I was looking for a while to see if there were any people who like me have pain day and night and in between! Just ALL the time, not just during my period even when I don’t have it! And I’ve had my period for about 7 months now (right after my dad left us) and I’m not sure if it’s normal that I have 17 days of period and then pain in between! I’m on birth control but I vomit 13-17 times a day! So I’m not sure if its really helping, I know I can’t take pain killers or I’ll get allergic like my mom. It’s only a short term solution but even that doesn’t help much. Doctors don’t believe that a 13 year old could have it. Do you have any advice for me?

Thanks I’d greatly appreciate it!

Please note that I cannot and do not give medical advice. What I can do is share information, support, and in some cases tips/suggestions/resources.

Before I respond to the comment above, I would like to direct readers to my disclaimer page.

I wish to emphasize, as I have in many preceding posts that the definitive means for diagnosing endometriosis is a laparoscopy. (I am not even sure that this commentator was asking about endometriosis but that possibility jumped out at me based on the above comment). According to the Endometriosis Association:

Diagnosis is considered uncertain until proven by laparoscopy, a minor surgical procedure done under anesthesia. A laparoscopy usually shows the location, size, and extent of the growths. This helps the doctor and patient make better treatment choices.

That said (and not knowing whether the above patient has been diagnosed by laparoscopy), it is important for people to understand how very common it is for young patients to be dismissed. It’s important for people to understand that the average diagnosis of endometriosis occurs 9.9 years after the onset of symptoms. It can also be extremely difficult to find physicians who wish to perform surgery on such young patients… despite the fact that a laparoscopy is the definitive method for diagnosing endometriosis. Where does all this leave a young patient who is suffering and doesn’t know where to turn for the medical care she needs? These are some of the classic challenges that endometriosis presents.

Again, to be clear, I am not diagnosing the girl who commented on my blog. Only a laparoscopy could confirm or rule out endometriosis as the cause of her symptoms.

My endometriosis symptoms began at age 13 and I was undiagnosed for the first 10 years. Now 41, I have lived with endometriosis for nearly 28 years. I have written before about some of the adventures I experienced when I was younger… such as my account of a particularly memorable (for all the wrong reasons) field trip I took in seventh grade. I also previously shared a reprint of an interview that Amy Jussel published on her organization’s blog Shaping Youth (an interview that I published on my former blog, Jeanne’s Endo Blog).

Now, moving on to specifically addressing the comments and questions of the brave 13 year old who posted a comment on my blog today.

I am going to work in a backwards fashion. By that I mean, I’m going to answer your last question first; I need to emphasize that I am not in a position to give medical advice. Frankly, no one should provide medical advice via the Internet. (Though some will certainly try). However, I do have some suggestions and ideas that might help you and I can certainly provide you with loads of empathy as you begin your journey to find out what is causing your symptoms and how to obtain relief.

In answer to your question about whether there are “people who like you who have pain day and night and in between”, sadly the answer is that there are far too many. The good news and flip-side of this is that you are not alone. I have personally experienced immense support from my fellow chronic illness patients and have found fellow patients very informative as well. Networking with people who understand how you feel is mutually beneficial.

Now, the reason I jumped right in (above) with references back to my own days as a 13 year old was the fact that you specifically mentioned your period in your blog comment. This is not to say that you might not have something entirely different going on than endometriosis. Based on the information you provided, it sounds like a possibility. Again, the only definitive diagnosis for endometriosis is a laparoscopy. So, finding a physician qualified to perform a laparoscopy and skillfully remove any endometriosis he/she might find would be crucial.

As far long periods are concerned, I feel just terrible for you because I’ve been there too. I once had a period every day for over a year (August 1994 – August 1995), including when doctors put me on hormones intended to induce a medical menopause. I just kept on bleeding. Is your doctor aware of how long your periods are? Have you had a laparoscopy to diagnose endometriosis? Or is your doctor prescribing birth control pills without having performed a laparoscopy first?


I hate to be the bearer of bad news and I only have the few details you provided on which to say this but it might be time to search for another doctor for either a second opinion or an outright switchover. Again, I am not dispensing medical advice but if I had a patient who I suspected has endometriosis I would:

1) refer her to an experienced, highly-skilled laparoscopic surgeon

2) not just prescribe her birth control pills “to see what happens” without having performed a laparoscopy to verify what is going on (many conditions’ symptoms mimic those of endometriosis)

Having bleeding for such a long time made me anemic. This, in turn, made me feel sick in other ways.

As far as feeling sick all the time (not just during periods), there are many endometriosis patients who can relate to this.

When I was a teenager, an average period for me was 11 days (some longer and some shorter). This is clearly not normal but it was “normal” for me. I also used to vomit… though not as often as you described. That is a great deal of vomiting. I know that when my pain level got high enough, it triggered vomiting. The amount of vomiting you are experiencing is a great deal. I don’t know what else might be causing that. Is your doctor aware of that? Were you vomiting like that prior to taking the birth control pills? I took 9 or 10 different types of birth control pills years ago and some of them actually worsened my symptoms. As it turns out, the class of birth control pills my first doctor had prescribed specifically for my endometriosis tends to make the symptoms of endometriosis worse! A more knowledgeable doctor later helped me understand that those pills were, in fact, worsening my symptoms.


If you cannot tolerate painkillers and if, by chance, you have not obtained an official diagnosis yet, I would view it as even more important in your specific case to obtain a proper diagnosis. Not being able to take painkillers eliminates quite a few options, obviously. Getting a proper diagnosis (if you haven’t already) is important. There are many ways of managing symptoms others than “traditional” ones such as painkillers and birth control pills. I have written about and even done video on acupuncture because it has helped me immensely.

When you say, “doctors don’t believe that a 13 year old could have it”, I am assuming you are referring to endometriosis. Is that correct? I don’t mean to jump to conclusions. I am basing my assumption on what you said in your comment.

I hope that you will return to my blog. Regardless of what is causing your symptoms, I believe that the readers and commentators of this blog may very well be of some help to you moving forward.

It is admirable, resourceful, and brave of you to seek out information on your own at such a young age. You are already taking useful steps that will enable you to access resources to assist you in coping with your medical condition(s). Hang in there!

This post was written by Jeanne at http://chronichealing.com. Copyright © Jeanne — chronichealing.com. All rights reserved.


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Reading: Message To 13 Year Old “Flocked”

59 comments

1 JeanneNo Gravatar { 07.17.11 at 2:45 pm }

Welcome Pamela!

I am glad you have found the comments helpful. I’m sorry your daughter is going through so much. It is shameful that doctors treat girls as if they are making things up… as happened to your daughter. I’m sorry. There are good doctors out there who care and take patients seriously. They can be hard to find but they are out there. With her periods being so long, have they checked her iron levels? I know that I’ve had many times over the years where I became anemic.

I’m sorry your daughter is in so much pain. Hopefully the gynecologist she is seeing this week is experienced at diagnosing and removing endometriosis. Having a skilled surgeon is very important.

Please don’t beat yourself up at all. You are actively seeking out information about endometriosis and you are interacting with endometriosis patients. If anything, you should pat yourself on the back for your efforts to get your daughter properly diagnosed (with whatever she may have… endometriosis or otherwise) and treated. I hope you’ll keep us posted on how she’s doing. I know you’ll find the people on this thread very helpful and supportive.

Peace,

Jeanne

2 JeanneNo Gravatar { 07.17.11 at 3:14 pm }

Pamela,

I just emailed you with some additional information you might find helpful.

Jeanne

3 EmilyNo Gravatar { 05.06.12 at 5:17 pm }

Hi Jeanne ! my name is Emily, and I know this is basically the same question although I have much different symptoms and I was that you could either answer my question or write a blog about it ! ok, so for the past week or so I had been having lower abdominal pain, and yesterday and today it has gotten much worse. I went to the ER this morning and got an ultrasound and blood work which were both normal. After that the doctor just sent me home with pain meds and said that I was having mid-cycle pains. Later this week I am going to a GYN doctor and hopefully she can find out the problem ?I am 13(girl) It is tender, hurts without even pressing on it, and the pain meds aren’t helping too much. so i was wondering if this is endometriosis ? PLEASE HELP ! thanks !

4 JeanneNo Gravatar { 05.08.12 at 2:23 am }

Welcome Emily!

Before I get started, please take a peek at my disclaimer.

Abdominal pain can be caused by many different things. I’m really sorry that your pain is so significant. Whatever it is that’s causing it, I hope you get some relief as soon as possible.

As far as the ultrasound and blood work being normal, this (normal findings on these) is actually not uncommon for people who have endometriosis. Obviously I’m not saying you do or don’t have endo. What I’m saying is that having those tests come back negative only helps them rule out what they were looking for when they performed them.

I’m sorry the pain meds aren’t helping you. In my personal opinion, when doctors make comments such as “you’re having mid-cycle pains” at a time when you’re landing in the ER… I myself would try to evaluate whether that doctor said this in an attempt to be dismissive or what? Pain that’s severe enough to result in a trip to the ER warrants serious attention, evaluation, and examination! After all, you already knew you had pain (and if you were mid-cycle you knew that too). So, being sent off with a “mid-cycle pain” diagnosis isn’t very informative, in my opinion. You certainly could have been experiencing mid-cycle pain, of course. But why?

The question – if it were me – would be WHY is there pain? I’m not sure if this doctor was a primary care physician or pediatrician or what. No matter what happens with other doctors, if you are going to continue seeking treatment (for anything) from that doctor, you may find yourself in a position of educating him/her about how serious your situation is, how bad the pain is, how much it affects your quality of life, and (once you get one) what your diagnosis really is/what it means.

I hope the GYN is able to help you. The only definitive way to diagnose endometriosis is with a laparoscopic surgery. Doctors sometimes make educated guesses prior to surgery BUT it is imperative to rule in (or rule out) endometriosis via laparoscopy – rather than jump to any conclusions about whether one does/doesn’t have endo.

So, the GYN you’re seeing later this week won’t be able to tell you definitively – on the spot – whether you do or not not have endo. I have written posts about laparoscopy (including “what to expect”). You may find it helpful to read that. It’s impossible for me to say whether you do or don’t have endometriosis. The only way to know the answer to that for sure is to have a surgeon tell you the answer after performing a laparoscopy on you. If you should decide to have laparoscopic surgery, please bear in mind that it’s important to find a highly skilled surgeon who is very experienced with recognizing and removing endometriosis.

I wish I could better answer your questions but the reality is that endometriosis can only be diagnosed definitively by laparoscopy and there are other conditions that can mimic endo. For women and girls experiencing chronic pelvic pain (more than 6 months), a high percentage of them do eventually get diagnosed with endo.

I’m not sure if you’ve had pain before or not. I realize you’re only 13. Please do check back here. Others from this thread may see your comment and provide feedback here for you. Also, I am anxious to hear how you make out this week with your appointment. So, please drop back in. I wish you the best of luck this week and hope the pain stops or reduces as soon as possible.

Take care!

Jeanne

5 EmilyNo Gravatar { 05.11.12 at 9:08 am }

well first of all thank you so much for responding !(: and my appointment is actually next week on Thursday. And yes I was pretty mad about that diagnose also. I actually had my appendix taken out last may, my gallbladder out last June, and 2 endoscopies last June and July, although having my appendix and gallbladder taken out d not help the pain so maybe I have had endo the whole time ? I’m not sure but maybe that could’ve been the problem ? Well once again thankyou so much for responding and when I have my appointment I will be sure to tell you what they say !

6 JeanneNo Gravatar { 05.11.12 at 3:18 pm }

Emily:

I just posted your latest comment and I have posted a link to this blog post on my Facebook wall (plus on the Facebook page I have for this blog). I’m hoping that might encourage some of my Facebook friends who have endometriosis (and various other chronic illnesses) to post feedback for you here. I will post a more detailed response as soon as I am able but wanted to get your blog comment posted so my Facebook friends and blog readers can see it. In the meantime, please feel free to send me a Facebook friend request if you wish. (I have several Facebook friends who have endometriosis). Just click on the Facebook icon (pink heart) in the “Connect With Jeanne” section of this blog’s left (upper) sidebar. I’d write more here now but I’m pressed for time. I’ll write more as soon as I can. Hang in there!

Jeanne

7 MelanieNo Gravatar { 05.11.12 at 10:42 pm }

I just wanted to say that I cannot take the pain killers either. I have stage 4 endo and am going in for my 4th surgery in a week and a half. I have been doing acupuncture, heating pad and reiki! It has helped my tremendously. It is not normal to be in pain for years. But the acupuncture and reiki has helped me get through my work days. Good luck to all of us and I’m still praying for a cure!

8 JeanneNo Gravatar { 05.11.12 at 11:44 pm }

Welcome Melanie!

I’ll post a more detailed reply ASAP. I just wanted to get your blog comment posted for now. Thank you very much for sharing your feedback! Take care!

Jeanne

9 JeanneNo Gravatar { 05.15.12 at 11:40 am }

Emily:

I’m sorry for the slow response. Best of luck to you for with this Thursday’s appointment. I can understand why you’d be upset. It sounds like you’ve had a lot done. Bearing in mind that I am not a health care professional (and certainly can’t engage in conjecture about diagnoses), I will say that endometriosis can fool many doctors into believing it’s all sorts of other things – in part because there are so many ways endo symptoms can express themselves. Sadly, far too many women are misdiagnosed with a variety of other things before they receive an endometriosis diagnosis down the road. Obviously, that’s not necessarily to say what’s happening in your specific case but it is crucial, I believe, to find a doctor who is highly skilled and very knowledgeable – to reduce the chances of misdiagnosis and inappropriate treatment.

When you had your appendix out, did you get a copy of your operative report? If so, was the appendiceal tissue normal when they biopsied it? If you didn’t get the operative report, it really might be worth contacting that surgeon’s office to request it. You’ll probably need to just sign a release form for it. It is your legal right to get medical records such as this. Do you know what they were looking for with the endoscopies? For example, were they trying to rule in/out something like Celiac Disease?

You had your gallbladder out too? Wow. I would hate to think that your doctor (or doctors?) are unnecessarily removing your organs. Did they give you an operative report for that surgery? Again, I would request one if you don’t already have it. If the tissue was normal for these organs that were removed, I personally would steer clear of these doctors in the future.

Is the doctor you’re seeing Thursday the same one who has operated on you previously? I don’t wish to alarm you by asking. I am just concerned about the history you’re relating here. Good luck and please keep us posted!

Melanie:

I’m sorry for the slow response. Life has been beyond busy for me lately. I’m sorry you can’t take painkillers. I know what that’s like. Best of luck with your upcoming surgery!! (Having had 7 surgeries myself, I know how old it can get to go in for repeated surgeries). I love, love, love acupuncture! I’ve been getting it regularly for 11 years this month. It’s just amazing! I’m glad to hear you’ve found several things that help you manage your pain. No, it’s not normal to be in pain for years. Anything that lasts longer than 6 months is considered chronic by the medical community. Good luck to you and please keep us posted! Yes, a cure sure would be nice. Take care!

Jeanne

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